Monday, 28 December 2009

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



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!





Monday, 30 November 2009

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

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.




















Friday, 27 November 2009

Month 9 since diagnosis!


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 .....................

Tuesday, 24 November 2009

Month 8 .... worry beads are go!


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.



Sunday, 8 November 2009

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


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!


Wednesday, 28 October 2009

Another trip 'down South'

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.

Thursday, 15 October 2009

Birthdays and bad days

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!

Thursday, 1 October 2009

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


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!

Saturday, 5 September 2009

Six Months since diagnosis


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 ....




Tuesday, 25 August 2009

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

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.

Sunday, 2 August 2009

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


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



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

Saturday, 1 August 2009

Week 25 ...... this and that


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.


Thursday, 23 July 2009

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

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.



Monday, 20 July 2009

Week 20 - end of RXT worry beads

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.

Friday, 10 July 2009

Week 17 .... and so it goes

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.

Thursday, 25 June 2009

Week 15 ..... ups and downs

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.

Thursday, 11 June 2009

Week 13 ..... framed up!

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.

Friday, 5 June 2009

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

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.


Sunday, 31 May 2009

Week 11 ..... second MRI and ?


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?



Sunday, 24 May 2009

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

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.


Tuesday, 5 May 2009

Week 8 .... Feckit and the Tooth Fairy


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

------------------------------------------------------------------------------------------------

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"



Thursday, 30 April 2009

Week 7 .... MRI result and consultation

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.

------------------------------------------------------------------------------------------------

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.


Sunday, 26 April 2009

Worry beads ..... only 3 more sleeps

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!


Wednesday, 22 April 2009

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


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!

Sunday, 12 April 2009

Worry beads ...... brain tumour radiosurgery


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!


Tuesday, 7 April 2009

Week 4 ..... triage and teeth!

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 ...............




Thursday, 2 April 2009

Week 3 ...... being a patient

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)


Sunday, 29 March 2009

Worry beads ......

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 weren't 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!