Going to my head ...

New Year reflections

2012-01-28T13:34:00.000-08:00

Can hardly believe that January is almost over already!! Since Christmas the time has simply flown by and we seem to have been in a whirlwind of activity! Not least a hastily arranged week's trip to Melbourne, Australia to meet up with our son while he was visiting there from the UK. It was really lovely to catch up!

Melbourne was quite something to get used to .............,and after 12 years of peaceful existence in New Zealand, we found ourselves to be true "country mice" - the population of Melbourne being about equal to the whole population of NZ!!!! But we had a good time walking the streets and riding the trams to explore the city.

While we were there we managed to meet up with two long lost distant cousins, Valerie and Anne, both born in Melbourne ............ we are all descended from British g-g-g-grandparents Richard SPARKS (1794-1876 Great Marlow) and Sarah STEVENS (b.1799 Windsor). Anne and her husband Michel very kindly picked us up from our hotel and drove us out to Vals house in Mornington (about 50kms). We had a lovely (and lively) lunch together and it is a great treat to find new relations!

Headnotes
I have been on Prozac for over a month now and have also had my first counselling session, both of which seem to be helping. I have been sleeping better and this week the headaches and nausea seem to be diminishing. Tomorrow I am having my annual MRI. Fingers crossed that this time there will be signs that the tumour is shrinking ......

In the arms of the Angel

2011-12-23T17:43:00.000-08:00

This week saw the death of another friend from cancer - this video is for all those who have lost their battle with this horrible disease during 2011. Especially Gill and Bruce.

Well fought you two darling people. We miss you.

The end is in sight (of the year I mean!) .......

2011-12-12T18:51:00.000-08:00

Things seem to be going wrong in my head. Maybe its just an accumulation of all the nights without proper sleep but it feels worse than ever. Went to the GP about it and had a bit of a melt-down, ........ her assessment of the situation is that I am clinically depressed. No surprise there, I suppose. So now I have been started on Prozac and will see her in a week to report progress. Hopefully things will start to improve soon.

So ... Just about ready for Christmas .... cards and messages sent, presents bought (though still to be wrapped) and some visits have been planned. Think we'll keep it very low key this year.

To all who read this:

A very happy Christmas and good health in 2012 to ALL .....CHEERS!!

Keeping things in sight!

2011-11-28T16:36:00.000-08:00

Well its been a while since I posted on this blog. Is that a good or a bad sign, I wonder? On the one hand I am keeping busy with housework (reluctantly), playing bowls (a lot) and painting (occasionally) and on the other I am so tired all the time, especially in the 'thinking' department! I can't seem to get an unbroken night of restful sleep while in the daytime I feel unable to think very hard or deeply about anything. Am I making sense here? .......... I don't think so. But I know what I mean (I think!).

Had my eyes tested last week and was aggrieved to find that there had been a significant change in both far and near vision since my last visit in 2009 (but no evidence of double vision, thank goodness). The optician assured me that this was age related so I hope he is correct and that the deterioration is not due to Feckit. So I am now waiting for my second lot of prescription lenses in 18 months.

I cheered myself up yesterday, however, when I managed to finish a painting that I have been struggling with for several weeks on and off. It is called 'Wharfside'.

No diplopia ....

2011-10-21T12:54:00.000-07:00

Saw my GP yesterday who checked my eyes again (checked 3 weeks ago) and also tested my neurological function .... all clear. She thinks the episode of double vision was probably due to a temporary failure of my eye muscles to work in unison. If this should happen again she suggests that I cover each eye in turn to see if the 'double' image resolves with one eye covered.

"The 2 most common mechanisms for diplopia are ocular misalignment and ophthalmic aberrations (ie, defects of the cornea, lens, iris or retina). The most important clue to the identification of the mechanism is whether the patient has monocular or binocular diplopia. Ocular misalignment in a patient with normal binocular vision results in binocular diplopia, defined as diplopia that resolves when either eye is occluded. If the image of an object that is being viewed does not fall on the fovea of both retinas, then the image appears to be in 2 different spatial locations and diplopia occurs.

Monocular diplopia is defined as double vision that is present in the affected eye while the other eye is occluded. In nearly all circumstances, monocular diplopia is the result of a local ocular aberration of the cornea, iris, lens or, rarely, the retina. Monocular diploplia is never caused by misalignment of the eyes."

So the explanation for my brief episode of double vision was nothing to do with Feckit after all ...... GREAT news!

Double trouble! ..... was it diplopia?

2011-10-17T17:42:00.000-07:00

A very weird thing happened yesterday! I was reading in the lounge and looked up out of the window on my right to watch one of our cats, Oliver, stalking a very large Paradise duck. The duck soon flew off unharmed but to my amazement I found that I was looking at two distinct Olivers walking one behind the other!

Naturally enough I found this rather alarming so I looked away to check if I was 'seeing double' of every thing around me .... but I wasn't. I looked outside again and found that I was now looking at two Pru's (our other cat) who had followed Oliver across the lawn. This made me realise that this "double trouble" was definitely not a figment of my imagination! It only appeared to happen when I looked to the right without completely turning my head. However, all seemed to return to normal within a very short time (around 2 to 3 minutes) and I have not had any repetition as yet.

Diplopia (double vision) is a distinct condition and should not be confused with "blurred" vision. It has many potential causes which may involve various different structures. Because one of the many causes could be interference in the pathway of one of the cranial nerves III, IV or VI it might be significant in view of Feckit's position in my brain. Even though it has only happened on this one occasiion I thought it prudent to inform my doctor just in case it should occur again.

Cancer Networks and their Offer of Hope

2011-09-19T17:50:00.000-07:00

by Guest Blogger David Haas

From a psychological perspective, cancer is a very scary experience for patients and can greatly inhibit a person's ability to remain positive. Doctors will always tell their patients to remain optimistic, but without a strong support system, it is very hard for cancer patients to do that.

The cancer support community is just one example of how cancer networks offer hope to patients and people who have loved ones with cancer. Additionally, in-house cancer group sessions occur every week and contain new cancer patients, patients in remission, and friends and family of cancer patients.

Doctors of all different kinds of cancers from the very common like breast cancer to the very rare and deadly such as mesothelioma will always recommend their patients to cancer support groups. There are a couple of reasons for this. First, patients can receive extra knowledge from attending support groups. It is reassuring to know that there are other people who are going through the same thing you are going through. It is also reassuring to know that there are people who have overcome the same illness you have.

Cancer support networks are therapeutic to all types of cancer patients. Patients in remission may find it the most beneficial because it allows them to talk about their past experiences and help other patients who are going through it for the first time. Having the chance to help other people is a rewarding experience, and new patients greatly appreciate the help and encouragement they receive from patients in remission.

Relaxing is something that many cancer patients forgot how to do. Unfortunately, though, relaxing is a vital aspect of recovering. But by being surrounded by other people in the same situation, cancer patients may find an avenue to expel his or her fears and anxiety, allowing the patient to relax and let their mind be at ease.

Friends and family can also greatly benefit from attending cancer support groups. The information they learn can equip them to help their love ones cope with their condition. It will also give them a greater appreciation for cancer patients and a deeper perspective of what cancer patients endure.

If you or someone you know has been diagnosed with cancer, find a support group that can help. Thankfully, there are thousands of support groups nationwide, and there are even online support groups that can help.

David Haas
Mesothelioma Cancer Alliance Guest Blog

NO comment!!!!!!!!!

2011-09-15T14:06:00.000-07:00

Hells bells ... cannot get the Comments facility to work .... its driving me nuts! Have tried everything I can think of and now posting this in the hope that something will happen!!!!!!!

Update ........ On (Not So) Golden Pons!

2011-08-24T17:51:00.000-07:00

Having previously combined this blog with my art blog I have decided to "uncombine' them!! The reasons for this are that people who read about my art may not be particularly interested in reading my "meningioma diary", while those who are may not be able to follow the relevant posts very easily when tucked between my art postings. Also I now suspect that Feckit is not quite vanquished and may even now be twitching!

My last posting re health was in April when I fell and broke my arm. Its a bit annoying to have to report that after 6 weeks in plaster, followed by several weeks of physio, the wrist is still giving problems. A recent visit to the orthopaedic surgeon revealed that cartilage between the small bones has been permanently damaged resulting in pain and stiffness on movement.

The surgeon has suggested bone removal and replacement with a metal rod to immobilise the wrist - the object being to relieve pain. However, this idea does not appeal to me very greatly (are you surprised?!), particularly as it would mean permanent loss of flexibility. So we agreed that progress (or not, as the case may be) should be reviewed in another six months.

Headnotes:

It is now 2 years since radiosurgery was completed .... so what is Feckit up to?

Causing headache and nausea at night?

Spells of nausea and vertigo during day?

Pain and tenderness on left side of head and in left ear?

Memory problems?

Tendency to choke on liquids/saliva?

Seems so, yes!

But neither the neurologist nor the radio-oncologist have been able to explain these symptoms which, by the way, are the very same ones that sent me to my doctor in the first place in 2008!

Weird, eh?

The most recent MRI report (February 2011) mentioned that "The mass abuts the left side of the pons, which is minimally indented", whereas at least two previous MRI reports have stated that "It abuts but does not distort the pons".

However, the reports describe the tumour as 'stable' so I am probably way off track in wondering if a 'minimally indented pons' might possibly be significant!

Gill - a fond farewell

2011-08-15T14:03:00.000-07:00

Dear Gill,

Lovely friend and artist, you have lost your courageous fight with breast cancer and will be sadly missed by all who knew you. Thank you for your friendship and support, and for the great times we had together with friends Jill and Diane.

Diane, Jill and Gill

Gill, Jill, Lesly, Diane

Gillian Hammond who died 15th August 2011. Remembered always.

bowled over???

2011-04-09T18:42:00.001-07:00

Life has proved a bit of a bumpy ride just recently! First came my follow-up appointment with the neurology consultant after my annual check MRI.

Oh, how I fail to see any point in seeing this man .....

Consultation time is usually around 5 minutes if I'm lucky, - for which I have to travel 40 minutes by car, find parking, etc. For a start he and I do not seem to talk the same language - he asks questions, I answer, and he brushes whatever I say/ask aside.

He sometimes does a full neurological examination, but usually just tests my eyes and my hand grip. I cannot TALK to him ... he is so remote and appears disinterested. "Just another neurotic ex-nurse" - I can (almost) read the words ticker-taping across his forehead! Yes, a pointless exercise.

