Sunday, 13 December 2015

Neurological appointment at last!

This morning I went for my first neurological appointment for four years.  This time it was with a different neurologist and I was in trepidation in case he was as 'unapproachable' as the one I saw originally. But "NO" this one was very nice, seemed interested and talked TO me.

After I had explained the main symptoms currently bothering me (double vision, weakness in left arm and jerky left leg)  he gave me a neurological once over. Luckily he did not ask me to walk heel to toe in a straight line as I have tried this at home and I fall over!!!  

He says that there is definitely some 'slight' weakness in my left arm and leg, so I feel both vindicated (not imagining it) and a bit anxious (what is causing it?) !! But here is where we stand at the moment:

1. Visual disturbance .... no clues as to what is causing it as yet.

2.  Left-sided weakness .... could be a small blood clot following the radiotherapy or maybe the meningioma is pressing on the cerebellum. He cannot say anything for sure until he sees the films after my next MRI which I have an appointment for on January 13th.

3. He does not think that I have early Parkinsons disease, which is good to know.

So nothing more to be done until mid-January ............ will just let my body do the talking and rest up when I need to!!!

Friday, 16 October 2015

Going flat on my face!

One week ago today I tripped over and fell flat on my face in the supermarket car park! Luckily some very kind young ladies came to my aid and helped me to my feet, and one of them fetched a first-aider from the shop who took me in hand. How nice people can be!!

My face has been very swollen but not painful unless touched, so that has been a relief. However, now that the swelling is subsiding, I think things look a bit lopsided, - around my eye in particular. I did go to see my GP on day 4 but it was much too swollen for her to tell what was what, although she did test my jaw movements - which were normal thank goodness. She said to go back in a week if swelling not completely gone.




What an idiot! ..... now I really do feel old and wobbly!

Thursday, 24 September 2015

Not one of my best ...

Today has not been a good one overall.  Worked on a painting most of the day, which I have to say is quite a feat these days, but I am not too impressed with the result and it is likely to go for reclamation! (this involves blocking out the canvas in white gesso so that I can start all over again).

Wouldn't it be lovely if one could put oneself in for reclamation? And start all over again ... all white, new and un-scarred.  Now that would be quite something!

Anyway, by the end of the afternoon I felt very dizzy and nauseated. Luckily I did not have to cook our dinner from scratch ... just had to do some fresh rice to go with re-heated chicken curry. Easy-peasy, ... and it tasted nice! Well, more than nice actually!

I just wish these bloody head symptoms would fade away, rather than getting gradually worse. At least it seems that they are getting worse, but it might just be that my resistance is low. Whatever the reason/cause I am feeling pretty crap lately.

P.S.  The vision problems continue. Following my discussion with my family doctor I have received a letter from the hospital regarding being seen by a neurologist.  At least 4 months to wait.  Nice.

Probably won't be until after my next annual MRI in February so will work in quite well, do you think?

P.P.S. Skin cancers ... the one on my chest that was 'frozen' has gone, plus the one on my leg has gone following treatment with Flurouracil cream (anti-cancer cream).  The remaining one on my face is still there although it seems smaller. Good, eh?

Friday, 14 August 2015

More than I bargained for .....

So yesterday I had an appointment with my family doctor just to check my chest as my recent bout of 'flu has left me with the inevitable hacking cough,. One can never be too careful, especially with children and old people! 

Never one to waste an opportunity, I decided that I would tell her about 3 worries (limiting myself to the three "most worrying") and get my money's worth (doctor appointment = $43)!! 

Worry No. 1 - Hacking cough

Chest examination clear and problem limited to upper airway. It should settle in a couple more weeks. Dr prescribed Codeine at night as this acts as a cough suppressant and this may help sleep disturbance. Excellent news!

Worry No. 2 - Visual problems
I explained the latest issue with my eyes which is difficulty in adjusting my vision when I look to the side then try to re-focus centrally. This results in dizziness and some double vision on occasion. After some games of "Follow That Pencil" she asked me if I would like her to contact my onco-radiologist or neurologist. I informed her that I had not seen my neurologist for at least 4 years as my follow-up appointments had suddenly stopped and, as I felt they achieved nothing, I had not followed the matter up further. We agreed that she should write to a different neurologist to see if they felt a follow up might be called for, but she agreed with me that they (neurologists) are not the easiest people in the world to get on with!!!

Worry No. 3 - Skin lesions
Friday is "freezing day'' at our practice and I seem to have millions of skin lesions - freckles, moles, warts, the lot!! Anyway, I asked the doctor to look at several that were bothering me including three on my face. Two of these she declared as benign and gave them a good zap with the liquid nitrogen, but the third one turns out to be an early Squamous Cell Carcinoma (SCC). Two others SCCs turned up for the party as well ... a teeny-tiny one on my chest and a larger job on the back of my lower leg.

