Monday, 6 December 2010

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

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 s--t. 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.


Wednesday, 18 August 2010

Marbles



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!


Sunday, 27 June 2010

Catch up .....

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.


Sunday, 2 May 2010

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

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 ........

Tuesday, 13 April 2010

8 months since radiosurgery - MRI result

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.



Sunday, 14 March 2010

BACK IN WEBSPACE!!!





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.





Tuesday, 23 February 2010

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

... 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.


Friday, 12 February 2010

It never rains ......

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!!!!!



Thursday, 14 January 2010

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

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.