Happily, bowling this year has proved far more rewarding! This is my last season as a Junior player (less than 5 years) and on Thursday night I received the following awards (trophies and/or certificates) from our Bowling Club - Junior Ladies Singles Champion, Ladies Singles Champion, Ladies Pairs Champion. What was even nicer was to receive the annual award for Most Improved Player!

The Presentation evening was a very jolly affair and finished with a Pot-Luck Supper, - my contribution being a large platter of spicy chicken drumsticks.

While I'll admit to having three glasses of wine during the course of the evening I can assure you that this did not cause the fall which happened after I got out of the car on our return home!

This resulted in me spending the night on a trolley in the A & E Department, having sustained a fractured arm, a cracked cheekbone, several grazes and bruises to my face, hands, legs and chest. I do believe in doing things thoroughly!

So now, a couple of days later, I find that I am feeling a lot better even if I do still look like Bride of Frankenstein! And today I've received loving messages from my kids, both here and overseas. And hugs, cake and lovely yellow gazania flowers from my two Kiwi grand-daughters!

Now THAT has bowled me over and no mistake! XXXXX

Good and bad news ..... making sense of it all

2011-02-24T19:14:00.001-08:00

Saw the radio/oncology consultant yesterday following my annual MRI (its now 19 months since I finished six weeks of radiology treatment). The GOOD NEWS being that the tumour has not grown. In fact there has been no change at all - its no bigger, no smaller. Although there is no sign of cell death within the tumour I am so very relieved that there is no signs of growth. The results do explain why I am still having some symptoms, so its a case of carrying on as I have been and living life as normally as possible.

But any possible difficulties pale into complete insignificance compared to the BAD NEWS of the week, - the Christchurch earthquake. Even though we live 4 hours drive south of that city we still felt the quake and our house swayed back and forth. We knew at once that there had been a big one somewhere. What we could never have imagined was that it was a second earthquake near Christchurch or that it would take such a dreadful toll in human lives, serious injuries and severe damage to properties, amenities and services. The full implications of the tragedy have yet to be revealed but it will certainly be many months before some sort of normality can be restored for those living in and around the city.

TODAY (Day 4)
- concern as wet, cold weather forecast
- tough and quick decisions to be made about damaged buildings.
- 113 confirmed dead; 228 missing; 70 live rescues; five bodies recovered overnight.
- more than 90% of the CBD has been checked and assessed
- Defence Force personnel are supporting the 3 services with patrols, engineers and medics.
- Housing NZ's help line has received over 1800 calls offering short term accommodation

To HELP THE PEOPLE OF CHRISTCHURCH please follow link for a list of agencies where donations of money or services can be made. Thank you.

When you need a friend ..............

2011-01-25T10:38:00.000-08:00

Golly but I'm really bogged down about art at the moment. Absolutely drained of inspiration, ideas, or the mental fortitude to try, or so it seems. But at least I have my art friends both locally and on-line ..... and that really helps to keep me in touch and hope alive!!

Here is a link to a great post by artist Martha Marshall entitled 'When solitude isn't enough' in which she talks about the necessity for contact and input from others for the nurture our artistic selves. In this really interesting and inspiring article she also links to writings of other contemporary artists on how they deal with the trials and tribulations of making art!

Martha talks about keeping regular contact with other artists and we have a thriving little art community where I live who meet regularly for workshops, to 'show and tell' or just to touch base for a chat and a coffee. Here are just a few of the group from a couple of years ago, having just tried out working with pastels with me for the first time.

And of course I must mention again my three art buddies and best friends, who not only inspire me to keep trying with my art (and patiently listen to my moans!) but have been so wonderfully supportive during the course of my tumour diagnosis, treatment and recovery.

Di, Jill and Gill

Thank you girls, for all the love and laughter! XX

About a sale, and about great expectations ... a bit of a rant!

2010-12-06T09:14:00.000-08:00

About a sale - it's nice to be able to announce that 'Grandma's Recipe' sold at the 2010 City of Dunedin Art Exhibition. It was purchased by a couple from Gisborne - and I hope that they get many years of enjoyment looking at it.

Great expectations - a bit of a rant. A friend remarked yesterday that I have not been posting any 'meningioma diary' posts lately. I replied that I just could not be bothered .......... but that isn't entirely true. The real truth is that I have lost heart in writing about it, and have even begun to feel almost guilty for mentioning it!

You develop a potentially life-threatening 'condition'. You digest the news. You weigh the options. You gratefully accept the available treatment on offer. The hopes and expectations of those around you are that the treatment will be successful and that you will recover in a reasonable amount of time. In fact that you will be soon be pretty much the same as you were before.

As someone said on TV the other day in a programme about cancer - "People want you get well quickly or hurry up and die and get it over with".

Ah, yes, the expectations of others.

I mean, let's face it, it's depressing for everyone if their kind enquiries as to your current state are met with something like the truth

"Well, actually, although I am pretty good there are some days when I feel like shit. And I don't know why this is. And the neurologist doesn't know why this is.

My head often hurts and I get shooting pains in my left ear. I get dizzy. I am still getting nausea, especially at night when I am lying down. My memory is definitely getting worse ......... I often cannot remember the names of people, things and events. Finding the 'right word' when I am speaking seems to be getting increasingly difficult.

I could not accurately tell you what I did or where I was on any day last week.

Is this the effect of the meningioma? Is it an after-effect from radiation? Is it dementia? Is it my imagination? Whatever it is it's distressing.

Although something like 90% of meningiomas are benign I don't know for sure that mine is not malignant. Without a biopsy no-one can be absolutely certain, and Feckit's location was not suitable for biopsy or surgery.

And although radio-surgery treatment is relatively safe and has a high success rate there are no guarantees. Feckit may start growing again ......... hopefully it won't.

But, thus far, the signs are good in that Feckit has remained the same size. Although I would really like it to get smaller! But the specialist tells me this may not happen ........ or it may happen but very slowly. Like over the next 5 - 10 years."

So YES, I know I am very lucky and my brain tumour is most likely a benign one. And YES, I have had the best available treatment and so far so good. And YES, I count my blessings (as someone suggested only last week!). And YES, I am trying my best to live a 'normal' life.

Yes, I am trying to meet those Great Expectations but I shall never be quite the same.

Marbles

2010-08-18T21:19:00.000-07:00

Art-wise I am not doing much other than thinking! .... I hope that I will become energised pretty soon but at the moment ideas are few and far between. Not so sure which road to follow ......

Head-wise I saw the radio-oncologist for my follow-up appointment today. Hard to believe that its now 13 months since I completed the FSRT. We discussed my March MRI result (which showed no growth) and agreed it was very encouraging. What wasn't quite so encouraging is that fact that the tumour will never disappear but it may get smaller, over the next 10 years or so, at a rate of around one millimetre per year. If so it may be half the size by 2020 ......... looking forward to THAT!

She can offer no explanation for the nausea, insomnia or my difficulty finding the correct word or name when I want it. So maybe its not the fault of the tumour at all, merely that I am losing them ..................

You know, those round things made of coloured glass!

Catch up .....

2010-06-27T21:45:00.000-07:00

Well its hard to believe that a year ago I was undergoing six weeks of radiotherapy! .... a lot has happened since then, both good and not so good. However, I am still here and functioning ... maybe not on all cylinders but most of 'em!

Since my last post at the beginning of May I seem to have been well occupied with all sorts of things. So much so that it hasn't mattered too much that I have still not heard from the neurologist regarding my MRI result ... he has obviously given me up as a bad job!

Anyway blow him ..... I have been busy with art and have completed 3 new paintings. I've also been active with indoor bowling at our local club and have been selected to represent our district in a couple of team events.

But best of all I've been to USA with John for a week to meet up with our youngest daughter and her new husband! They travelled from UK to get married in Las Vegas and we were able to watch the wedding LIVE via the Internet .... it was lovely and so beautifully arranged (not a bit how I had imagined!).

Afterwards they hired a car and stayed in the Yosemite National Park on their way to San Francisco where we met up for a few days.

John and I had a couple of days on our own before they arrived and we explored Fisherman's Wharf, Pier 39, Union Square, the San Francisco Museum of Modern Art and a bay cruise. Once Mel and Dave arrived we did the Wharf and Pier again and also went on the obligatory trip to Alcatraz. This was very well worth doing and a great experience. Our best day together was a coach trip to the Napa Valley for wine-tasting ... the countryside and winery buildings were really beautiful. Plus the wine was pretty good too!

All too soon it was time for the long haul flight home (13 hours). I wish that we could have had longer together but am so thankful to have been able to make the trip.

The long haul .............

2010-05-02T22:09:00.001-07:00

Today I have had some correspondence via e-mail with the oncologist regarding my follow-up MRI result. While I am relieved that there has been no growth, and the tumour appears stable, I could not help hoping that there would be some shrinkage to give me hope that my symptoms would start easing soon.

However, the professional opinion is pretty crushing - viz. tumour shrinkage is likely to be only slight and "may take years", and "symptoms may ease over about 5 years".

FIVE YEARS? .......... that's a hard thing to take on board ........

8 months since radiosurgery - MRI result

2010-04-13T12:59:00.001-07:00

I can hardly believe that it is over a year since diagnosis and eight months since the six weeks of FSRT treatment finished. My first follow-up MRI from 29th March shows no changes at all, nothing, zilch, nada ......

No growth is GOOD NEWS.

But no sign of shrinkage or tissue death seems to me to be less encouraging as this surely means that my symptoms will continue. At least for the time being.

I have yet to see or speak to my neurologist and/or oncologist ......... although I am presuming that an appointment will be sent in due course. But further discussion does seem pretty pointless.

It is as it is and no amount of talking is going to change anything - "what can't be cured must be endured" as the saying goes!

But just at the moment I am a bit tired of putting a brave face on.

BACK IN WEBSPACE!!!

2010-03-14T13:58:00.000-07:00

What a frustrating 2 weeks ..... I lost my Broadband connection and it was like losing an arm! Not able to send e-mails, surf the web or post to my blogs was hell! So my apologies to those who were trying to contact me and received no answer. After many phone calls to the HelpLine (every time answered by a different person, meaning that I had to start my story all over again on each occasion), plus several tests of my modem router (done by me on their instructions) involving moving it from telephone jack to telephone jack, taking it to a friends house to see if worked there (it didn't) then borrowing THEIR modem router to test my connection at home again (there was none), I then had to wait for a replacement modem router to arrive.

Of course, the new one did not work either ....... so yet more phone calls and endless explanations! In the end it was decided that an engineer would come out and a charge of $200 was threatened .... I said 'Go ahead for goodness sake'. And finally it was discovered that the fault was at the Exchange after all - nothing wrong my end at all.

So it all ended happily in the end ..... I'm back online with a new modem router for no charge plus $20 compensation for the inconvenience BUT .......

HEAD NOTES

Saw the Neurologist two weeks ago. He does not think that I have PMR and agreed with my decision to wean myself off the Prednisone. However, he thinks that the headaches and nausea should be improving by now and wanted me to try Tegretol (Carbamazepine)....... a drug used to control epilepsy and some mental health conditions that is also sometimes effective in controlling certain types of headache. I said no thanks - I have had enough of these horrible drugs and their horrible side effects.

He thinks I am a 'difficult patient'!

But I don't want to take any drug that is going to give me more problems to deal with than I have already. If its not going to have any beneficial effect on the tumour itself and has potentially harmful effects then why take it? If that's being a difficult patient then GOOD FOR ME.

This time he did not do the full neurological assessment - just a reading test for eyesight, followed by a check of the backs of my eyes with the ophthalmoscope which he said "were not too bad" (whatever that means). After which he said he thought an MRI might be useful to check how things were going. The MRI appointment was sent very promptly and will take place 29th March. Hopefully it will demonstrate if there has been any change in the size or shape of the tumour. It will be really good if there has been no change (i.e. it has not grown), and if it has got smaller that will be excellent news. The alternative doesn't bear thinking about.

Twas the night before Neuro Appt ......

2010-02-23T01:09:00.001-08:00

... and all through the house, not a creature was stirring .....

but this blog has been given a positive review from Billie Mac at CRITIQUE MY BLOG. I was pleased that the blog seems to have something to appeal to readers ........ and I hope that it will provide a little information and support for fellow meningioma victims.

It never rains ......

2010-02-12T13:28:00.001-08:00

Another thing ..... having got off the Dex and the anti-depressants I found that tiredness and physical aches and pains were getting pretty bad. So off to the doctor's surgery last Friday and saw a very nice lady doctor (new to me). Having examined me and noted the tenderness over all my bones and joints (particularly my shoulders) she decided that I might be suffering from Polymyalgia Rheumatica (PMR).

Another problem has been swelling of the feet and ankles, for which I have been on diuretics for about 5 years now, ..... this problem was diagnosed as Idiopathic Oedema (which is doctor-speak for "we don't know what the hell is causing it"!!!). Apparently this can also sometimes be a symptom of PMR.

So great .... what would that mean? Well, the answer lies in STEROIDS ... Yikes! So am now on a large daily dose of Prednisone which should result in a miraculous recovery if the diagnosis is indeed PMR. The treatment plan I have been given is one week at 40mg a day (first week of which I have completed) then reduce the daily dose by 5mg per week until I am on a "low holding dose" that still controls the symptoms. Once that stage is reached steroid therapy may need to be continued for 2 years or more.

And of course I absolutely HATE the idea of being on any sort of steroid, let alone big doses, let alone for years ... but we'll see how it goes. If the symptoms don't improve dramatically by 10 days treatment then its probable that I do not have polymalgia.

So having now been on Prednisone for one week joints and bones are still stiff and painful to touch, although not quite so bad. And my swollen feet/ankles are back to their skinny selves (a combination of increased diuretic dose combined with the steroid, I think). Funnily enough my ankles went back to normal all the while I was on Dex, then swelled up hugely once I weaned off it ..... so what does that mean?

Oh ... and my next follow-up appointment with the Neurologist is on 26th of this month. Just a check to make sure I have no new neurological symptoms, which I haven't ... just the same old, same old. - headaches and nausea ..... you guessed it!!

But at least I look wonderfully well .... I know this because EVERYBODY tells me so! So in other words I am just a FRAUD!

And I can still play bowls!!!!!

10 months on ...... New Year musings

2010-01-14T13:11:00.001-08:00

As with all "New Years", the past couple of weeks has seen me in reflective mood! It is hard to believe that it is ten months since my first CT results, as in many ways it seems a lifetime ago, and I have been taking stock of where I am and what I am doing about it ........

One new resolution is to stop trying to live as if nothing is wrong and I can do everything I did a year ago with no effort. Truth is, I can't. There I've admitted it! - and I'm adjusting daily living accordingly, although it is hard to break a lifetime of "MUST DO".

There is no doubt that I have been trying too hard and this has probably not been very beneficial to my health in the long run. But there also has to be a balance between trying to be Superwoman and opting out of things just because I don't want to do them!!!!

Another resolution has been to avoid medications that have horrible side effects wherever, and for as long as, possible. So OUT have gone Dexamethasone and Prothiaden ........ and I do not feel any the worse for it (in other words the drugs were not controlling symptoms anyway). So I'm relying on Paracetamol and/or Paracodal for the headaches but have yet to find anything that will stop the bouts of nausea.

Dealing with symptoms has been a bit problematic over Christmas and New Year with some days being very hard indeed, but I'm allowing myself more 'nanny naps' and 'time out' instead of forcing myself to carry on as normal, and I am finding that this has reduced anxiety levels considerably too.

One of the side-effects of Dex was a hugely increased appetite so its strange to now find myself having difficulty with eating!! Many things seem to taste unpleasant or even downright nauseating and my previous ability to eat comparatively large portions has actually disappeared! I am also having difficulty swallowing tablets and hard foods so I think all this results from pressure on nerves by the tumour.

I am continuing with bowls following the Christmas break but have opted out of some of the regular tournaments for the time being. This will be less physically demanding and will also allow more time for my painting. More importantly it will hopefully lead to more quality time with friends and family.......... very important indeed!

However, when I look at the news reports from Haiti I feel terribly guilty that I'm even writing down stuff about my own troubles on this blog. Their suffering is so terrible. Thankfully it is possible to donate through organisations such as UNICEF ....... one way that we can give support no matter who or where we are.

'Tis the season ...........

2009-12-28T14:28:00.000-08:00

Well I'm a bit late posting anything for Christmas but I do hope you had a lovely one! We did ... spending Christmas day with my middle daughter, her husband and our two grand-daughters (12yrs and 9yrs) at their house, and then enjoying a second feast at our house on Boxing Day.

At least I am in time to wish everyone a

HAPPY NEW YEAR

hoping that people everywhere will come to feel hope and enjoy peace in 2010.

Head Notes - it's been quite an eventful time on the health front since my last post:

Dec 17th - ended up in A&E with fever, abdominal pain and passing blood in wee. Diagnosed as having pylonephritis .... treated with I/V antibiotics and sent home with 5 day course of oral antibiotics.
[N.B. Steroid therapy reduces the body's immune response to infection and can also reduce/mask symptoms of illness.]

Dec 21st - feeling quite a lot better but had developed an itchy rash all over my cheeks and down my lower legs. Very strange!
[N.B. ... the rash cleared up once I stopped taking the antibiotics so it must have been an allergic reaction]

THE BIG NEWS is that I'm at last weaned OFF the dexamethasone ............

Headaches - come and go day or night but not as often
Nausea - still a bit of a problem
Depression/anxiety - very much improved and I definitely do not feel so agitated
Sleep - am SLEEPING BETTER and for LONGER
Swollen face and abdomen - are reducing (albeit very slowly!)
Increased appetite - appetite now back to normal
Weight gain ... has been quite a lot so really will have to DIET (but in the New Year!)

One strange thing is that the pitting oedema of my feet and lower legs that I frequently suffer from DISAPPEARED while I was on the Dexamethasone but has RETURNED since stopping it.

Well, you can't have everything!

Brain tumour ... symptom control .... finding what works!

2009-11-30T05:09:00.001-08:00

As a nurse (albeit retired for 10 years now) I tend to think I'm slightly better informed about medications than Mrs Average, .... but is this a help when one is trying to cope with symptoms? Well I think it probably does! Any drug/medication that we take may have benefits but is likely to have possible unwanted side effects, so I have been considering my regime and options very seriously recently, because I want the best symptom control for the least 'collateral damage' from what has been prescribed for me.

MEDICATIONS I was already taking before they 'found' the brain tumour earlier this year

Bendrofluazide 2.5mg daily ............ a diuretic which was prescribed to treat hypertension (raised blood pressure) diagnosed about 15 years ago, and which became apparent quite suddenly and dramatically after a hideous headache that lasted about 3 days. B/P at the time was 185/150(increased from my usual reading of around 110/60).

Spironolactone 25mg - 100 mg daily ......... this was added in about 4 years ago when I started to get chronic swelling of my feet and ankles, and fluctuations in weight (due to fluid retention) of up to 4 kg from day to day. Again all blood tests came back within normal range and no explanation for the fluid retention was found.

Looking back I do wonder whether Feckit affects the functioning of my pituitary gland in some way (seeing as it is so VERY close to it) and messes with my ADH (anti-diuretic hormone/Vasopressin) function.

ADDITIONAL MEDICATIONS prescribed SINCE the diagnosis/treatment

Most of my symptoms (headache, nausea, insomnia) due to raised intra-cranial pressure and this needs to be controlled in order to prevent further damage to brain tissue ......

"The vicious cycle of pressure on the brain includes these things:

the tumour itself is a 'mass' exerting pressure, in the confined intra-cranial space
the tumour, as it grows, produces considerable quantities of fluid, lactate
there is pressure on healthy tissues which are then likely to swell and weep fluid (producing oedema (Americans say edema), causing more pressure
neurosurgery, opening the skull and interfering variously, can anger and inflame healthy tissue
chemotherapy is supposed to kill tumour cells (of course) and the death of cells causes inflammation
radiotherapy, same as chemotherapy, kills cells and there is inflammation," (Oz Brain Tumour Site)

DEXAMETHASONE is an effective drug for reducing swelling in brain tissue and comes from a family of drugs called STEROIDS. The above extract is from an excellent article on Dexamethsone to be found on the Oz Brain Tumour site, which also explains:

"When a person presents with a brain tumour, the symptoms are not from the tumour itself, the tumour does not alter brain cells. The symptoms arise from the mass effect. Symptoms vary from person to person with exquisite differences because of the location of the mass effect and because of the brain's complexity and diversity of functions. If, over the course of disease, the location of the lesion remains the same, the symptoms may remain or grow from the initial symptoms experienced. There may be new symptoms if the mass effect becomes much greater or if there is a 'recurrence' of tumour in another location in the brain.

The use of dex thus becomes very important, to oppose symptoms, to prolong life and quality of life. In addition, consider the reality that as pressure builds, the impact on the brain is unlikely to be a simple graph line upwards, things break and there can be sudden deteriorations from which it may not be possible to recover.... so you take dex to avoid such catastrophic disease 'progression'.

It will be evident from the preceding paragraph that:
dex may relieve symptoms, if there has not been irretrievable damage
renewed symptoms call for consultation with a doctor about upping the dose of dex... it is possible that the symptoms may arise during the treatment cycle or just in variations of effectiveness of the dex day to day, so a brief boost in dose may be of value
or renewed symptoms may mean that tumour is growing again, needing both management with dex and investigation and treatment if possible
It follows that it is important for patient and carer to report any substantial change in symptoms, any new symptoms, to the treating doctor... being a doctor familiar with use of dex in brain tumour. Do not expect every GP to be familiar with that, or every doctor on hand at emergency."

Possible Adverse Effects of Dexamethasone include:

Increased appetite, weight gain
Disturbance of electrolyte balance
Increased calcium excretion
Delayed tissue repair/healing, increased risk of infection
Muscular atrophy
Increased blood glucose levels/development of diabetes mellitus
Glaucoma, Cataract
Peptic ulcer
Immunosuppression
Headache, convulsions
Euphoria, insomnia, mood swings, personality changes, severe depression

Head Notes - I am currently on my 3rd period of treatment with Dex and have been taking it for about 6 weeks at a dose of 2mg daily (equiv. to approx. 13mg Prednisone). This dose does not completely control my symptoms of headache and nausea but, as I am experiencing some side effects , I don't really want to have to take an increased dose unless absolutely necessary!

DOTHIEPIN (dosulepin) hydrochloride

Dothiepin is a tricyclic antidepressant, used for depression and anxiety. Its site of action is the central nervous system (CNS) although the mechanism by which it produces its antidepressant effect, as with all tricyclic antidepressants, is unknown. Dothiepin has also been found to be useful in some types of neuralgia and facial pain.

Abrupt withdrawal may produce headache, nausea, convulsions, irritability,excessive perspiration and possible thrombotic (clot forming) episodes.

Adverse Effects occur in about 30% of patients and may be severe enough to discontinue the medicine in 10%.

More Common Reactions

Drowsiness, dizziness, tremor, confusion, paraesthesia, alteration in ECG patterns, disorientation
Dry mouth, urinary retention, sweating
Hypotension, tachycardia, arrythmias, conduction defects, palpitations
Changes in libido
Nausea, vomiting, constipation
Blurred vision

Patients and their families should be alerted about the need to monitor for the emergence of anxiety, agitation, panic attacks, insomnia, irritability, hostility, impulsivity, akathisia (motor restlessness ranging from a feeling of inner disquiet, often localized in the muscles, to an inability to sit still or lie quietly), hypomania, mania. worsening of depression and suicidal thoughts. Such symptoms should be reported to the doctor, especially if severe, abrupt in onset, or were not part of the presenting symptoms.

Head Notes - I have been on 75mg Dothiepin for several months now, which was prescribed a) for depressive symptoms and b) for facial/head pain. It has controlled the shooting pains in my face and left ear really well but feelings of depression and anxiety are still there and I get pretty emotional at times!

PROMETHAZINE hydrochloride (Phenergan)

Promethazine, a phenothiazine derivative, is a long acting antihistamine with mild atropine-like anticholinergic effects* and some antiserotonin (serotonin is a neurotransmitter) effects.

Promethazine has marked effects on the central nervous system (CNS) where it acts as an entiemetic, hypnotic, tranquilliser and a potentiator of anaesthetics, hynotics, sedatives and analgesics. It may enhance the sedative effects of CNS depressants including alcohol, barbiturates, opioid analgesics, sedatives, and other drugs. Interactions between promethazine and MAOI's and tricyclic antidepressants may prolong and intesify their anticholinergenic and CNS depressive effects.

*Anticholinergenic effects are caused by drugs blocking the action of a neurotransmitter called acetylcholine. Acetylcholine helps with memory, learning and concentration. It also helps control the functioning of heart, blood vessels, airways and organs of the urinary and digestive tracts. Drugs with anticholinergenic effects can disrupt the normal functioning of these organs.

CNS effects

CNS depressive effects: Sedation and impaired performance (impaired driving, incoordination, reduced motor skills, impaired information processing)
CNS stimulatory effects: Anxiety, hallucinations, appetite stimulation, muscle diskenesias, activation of epileptic foci

Common reactions include:
Dry mouth, epigastric distress, loss of appetite, nausea, vomiting, constipation, diarrhoea
Sedation, restlessness, dizziness, lassitude, incoordination, fatigue
Blurred vision

Less common reactions include:
Jaundice, tinnitus, insomnia, convulsive seizures, irregular respiration, tachycardia, bradycardia, contact dermatitis, urticaria, photosensitisation, pruritis, haematological changes

Head Notes - Following my visit to the Neurologist I was started on Promethazine with the aim of increasing my sleep time beyond 3 am and to contol the nausea during the night. I took the dose for two nights and had two wonderful nights sleep (the best for well over a year) BUT by the third day was feeling very restless, agitated and weepy. I felt that maybe I needed to talk things over with my GP which I did on Friday, and we decided to leave the Promethazine out and continue with Dex 2mg plus the Dothiepin 75mg. But I am to let him know immediately if symptoms get any worse and we can review the regime again.

So what is happening with regard to the effectiveness and side effects of my current regime?

SYMPTOM CONTROL

Facial pains - gone (great!)
Headaches - come and go two or three times a day, and at night
Nausea - not much in daytime but comes on really badly about 3am every night
Depression/anxiety - still very up and down

SIDE EFFECTS

Face and abdomen enlarging (Dex)
Increased appetite (Dex)
Weight gain ... not much yet but ...........
Blurred vision (Drs could find no neurological deficit on examination, - so ? Dothiepin)
Depression, agitation (? Dex, ? Dothiepin)

Well after all that ....... all I can be sure of is that partial control is better than none at all .... so I will just keep taking the tablets.

Month 9 since diagnosis!

2009-11-27T11:49:00.000-08:00

Well its just about 9 months since Feckit was found lurking .... it's still causing trouble but hopefully is beginning it's death throes! This past week has been pretty full on and I am quite tired, but feel as if I have achieved quite a lot.

Last Friday I started a pastel painting that I had been thinking about doing for a couple of months. John went away on a 3 day golfing weekend so I was able to go bowling and paint unfettered by cooking meals, household chores, etc. I even spent much of my 'waking time' at night working on the new painting finishing it by Sunday evening.

As well as having bowls matches on Sunday, Tuesday and Wednesday, I tutored a beginners workshop on Thursday for our local art group. They were learning about using pastels and most were completely new to the subject. We had a great day and they produced some amazing pieces - well done!

Headnotes

Yesterday (Friday) was my follow-up appointment with the Neurologist, Dr H-T. I was not expecting much change out of it because (as a nurse) I know that I do not have any neurological deficits as yet, i.e. everything is working pretty much as normal! And I also know that there is very little that can be done symptom-wise except to 'keep taking the tablets', as the saying goes.

So, as expected, my neurological assessment was OK, and we got down to talking symptom control. Sleep deprivation being a big issue for me at the moment another drug has been added into my current regime to try to help with this ........ Promethazine (an antihistamine), which has sedating properties. The headaches, nausea and insomnia are due to the brain swelling after radiotherapy (well I hope that's correct and its NOT because Feckit is continuing to expand!) and Dr H-T will write to David my GP to explain where I am currently at and suggest other treatment options should I need them. He will see me again in six months.

Rightey-ho ....... done and dusted, then? Nope. If I put on my nursey-hat there are several alarm bells ringing with regard to my current medication regime ........... but I really need time to think it through before I write more about that!

I can certainly feel another post coming on .....................

Month 8 .... worry beads are go!

2009-11-24T09:19:00.000-08:00

Haven't posted on here for almost 3 weeks ..... mainly because I haven't felt like talking about Feckit, who is just being a pain in the butt. Despite the Dex (2mg daily) and despite the Dothiepin (Prothiaden in UK) the symptoms are about exactly the same as they were before the treatments. So I guess things have swollen up in there from the radiotherapy.

I see the Neurologist on Friday. Don't really know what he can do (other than give me another neurological assessment for any deficits!). And I don't want to increase the Dex dosage, but anticipate that this will be suggested. Having been back on it for a few weeks (albeit at half the dose I was on last time) I am now in that awful depressive state again where a kind word makes me cry buckets and I feel stressed out at the slightest thing.

So what am I doing about it?

Well, firstly I have had to acknowledge that I have been pretty stupid trying to be Mrs Wonderful and continuing to do everything as if nothing has happened or changed! Something very fundamental has changed and, like it or not, I do not seem to have much in the way of reserves left .... So I am taking/have taken some practical steps to ease the load, such as:

1. Resigning my role as Secretary on two committees as from end of this month.

2. Playing lots of bowls (this is a pastime which completely takes my mind off Feckit), BUT have requested not to captain any team in competitions as this is STRESSFUL in the extreme!

3. Making more time for my art ....... as after a long, long spell of feeling 'ART-less' I am at last beginning to feel a real need to keep painting again. And it is totally absorbing when I do.

4. Allowing myself the luxury of taking a nap if and when I feel like one, .......... after all, who can stay sane on only 4 or 5 hours sleep a night for months on end?

I know that I look amazingly healthy and well in spite of it all, but steroids do that, okay? So stop telling me. I shouldn't have to justify myself.

Really, I shouldn't.

Month 8 ..... house, garden and head!

2009-11-08T20:15:00.000-08:00

Our house in when we bought it in 2005

Our house in 2007

Our garden was re-landscaped with a digger about 4 years ago and it is really starting to take shape - so today I remembered to take some more photos for our records. John is still working on the outside of the house (may it be finished one day!) and is currently putting in more steps and a raised vegetable garden behind the new enclosed deck at the side of the house.

Our house and garden now in 2009 -

Headnotes

Having got to the end of another 2 weeks on Dex I found that I was still feeling rotten quite a lot of the time (despite finding that I felt a lot better when I first went back on it!). So I contacted LK again who advised me to continue with it for the time being. Same dose of 2mg a day. Sleeping is not really any better ... I wake about 3am and pretty well stay that way ... I find the best thing to do is to get up and do some painting or play on the computer. It helps the headache and nausea to be upright.

Weight is still OK, not increasing ...... I think this is due to me playing bowls 3 or 4 times a week!l But my face is just beginning to get a bit rounder but HEY! - Jumbo's can be cute!

Another trip 'down South'

2009-10-28T18:02:00.001-07:00

Monday and Tuesday saw the Fab Four on a trip back to Invercargill to collect our paintings from the Anderson Park Gallery Annual Exhibition 2009. This is a fair old journey of over 3 hours drive ... the driving nobly taken on by Jill. However we had an excellent time ... much laughter and imbibing far more food and wine than was good for us! Di, Gill and Jill are such a great source of encouragement and support. And Gill, who has her own health worries to contend with at the moment, is also a fine example on facing up to life's little trials!

Headnotes

I have just about come to the end of the 2 weeks of Dexamethasone. This time the dose was 2mg daily instead of 4mg and I haven't started to swell up at all. In fact I think I have lost about 4lbs, which of course I am delighted to do! Sleeping is not really any better but the stabbing pains in the head and face have diminished to almost zero. Headaches are reduced to mainly odd sorts of 'squeezing' sensations! Very peculiar.

Birthdays and bad days

2009-10-15T12:18:00.001-07:00

Quite few birthdays occur in our family over Sept/Oct - middle and eldest daughters Mandy and Debbie, granddaughters Naomi (18) and Yvie (9), and this year my cousin Janet's 80th. And it was also my 65th last week .... quite a jolt to find oneself officially an OAP !!!

John made it quite an event by arranging a surprise party for me on the Sunday before, where he put on a magnificent buffet (organised and prepared all by himself) and plenty of liquid refreshment! There were 18 of us altogether, and it was a lovely occasion. Even the weather was kind enough so that we could all sit out on the deck for the first part of the evening.

Headnotes

Unfortunately Feckit has started playing up a bit over the last week or so .... headache, nausea and facial pains have returned with a vengeance. I contacted LK (oncology-radiology consultant) yesterday and she advised going back on Dexamethasone (steroid) for a couple of weeks and to resume taking the Dothiepin (tri-cylic anti-depressant). The latter is useful for neuralgia and she suggests that I will need to remain on it for at least a year. So much for trying to slim down a bit ....  both medications can cause weight gain!

Month 7 ...... the joys of friendship!

2009-10-01T12:38:00.001-07:00

I am so lucky to have such good friends .... here are some happy reminders of a great trip 'down South' a couple of weeks ago. Thanks, girls! - laughter IS the best medicine!

The Three Musketeers - Di, Jill and Gill

Jill, Liz, Gill and Me

a 'J(G)ill' sandwich

The famous signpost at Bluff (can you read it?)

Headnotes
I hardly dare to say anything but no headaches to speak of for three whole days. Even though I have a terrible cough following sort of flu-like symptoms my head feels so much better ............ but softly, softly just in case it doesn't last!

Six Months since diagnosis

2009-09-05T13:44:00.001-07:00

Our eldest daughter and grand-daughter (almost 18 yrs) flew back to UK on Monday after a lovely long visit, - just over 5 weeks. Thankfully the weather was reasonably kind, cold at night but sunny most days, so they were able to enjoy the great outdoors as well as family time. I think they loved the beauty of where we live and certainly got very keen on walking and jogging around the peninsular and on the two beaches. It was so lovely for us all to see them after a gap of almost eight years, and the Kiwi grand-daughters were thrilled to get to know their 'big' Brit cousin!

(L to R) - Naomi, Yvie, Amanda, Poppy, Deb

Headnotes - Facial swelling is gradually going down since stopping the steroids but body-weight is not reducing as yet, despite cutting down on meal-sizes and 'treats'. Weight gain can be a side-effect of both Dexamethasone AND Dothiepin .... so it's been a double whammy there. Will just have to continue to persevere in my efforts to lose it!

Symptoms remain the same but tolerable and no signs of any hair falling out from the radiotherapy ....

Week 28 ...... one week from follow-up appointment

2009-08-25T18:29:00.000-07:00

On 20th August I had my follow-up appointment with Dr L.K., my radiology/oncology consultant. We discussed a) how I was feeling and b) my current medications, i.e.

That I am managing OK but still having nausea/dizziness (occasional), headache (fairly often) and shooting pains upper face (often).
That I have weaned myself off the Dexamethasone because of the side effects - swellling of face and neck, insomnia, agitation, depression and weight gain.
That I have increased the Dothiepin from 50mg at night to 75mg, and that this helped in that I can now go back to sleep when I wake in the night.

L.K. also told me that they were confident that the FSTR regime I have been given will prove to be an effective one, and that:

The aim of the treatment was to destroy the tumour cells and prevent further growth.
Symptoms felt before the treatment started may not change.
Because meningioma cells are very slow growing there is no point in doing a further scan for at least one year, and I will be recalled for my first follow-up MRI in July 2010.
The full outcome of treatment may not be evident for up to five years.
Meanwhile I should get out there and get on with my life.

Getting on with my life sounds simple enough. Of course it does, silly.

Worry Beads - Brain tumour ... how was it for you?

2009-08-02T14:22:00.000-07:00

So how was/is it for me? - certainly something I didn't want or expect, and something that has changed me forever. Reading about other people's experiences on their blogs and forums really helps ... because I can see that my thoughts and fears are pretty much like everyone else's .... normalising the abnormal!!

One Brain Tumour (BT) sufferer, a lady named Lou, has written a little about depression and BT on the OzBrainTumour site - and the following list certainly ticks some of the boxes for me (in bold):

"What are some of the things that contribute to the down times with BT?"

* the physical position of the tumour itself can contribute as well as chemicals or hormones the tumour may produce

* feeling alone - no one really understands what you are going through even though loved ones and friends may try

* day to day living with symptoms that challenge your every waking moment

* everything you do is harder and takes longer

* you can't do what you used to do - your life has changed and no-one asked you

* everyone else seems to be getting on with their life and yours has come to a standstill

* you feel vulnerable, life is on shaky ground

* guilt for being a burden to loved ones and not 'pulling your weight'

* sadness - you grieve what you have lost

* you just don't feel 'normal' anymore and 'new normals' keep changing

* you can't sleep

* fatigue rules your life

* you can't work in the community anymore

* you 'look normal' so others think there is nothing wrong with you

====================================================

Week 25 ...... this and that

2009-08-01T12:08:00.001-07:00

KARITANE (where I live!)

My eldest daughter and grand-daughter are here with us for five weeks from UK! It is so nice to have them here, its been a long time since we were together ..... seven years. Despite it being winter the weather has been reasonably kind with quite a lot of sunshine, so they can get out and about exploring around the village, beaches and peninsula. We will be doing a few trips North, South and Central so that they get to see as much of this beautiful island as possible.

On the health front Feckit is still making itself a bit of a nuisance, which is to be expected as the treatments are only just finished. I have not been too happy on the steroids .... very depressed and absolutely wide awake most of the night .... so obviously feel very tired in the day! I have reduced the dose a little bit and started taking it in the morning only (instead of twice a day) .... apparently doing this can reduce some of the corticosteroidal side effects which have started already. I can see that my cheeks and neck are much rounder .... like a cheese, and I am so hungry all the time! Apparently, all of these are well-documented. Obviously if my symptoms of headache, dizziness and nausea get any worse then I will have to go back to the original regime. Strangely there does not appear to be any formerly agreed protocol for weaning off Dexamethasone ... but I put my faith in my old copy of the British National Formulary.

It may just be coincidence but since changing the tabs around I have had two distinctly better nights, so we'll just see.

Week 21 ...... the end of treatments

2009-07-23T13:47:00.000-07:00

Yesterday I received a 'completed treatment' summary from the radiology/oncology department confirming that I have received 28 fractionated radiosurgery therapy sessions and that I am currently taking a steroid, Dexamethasone, to combat my symptoms of headaches and nausea. It is expected that these symptoms will disappear in the next few weeks and the letter advises me who to contact should I wish to discuss any problems or have any queries. I have also been given a date for a follow-up appointment with my specialist radio-oncologist, LK, in a months' time.

That's great.

From a patient point of view I feel that it would have been more reassurring to have been given this information on my final treatment visit, in person, by one of the department nurses.

'Goodbye and good luck' just didn't quite hack it somehow.

Week 20 - end of RXT worry beads

2009-07-20T04:54:00.000-07:00

Well today was a bit of a momentous day, I suppose, because I had my last fractionated stereotactic radiotherapy (FSRT) session. I must say that it is a relief to have finished the 28 sessions and to know that there will no longer be a daily hike into the city Monday - Friday.

And yet it seemed so unsatisfactory an ending in many ways ..... I said my good-byes and my thanks to the three radiotherapy technicians on duty and wandered out of the hospital with John feeling totally FLAT.

Well, not flat exactly by sort of unsupported and quite scared. No advice sheet, no contact information, nothing. Now, I know that this is totally stupid because I have an excellent GP who I know I can turn to at any time BUT .............

What next?

Just have to wait and see, I suppose.

Week 17 .... and so it goes

2009-07-10T03:39:00.000-07:00

Well I had a really good few days last week. It must have been the new anti-depressants kicking in ... slept better, no headaches and no pains in my face, ear or temple. Marvelous!! Actually words cannot describe how wonderful it was to feel 'normal'. I have forgotten what 'feeling normal' felt like!

Sadly though, it didn't last and the symptoms have gradually returned over the past two or three days. And how. So today I have been advised to start on the dreaded steroids (in the form of dexamethasone, and only a smallish dose) in order to reduce the brain swelling and relieve the symptoms somewhat.

As I have written here before, I have been reluctant to resort to steroid treatment but I now feel that the symptoms are becoming so unpleasant that not to do so might actually lead to more damage to my brain than not taking them!

I have been told that I may only need therapy for about 4 weeks and then I can be weaned off them gradually. This is reassuring as there can be many side effects and most of them are pretty horrible ... although happily the risk is less with shorter courses and smaller doses.

Something about a rock and a hard place springs to mind.

Week 15 ..... ups and downs

2009-06-25T04:25:00.000-07:00

Hard to believe but I have had 11 treatments already ........ only another 17 to go. No real side effects yet although I do think head pains are becoming a bit of a feature .... shooting ones, particularly in my left temple and left ear.

Yesterday was a pretty terrible day. I woke up at around 3a.m. with the usual headache and nausea and tossed around until around 6.30 am. Then of course I fell asleep for an hour before waking up again feeling pretty groggy. Anyway I pottered around all morning and got a few 'secretarial' jobs done and after lunch laid on the settee for a rest before the daily trek to the hospital.

I found myself watching a programme about a neo-natal unit specialising in premature and 'small for dates' babies. It was very interesting to see what immense care and scientific know-how is put into keeping these tiny scraps going long enough for them to get a proper hold on life. Sadly some of them cannot be saved and parts of the programme were immensely harrowing ... which made me cry.

Whether this 'opened the floodgates' I really don't know but I seemed to spend the rest of the afternoon breaking down into tears, - at a friend's who we visited before leaving for the hospital, later in the treatment room at the hospital and again in the waiting area. Everyone was very kind, which only seemed to make me cry even harder. All in all rather embarassing.

I was seeing my consultant LK because of the broken nights and the fact that I felt that the nausea was getting worse. When I say nausea I don't mean that I feel I might vomit - it is more a 'swimmy' sensation, rather like motion sickness. LK discussed what might be happening and what we could try. She is not keen on starting Dexamethasone (steroid) yet because of the nasty side effects if used for any length of time ... and I totally agree with her and would rather wait until it is absolutely necessary!!!

The upshot of this consultation is that I have been started on Dothiepin, a tri-cyclic antidepressant, and this may help me in various ways. Although its mood altering properties generally take a couple of weeks to take effect it may also help me to sleep better at night straight away. It can also have some effect on nerve irritation which may help with the headaches and ear pains.

Anyway, that was yesterday and today is another day ......... I did sleep marginally better last night after my first dose of Dothiepin, and I have regained my composure somewhat.

Week 13 ..... framed up!

2009-06-11T21:12:00.000-07:00

Well ... I've been on a 3-day week for this first week of treatment, but for the next five weeks it will be a Mon-Fri job! These photos give an idea of how the head-frame is fixed and everything prepared prior to each session.

Head frame screwed tightly into place ....
my upper front teeth are embedded in a mould fixed to the frame!

I am assisted to lie flat and the head-frame is slotted into a fitting at the top of the couch.(and NO! that is not my teeth you can see and NO, I am NOT laughing!)

The technicians begin a series of precise measurements to ensure that
my head and the x-ray machine are aligned correctly.

The 'set-up' procedures take longer than the treatment itself - all together it takes about 25 minutes.

Week 12 ..... this and that sorted out!

2009-06-05T15:42:00.000-07:00

Have had quite a busy week bowling (indoors and outdoors), but also a few things have got sorted regarding Feckit!

1. Contacted KM regarding second appointment received for seeing the Neurologist. She was not aware of any untoward reason why he might wish to see me, and has seen and approved the treatment plan for the radiotherapy!!

2. I also asked whether last week's MRI showed any growth .... the reply was that it appears Feckit has got a little bigger in the area over the cavernous sinus. Little wretch!

3. Saw my neurologist, Dr H-T, who looked me over and prescribed prochlorperazine for the nausea .... will trial it for a month. He says he will see me again once the radio-oncology team have "finished with me". I said "yes, you'll have what's left!!"

4. Chris (my guardian angel in the radiology unit) phoned to say that treatments will start next week ........ the first on Wednesday afternoon. It will be good to get going.

5. Oh, and I also had a check abdominal ultrasound for an unrelated problem. Results next week.

Week 11 ..... second MRI and ?

2009-05-31T22:04:00.000-07:00

Well the second MRI seemed to go without a hitch ... not that they tell you anything with regard to what they have seen. The nurse who inserted the IV port in my arm and gave the Gadolinium injection (contrast medium) was English so we had a good old chat! She has only been over here three years to my ten. I was a bit amazed because they stopped the MRI almost immediately after the contrast was injected .... hardly more than a minute or two had elapsed. AND the injection was extremely painful this time around and I had a bruise and lump for several days after!

At the weekend I received a further appointment to see the Neurologist, which I wasn't expecting as he had previously referred me on to the radiology/oncology team. So I have no idea what the purpose of this visit will turn out to be. It's next Friday, 5th June.

But, naturally, 'being a patient' one is inclined to wonder and worry! So what's new?

Week 10 .... Hannibal Lecter's mother!

2009-05-24T18:40:00.000-07:00

Well this week saw the fitting of my head frame in readiness for fractionated stereotactic radiotherapy (FSRT) .... thankfully the frame is removable as it is not a pretty sight by anyone's standards! John wanted to take a photograph of me wearing this formidable piece of apparatus so that I might post it here on my blog .... but I decided that I would decline his kind offer!

FSRT is radiation treatment divided into multiple doses given on different days, and is given in the Dunedin centre using a modified linear accelerator machine via a removable head frame. The particular frame used is called a Gill Thomas Cosman frame, and comprises a horizontal metal 'halo' with adjustable sides which is fixed to my head via:

1) a mouthpiece to my upper jaw
2) an occipital mould which fits to the back of my head
3) two straps which cross over on top of my head.

The mouthpiece is an impression of my upper jaw into which my upper teeth fit when the frame is put on. The mould at the back is then placed into position and the whole thing is tightened up, and the overhead straps are put in place. Once the frame is on I am helped onto the treatment couch and lowered backwards in such a way that the headframe slots into an additional frame fitted to the head of the couch ... I am therefore truly 'firmly fixed' and cannot escape!!

It is of course of paramount importance that my head should be in the same position for each and every treatment (!) and this is checked every time by means of a sort of 'space helmet' with 'access ports' in it. Once I am in position on the couch precise measurements are taken of the relative position of my head by passing a measurement tool through the helmet's ports and noting the precise distance to where it touches my scalp.

We did a total of three 'practice runs' ..... i.e. the whole caboodle of fixing the headframe into place, climbing onto the couch, being lowered and fixed to the couch-frame, measuring through the 'space helmet' (I don't know what this thing is called) then taking it all off and starting all over again.

The whole procedure was then repeated one more time when I went for a check CT Scan and it was certainly reassuring to find out that each measurement was within approx. 0.5mm on each occasion!

I am to have another MRI on Wednesday, this time they will take many more images in order to build up a very detailed picture of Feckit's exact size and shape, but the FSRT may not begin until mid-June.

Week 8 .... Feckit and the Tooth Fairy

2009-05-05T19:20:00.000-07:00

Introducing 'Feckit' - my left-sided meningioma.
In this image its main body is the 'blob' right of centre and it
can be seen to be branching along the underside of the temporal lobe

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The tooth fairy

On Monday evening I saw the orthodontist who removed my shattered front crown. It came out relatively easily and the procedure was painless, thanks to plenty of local anaesthetic! Several NSAIDs and some Codeine Phosphate got rid of the after pains and its now healing well.

The 'tooth fairy' has made me a tiny little plate (which may look small but feels like a tombstone in my mouth!) with a single tooth on it. I am learning to eat .... but its quite difficult and the whole thing has a tendency to spring out of my mouth if I don't concentrate properly!

And for this joyful addition I have just paid $760.

Its amazing how difficult it is to get used to something 'foreign' in ones mouth ..... but it is all good practice for the mouth brace that I will have to wear during radiotherapy.

"Look on the bright side of life, .......... dee-dum, dee-dum, dee-dum"

Week 7 .... MRI result and consultation

2009-04-30T18:00:00.000-07:00

Sorry about the new Profile Photo but this looks pretty much how I feel after yesterday's news ... anxious and shell-shocked, and several years older!

Wednesday - MRI day.
This was not unpleasant, just strange, plus a little hard on the neck having to keep very, very still for 30 minutes or so. It was also incredibly noisy despite ear-plugs and padding! No word or sign regarding what they could see except to say that the images were good and clear.

Thursday - Consultation with LK, Radiation Oncologist
This turned out to be an incredibly long, long day as my appointment wasn't until 15.50hrs and the time seemed to drag intermidably. And then there was a long wait so I was not actually seen until around 16.50 hrs.

This time Mandy accompanied John and I to the meeting with LK, which also included a trainee radiologist and the radiotherapy nurse who will be looking after me in times to come.

MRI result: Meningioma at the apex of (L) petrous temporal bone extending over inferior aspect of (L) temporal lobe.

What this means is that, not content with having a fat little body cuddled up to the Internal Carotid Artery and facial nerves, Feckit has grown a trailing branch which is growing around part of the underside of the temporal lobe.

The concensus seems to be that this makes it a non-contender for treatment with either conventional surgery, one-session stereotactic radiosurgery or fractionated stereotactic radiosurgery.

Treatment:

Radiation therapy x 30 doses, delivered 5 days per week for 6 weeks. Course of treatment to begin in a month's time (this to give time for my broken front crown to be excised and the bone healed). From what I could understand the treatment may possibly include a mix of 3-dimensional Radiation Therapy and Intensity Modulated Radiation Therapy.

Three-dimentional conformal radiation therapy. Based on images from CT and MRI scans, a 3-dimensional model of the tumor and normal tissues is created using a computer. Beam size and angles are determined in a way that maximises the dose of radiation to the tumor, while reducing the amount of radiation exposure to normal tissue.

Intensity modulated radiation therapy (IMRT). Radiation therapy is delivered with greater intensity or dose to thicker areas of the tumor and with less intensity to thinner areas of the tumor. This is accomplished by placing tiny metal leaves in the path of the beam to reduce intensity and to customise the shape of the dose to the shape of the tumor.

THE GOOD NEWS

1. Feckit is a meningioma and not a malignant tumor.
2. It has not invaded the pituitary fossa.
3. It does not seem to have caused much damage to nerves, blood vessels or brain tissue as yet.

NOT SO GOOD NEWS

1. Feckit is in a difficult place to access.
2. It is not conforming to a shape suitable for FSRS.
3. Radiotherapy should kill the tumor cells but my current symptoms may not be relieved as Feckit may not be obliging enough to shrink away after treatment.

EFFECTS OF TREATMENT

Short term - possible loss of clumps of hair, mild fatigue, mild skin irritation, headache or nausea.
Longer term - likely loss of hearing (L) ear, maybe damage to (L) parotid gland, possible difficulties with other neurological functions e.g. memory, attention deficit.

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So today I have had a bit of a melt-down and felt highly emotional to say the least. Luckily I have a supportive family and some wonderful friends (at times like this you realise what a blessing true friends are) who I hope will understand that I just can't be expected to put on a brave face ALL the time.

Sometimes its good to let your feelings out.

Things will seem better tomorrow. And other platitudes.

Worry beads ..... only 3 more sleeps

2009-04-26T22:11:00.000-07:00

On my first visit to the radiology-oncologist it was suggested that I try Dexamethasone for a while to see if my headaches and nausea improved. Dexamethasone is a steroidal drug that is able to cross the blood/brain barrier and is useful for reducing swelling in brain tissue.

I was not very keen on this idea due to the possible side effects of steroids but LK convinced me to try a small 2mg dose at night. For the first couple of nights it seemed that I was sleeping longer before the nausea kicked in, but by nights 4 and 5 it was worse than ever and has been starting even earlier! I have also felt really lousy during the day for the past couple of days ... although I know that this is possibly nothing to do with the Dexamethasone. But as the drug takes from between 1-4 days to take effect I should be feeling better not worse by now!

The good thing is that my MRI appointment is the day after tomorrow and I will be seeing LK for the results the day after that ......... I am so relieved that I will not have long to wait between MRI and getting the results.

Only 3 more sleeps (well, you know what I mean) until the extent of the problem is revealed.

Hopefully. Whoopee!

Week 6 ..... first radio-oncology visit

2009-04-22T11:51:00.000-07:00

Tuesday (John's birthday) was my first visit to see the radiology-oncologist who will be looking after me. For some reason I had expected to see a male doctor but was pleased to find that I will be under the care of a woman. I say that because, with a few notable exceptions, as a nurse I have always found it easier on the whole to talk to women doctors professionally, socially and also as a patient. Anyway it looks as if I am going to be in good hands with LK. Very important to feel comfortable about that!

However, it was quite disconcerting to find the LK has some reservations about the CT scan as she thinks the tumour may be affecting bone as well as nerves and blood vessels. Its actual location involves the Left Cavernous Sinus and may extend further.

I have been searching for images that make sense of this for me!!! Not easy. This one gives an idea of where in my head the tumour is .... the dark areas under the part labeled 'sella turcica (bone)' are the blood filled cavernous sinuses which pass through the sphenoid bone which is shaped rather like a flying bat when seen straight on! The sella turcica is a depression in the sphenoid bone and is where the pituitary gland sits - in the pituitary fossa). As you can see this area lies in fairly close proximity to the back of the throat, nose and optic chiasma.

So having got to grips with where the cavernous sinuses ARE the next question for me to get clear in my own mind was where my dear little tumour (which I after Tuesday I have decided to christen 'Feckit') actually IS in relation to everything else .......

So looking at this diagram from the lower right there is a purple line labelled 'Dura and Arachnoid' - if one follows this purple line this is exactly where Feckit is growing, and it is encircling the blue area (one of the cavernous sinuses) and possibly the floor of the pituitary fossa. The diagram clearly shows the difficulties in treatment decisions due to the positions of the nerves, arteries and other vital structures.

The next image is a similar view as the diagram above but is from an MRI with diagrammatic explanation of structures.

The big question at the moment is how far has Feckit managed to affect the cavernous sinus and its contents and whether there is any infiltration into the sphenoid bone or elsewhere.

But fear not, Lesly, all will hopefully be much clearer after the MRI next week. Fingers crossed!

Worry beads ...... brain tumour radiosurgery

2009-04-12T16:09:00.000-07:00

Understandably enough, I suppose, I have been finding out all I can about the management and treatment of meningioma, particularly regard to radiosurgery, which the neurologist has told me is the most likely course for mine due to its location at the base of the brain. All I can remember from the CT pictures is that it is on the underside of the cerebellum and pressing on part of the brain stem. The MRI scan due at the end of the month will show its exact shape and whether or not it is encroaching on any major blood vessels or other vital structures.

My initial understanding was that my treatment might be by Gamma-knife as I had assumed (wrongly as it turns out) that this was the form of radiosurgery used at Dunedin Hospital but, having researched the subject a bit further, I find that this is not the case and Dunedin uses a different machine and method to that of Gamma-knife.

It certainly can all become very confusing due to the various terms used for describing different forms of cancer treatment, such as radiation therapy, radiotherapy, radiosurgery!! But I think I have got the gist of it now!

RADIATION THERAPY:

Whole brain radiation therapy (WBRT) can target large areas of the brain resulting in neurotoxicity to healthy brain tissue as well as tumour cells. Side effects may be acute (occurring within hours or days of treatment), such as hair loss, nausea, vomiting, severe cerebral oedema (swelling of the brain), or chronic such as brain atrophy, necrosis, neurological deterioration and dementia.

WBRT is the most damaging of all types of radiation treatments to the brain and causes the most severe side effects in the long run. Major studies and research are increasingly demonstrating that alternative forms of therapy, i.e. radiosurgery and stereotactic radiotherapy, can be as effective as WBRT but without the side effects.

RADIOSURGERY:

Radiosurgery is generally taken to mean the delivery of a single targeted radiation treatment to the tumour using narrow beams of radiation delivered from multiple angles. This limits radiation to healthy brain tissue to little or none and takes place in a one-session treatment. It is also called Stereotactic Radiosurgery.

The most common machine for this type of treatment is the neurosurgical instument called Gamma Knife which severaly restricts radiation to the tumour bed with negligable overlap to healthy tissue. Gamma knife is used specifically for radiosurgery to the brain.

Stereotactic radiosurgery can also be undertaken using Linac technology.

Linac is short for the term linear accelerator. Linear accelerator machines produce radiation that is referred to as high energy X-ray. A linear accelerator machine is designed to be a general purpose radiation delivery machine and in general requires modifications to enable it to be used for radiosurgery or IMRT (intensity modulated radiation therapy). Often, the modification is the addition of another piece of machinery.

Linac machines may be dedicated or non-dedicated. Dedicated linac machines have the additional equipment to perform higher level treatments permanently attached to the radiation couch. This is the preferred method.

Non-dedicated linac machines may be used for conventional radiation therapy in the morning and after adding the attachment, are used for higher level treatments in the afternoon. Non-dedicated linac machines are unable to acquire the same degree of precision and accuracy that dedicated machines may have.

STEREOTACTIC RADIATION THERAPY (also called FRACTIONATED RADIOTHERAPY/SURGERY)

Radiation is delivered with the same precision as in stereotactic radiosurgery but is divided into small, daily fractions over several days or weeks using a relocatable head frame. The intent is to reduce radiation injury to nearby brain structures while maintaining tumour control. The machines that do fractionated treatments are linear accelerator based.

According the International RadioSurgery Association:

"It should be noted that with daily treatments over time there is less accuracy than with one session radiosurgery as the skull cannot be targeted in exactly the same place (repositioned) and manner with each subsequent treatment as it was in the first treatment. IGRT (Image Guided Radiation Therapy) allows for each session to be reimaged before the treatment that can provide more accuracy than without the imaging. All high level linac machines are considered high-level and provide IGRT imaging including the X-Knife, Trilogy, Synergy, Novalis and CyberKnife. These machines would be considered comparable in effectiveness of treatment and outcomes.

However, the most precise, lowest cost and accurate treatment is still with one session radiosurgery."

So my little worries at present are:

a. It would seem that Gamma-Knife is the best method of radiosurgery but this is not an option (nearest Gamma-Knife unit is in Sydney).
No good wishing for the moon then!

b. Dunedin Hospital offers linear accelerator radiosurgery using X-Knife. From the literature it would seem that this is not quite as good as, but is next best thing to, Gamma-Knife.
How lucky that there is a treatment available. However, is it a dedicated or non-dedicated machine?

c. Will the team decision be to go for stereotactic radiosurgery (one session on one day)? Or might they feel that fractionated radio therapy might be more effective?
This might depend on the position of the tumour and what other structures are involved, so I must wait until after the MRI to find out.

d. An IMMEDIATE worry is that my temporary crown repair is falling away and the whole thing is threatening to fall out! .... and I don't see the orthodontist for another 3 weeks!!!!!

HELP!

Week 4 ..... triage and teeth!

2009-04-07T21:25:00.000-07:00

Triage

On Saturday I received a letter from a department called the Blood and Cancer Unit, Dunedin Hospital (a title enough to put the F.O.G. up anyone!) to say that they had received my referral from the neurologist and, after discussion (triage) my case has been graded as "semi-urgent". Semi-urgent cases are expected to be seen within four weeks of referral according to Government recommendation/guidelines.

Having got over a rather 'hoppity-skip' heartbeat on seeing the words "Cancer Unit", I quickly realised that this department is where the Radio-Surgery is carried out. So I shall expect to see the radiology-oncologist sometime around the MRI scan due at the end of the month ............ I wonder whether the 4-week guideline will be adhered to!

On Monday I woke up with nausea about 4.00 a.m. as usual but, having got up and played on the computer for a while, was able to go back to bed and sleep a bit longer. It was a nice sunny day and I actually felt energetic enough to get out in the garden and do some pruning and trimming - this is the first time for a very long while that I have felt 'normal'! The same on Tuesday and today!!!!!

Its really amazing to suddenly feel 'well' ..... I hadn't realised just how bad I was feeling until I stopped feeling bad. C-R-A-Z-Y!!

Don't know what has changed or whether it will last but by golly its nice.

Oh yes - must not forget the tooth!

..... as I was feeling A1 yesterday I had arranged to meet a girlfriend for lunch and a chat. Over lunch I became aware of a little rough patch on my upper front tooth. This tooth is a very old crown and has had a crack in it for a long time. As soon as I got home I whipped into the bathroom to check in the mirror ..... and the front of the crown promptly fell off!

Luckily I was able to get an emergency appointment with my dentist for 9am this morning. But the news is not good expense wise! First off antibiotics for root infection, next must go back tomorrow for impressions for a temporary plate, after that must wait to see orthodontic surgeon for removal of crown, broken pin and root. Then will come the big decision ..... to go for a plate with one tooth (moderate cost) or an implant (mega-bucks).

Mega-bucks looks favorite at the moment .....

"because I'm worth it"!!

Well, if Jane Fonda can say it ...............

Week 3 ...... being a patient

2009-04-02T12:12:00.000-07:00

It really is quite hard .............. while I have been 'A Patient' on other occasions this time around I find I have much less inclination to be 'Patient' about it! Although it is only 17 days since ThePhoneCall it seems like a month at least, and of course I was waiting quite a while before that (for the referral letter to go off, for the CT Scan appointment to arrive, for the scan to be reported on, etc).

I am not hot on waiting.

Still I suppose things are moving along ... time waits for no woman after all. And yesterday the appointment arrived in the post for the MRI. End of April.

Bad thing - its 26 more sleeps away.

Good thing - I am not an emergency .......... I think I rather like that!

Meanwhile I must continue to keep busy but also remember to take the odd moment to smell the roses and look at the view ....

Our house - a work in progress (patience needed)

The view from our lounge (instant therapy)

Worry beads ......

2009-03-29T10:55:00.000-07:00

What a strange situation! .... here I am looking, sounding and behaving exactly as I usually do (well, mostly) and yet I'm harbouring this little stranger! It's almost like being newly pregnant - who to tell and when? Will everything be all right? Plus the realisation that life will never be quite the same again.

Telling people
Who to tell is actually quite a difficult one. Of course it goes without saying that John and the children were the first to know, plus a very small circle of friends locally who knew I had been sent for a CT scan. Next we've told friends and relations in other parts of New Zealand and UK. But what to do about the 'wider circle' of friends and neighbours? I haven't managed to grapple with that one yet. When people I meet casually greet me with "Hallo, how are you?" they don't really expect, nor want, to hear "Not so good .... got this brain tumour."

It's just not done!

Another thing I've noticed about telling people is the tendency to 'play it down' .... I find myself saying "Luckily its non-malignant", "Luckily its only small", etc. Lucky? Why do I say that when it would be far luckier not to have it at all?

But I don't want to alarm or bore people, I suppose that's the truth of it. Which is one good reason for this blog - I can write down what 'alarms' ME and I don't have to worry about boring anyone!

I've read lots about meningiomas in the past two weeks, a small mountain of information, and I listened carefully to what the specialist had to say, but there are things that I cannot help thinking about.

The tumour
How long has it been there and how fast is it growing? Meningiomas are generally slow growing, possibly over many years, but they can suddenly speed up their growth and/or become more aggressive. A small percentage of meningiomas are malignant. Is mine?

Tumour site
Mine is in a difficult place to access surgically - but that's OK if they can zap it successfully with the Gamma knife. However, it lies adjacent to a critical area of the brain, the brain stem. Will any permanent damage be done, either through pressure from the tumour, or from the radiosurgery itself?

Brain stem tumours: "Morbidity is due to the location of the space-occupying lesion and compression of surrounding structures; because these structures regulate basic body functions of blood pressure, respiration, and swallowing as well as motor and sensory functions, compression can produce substantial neurological disability."

Symptoms
How do I know what symptoms are 'real' and due to the tumour? Sleep is getting harder to come by due to headache and nausea ... these are worse when lying down but also occur periodically throughout the day. It seems to me that all this has got worse over the past couple of months. I have been started on Cyclizine but there is no sign of improvement yet after 4 days.

Recently I've been getting sudden bad pains in the top of my head centering on the left side above my eye. And yesterday evening I had a truly hideous headache in the same place that lasted around 2 hours and made my eyes water! I asked the specialist last week how come these pains were on the other side of my head to where the tumour is and he more or less shrugged and said that headaches from tumours are not easily explained! Apparently the brain itself does not 'feel' pain but the lining does ....

All my neurological signs were OK on examination so that's good. And I know enough to be aware should anything new appear, like numbness, difficulty balancing, etc. Luckily. And there's that word again!

Week 2 ...... so it's a meningioma, now what?

2009-03-25T14:23:00.000-07:00

Well it has been quite a roller-coaster ride this week .... from that first telephone call to the neurology appointment. After the GP's phone call I was quite calm and controlled, but possibly due to shock rather than bravery! Facing a very busy week, which included friends staying for three nights, I found myself behaving like a normal, rational human being! At first, that is.

Who to tell?
After discussing it with John I decided that I would just tell the few friends that knew I'd been sent for a CT Scan. I did not want the whole world to know. It seemed to be courting a bad outcome somehow to tell people when I did not know the full extent of the problem ..... Superstitious? You bet!

The major question was when to tell my children in UK? My daughter here in Dunedin was fully aware and with me every step, but I felt it perhaps better to wait until I had full details before worrying the rest of the family. However, my daughter felt that they should know a.s.a.p. and contact was made. My phone and mobile subsequently became red hot (!) but it was good to know that they were concerned and supporting me.

Feelings
As I've said the first few days seemed calm, if surreal, but towards the end of the first week I became increasingly stressed and tearful. Any kind word and the 'waterworks' started! I seemed to go from 'in control' to defenseless in one fell swoop.

NEUROLOGY OPINION
Yesterday, 7 weeks + one day since my GP wrote the referral letter, I went for my neurology appointment at Dunedin hospital. The neurologist was very good - calm, quiet but very approachable and easy to talk to.

What/How big is it? - First up he showed me CT images of my tumour and explained them. He is confident that the tumour is a benign meningioma and its size is currently small at 2cm x 1.7cm x 1cm. There is no way of knowing how long it has been there or what its rate of growth is, but meningiomas are usually very slow growing.

Where is it? - Unfortunately this one is in rather an inaccessible place. It is positioned at the base of the skull and lies in close proximity to the brain stem (medulla oblongata). The vomiting centre is in the brain stem so that explains the nausea! Anyway a decision must be made as to what do about it as there is no 'spare room' down there and the brain stem contains the vital centres for breathing heart, etc (!). It is also where all the sensory and motor nerves pathways are between brain and spinal chord.

Posterior fossa meningiomas (10%)

Posterior fossa meningiomas lie on the underside of the cerebrum within the posterior cranial fossa. The posterior fossa is the deepest, most capacious and anatomically complex of the three cranial fossae, it houses the brainstem and the cerebellum. The brainstem contains all the cranial nerve nuclei and many efferent and afferent fiber tracts that connect the brain with the rest of the body. The cerebellum is the major organ of coordination for all motor functions and mental activities. Located centrally in the posterior fossa is the foramen magnum which is the large opening at the base of the skull through which the spinal cord becomes continuous with the medulla oblongata (part of the brainstem).

Posterior fossa meningiomas include tentorial, clival, cerebellopontine angle and foramen magnum meningiomas. Tentorial meningiomas are those located under the surface of the tentorium cerebelli. Clival meningiomas proceed from the clivus bone in the direction of the middle cranial fossa or the direction of the brainstem. Cerebellopontine angle lesions arise from the medial portion of the petrous bone. Foramen magnum meningiomas arise at or near the anterior rim of the foramen and cause spinal cord compression.

Tumors that arise in the posterior fossa are considered some of the most critical brain lesions due to the limited space in which they can grow and the potential involvement of critical neural structures. For instance they may cause facial symptoms or loss of hearing via compressing either the seventh (facial) or the eighth (acoustic) cranial nerves, respectively. They can compress the brainstem causing clinical manifestations of brain stem compression like cranial nerve deficits, or the cerebellum causing troubles with walking and balance, or the spinal cord causing motor or sensory deficits. Meningiomas in this region can also cause blockage of the flow of the cerebrospinal fluid (CSF), or hydrocephalus, causing the intracranial pressure to rise which usually manifests by headache, blurring of vision, nausea or vomiting.

What are they going to do? - first there will be a case conference to decide the best way of managing my tumour. The decision will be made through discussion between the neurologist, the neurosurgeon and the radiologist:

Waiting and watching is not an option now that I am getting symptoms.

It seems very unlikely that surgery will be attempted because of the difficulty of access and the risk to vital centres.

The most likely course of action will be radio-surgery using the Gamma knife machine. Dunedin has the ONLY hospital offering this special facility in the whole of New Zealand .... how about that for luck! ( 9/4/2009 EDITING to say I think I am wrong about this ..... Dunedin offers cyber-knife surgery but I'm not sure about the Gamma-knife ..... they are different and I will write about the two types of treatment at a later date)

ooooOoooo

Week 1 ........ unwelcome news

2009-03-22T18:38:00.000-07:00

Last Tuesday (17th March) - I received a phone call from my GP to say that a CT scan has revealed the presence of meningioma and I will soon be seen by a neurologist. My doctor was at pains to reassure me that this does NOT mean that I have "brain cancer" because a meningioma is a benign (non-malignant) tumour which grows on the outer coverings of the brain. It is also slow-growing.

Starting this blog is not particularly easy and this post is probably going to be the most difficult part about it! But finding out that I have a brain tumour seems to me to be a pretty momentous thing and so perhaps I should write things down while I still can. Although my ability to think, speak and write will not necessarily be lost in the weeks to come nothing can be taken for granted - so here goes!

I will admit that I did not have the presence of mind to ask any pertinent questions whatsoever - such as How Big Is It? or even Where Exactly In My Head Is It? No doubt I will find all this out when I see the neurology specialist. I just hope that there is not a long waiting list for an appointment.

Finding out about brain tumours

Of course, since being told of the CT finding I have had my nose hard pressed to the monitor as I searched the Web for information on brain tumours in general and meningiomas in particular!

Symptoms of a brain tumour appear to vary widely according to the size and location of the tumour. Some people have few, if any, symptoms until the tumour is quite large. My own symptoms have been very vague until the past few weeks when I have noticed occasional difficulty finding the right word(s) when writing or speaking ... however I had put this down to natural ageing and also to having lots of things going on in my life! The only regular 'symptom' has been nausea, accompanied by mild headache, that comes and goes in the daytime but regularly wakes me up about 3 a.m. making further sleep impossible. This has been going on for several months but I cannot pin point when it first started.

A useful and comprehensive source of information that I found is A Primer of Brain Tumours - A Patients Reference Manual published online by Massachusetts General Hospital and Harvard Medical School. There seems to be very little by way of information online originating in New Zealand, which is a shame. However, USA and UK seem to have a number of resources which I will continue to explore and, as I find links and resources, I will list them on this blog.

Meningiomas

Meningiomas arise from the coverings of the brain called the "meninges". There are three layers .... the dura mater (outer layer), the arachnoid (the middle layer) and the pia mater (inner layer). Meningiomas grow out of the middle layer and account for around 20% of all primary brain tumours (primary tumours are ones that have not spread from a tumour elsewhere in the body). If located in an accessible area, surgery may be the treatment of choice for a meningioma but I don't yet know where mine is. If the meningioma is sited in a more difficult area then partial removal may be possible, and some meningiomas may require additional treatment such as radiology or chemotherapy.

Though the majority of meningiomas are benign, they can have malignant presentations. Classification of meningiomas are based upon the WHO classification system.

Benign (Grade I) - (90%) - meningothelial, fibrous, transitional, psammomatous, angioblastic (most aggressive)
Atypical (Grade II) - (7%) - choroid, clear cell, atypical
Anaplastic/malignant (Grade III) - (2%) - papillary, rhabdoid, anaplastic

As an ex-nurse I remember that we used to refer to all tumours, whether benign or malignant, as SOL's (space occupying lesions) so although meningiomas are generally described as 'benign' they can still cause damage by taking up 'space' and pressing against the brain. I will feel happier once I know more about its exact size and position.... at least I think I will.

ooooOoooo

Margaret

2008-10-16T12:35:00.000-07:00

1941 - 2008

Remembered always with love