The tiny one got a ''zap'' but the other two are to have daily Efudix (Flurouracil) cream for 3-4 weeks and for review in one month. Hopefully this will see them stopped in their tracks, but if not then it will be the knife!

Needless to say that my friend 'Google' has been working overtime with regard to skin cancers! Being fair-haired and blue/grey eyed, and the wrong side of 50, are increased risks for developing a problem but no-one is immune. Where you live in the world is a factor too, with New Zealand having a very high incidence, but we all need to be Sun Smart.

Remember SLIP, SLOP, SLAP on that high factor sunscreen. And do it OFTEN!

Monday, 27 July 2015

Long time no see!

I must admit to having neglected my blog in recent months. Why? Well downright laziness may play a part, but there is the time factor .... juggling daily living, family and bowling with Facebook pages and this blog. Somehow this little journal gets left until last .....

My Facebook pages include one designed for meningioma sufferers but I do include stuff for those suffering from other types of brain tumour as well.  It appears to be going quite well and I like to think that it is of use to people.

Meanwhile Feckit and Fuss seem to be reasonably behaved and apart from trouble with my vision (which could be totally unrelated) I am managing pretty well on minimum doses of Amitriptyline and Carbamazepine. These help me get to sleep and also reduce the incidence and ferocity of facial pain. So things are good on that score!

Also good is the fact that my bowling partner and I won our club pairs championship which gave us entry into the Dunedin Champion of Champion Ladies Pairs Championship which we managed to win!

Then May/June we went to France for a month to visit our very dear French friends in Bordeaux and included a week's boating in a narrow boat on the Canal du Midi and 10 days stay at the Lac du Lacanau. It was all fantastic!

Please visit my Facebook page at:

Meningioma Living

Au revoir et a bientot!

Monday, 30 March 2015

'A new reality'

Where is she,

the me I used to be?

Fading, shredding, wafting free

in ragged pieces, desperately

spinning, shrinking, hard to see.

Pretending, as things become less clear,

that nothing's wrong,

I am still here?

Wednesday, 4 March 2015

Not a pain in the neck but a pain in the tooth!

Golly it has started again .... that awful pain in my left lower back molar!! And I really thought that those episodes of lancing pain from trigeminal neuralgia (TN) were under control with the 200mg Carbamazepine at night. But no! Those little jabbing pains in my left ear suddenly started to get worse then the brutal stabs in the tooth started.

I was pretty sure it wasn't actually my tooth that was the problem, as I have not long had my annual dental check-up, so I increased the carbamazepine to twice a day ........ and VOILA! It took a day to abate but things are now much much better with only the slightest twinge when I talk too much!

What are the symptoms associated with Trigeminal Neuralgia?

  • Pains are brief, lasting from seconds to a couple of minutes. Attacks of repeated brief bursts of severe pain may occur and last for an hour or more.
  • Pains are usually shooting, stabbing, sharp and electric-like.
  • Pains are usually triggered by light touch such as talking, eating or brushing the teeth.
  • Pains are located in the face, usually in the cheek, lips, jaw, palate, tongue, teeth, gums, side of the nose and, less often, about the eye and forehead.
  • Pain is usually on one side of the face, although infrequently, similar pains may develop at some other time on the other side of the face.
  • Pains usually respond, at least initially, to carbamazepine (Tegretol) or oxcarbazepine (Trileptal).

How do you distinguish tooth pain from that of trigeminal neuralgia (TN)?
Dental pain is usually provoked by direct percussion to a tooth or application of cold and is diagnosed by examination of the teeth and peridental structures. Trigeminal neuralgia is often triggered by light touch about the face and may be provoked by wind, shaving, talking, eating or brushing the teeth. Carbamazepine (Tegretol) or oxcarbazepine (Trileptal) will eliminate the pain of TN but not dental pain. The relief of TN pain from carbamazepine or oxcarbazepine is usually very rapid and may occur within 45 to 60 minutes.

It may seem a strange thing but there is a definitely a link between petro-clival tumors and trigeminal neuralgia, and it has been something of a relief for me to find this out I can tell you. It is always good to know that one is not being hysterical or a wimp!

Wednesday, 18 February 2015

Over-done or done-over!

Well I've seen the radiology-oncologist (RO) and also 'conversed' via telephone and text after a 'team meeting'.  The upshot of it all is that the measurements are STABLE (a good thing) and this whole exercise merely seems to prove how very hit or miss (even meaningless?) these measurements are (a bad thing) !!

RO said over the phone that the chief radiologist had 'looked back' and reviewed the films and that Fuss was currently 12mm and had not changed. However, having been told that it was 9mm in 2012, and at that point reportedly had not changed since seen on film in 2009,  I wondered which particular years had actually been reviewed.

Text messages followed:

Me:  Sorry to be a pain but it was the 2009 film?

RO:  No I think 2010.

Me:  First actual report 2012 but was on 2009 film. That is why I wanted to clarify.

RO:  We looked at the films. In any case no real change. It's good news.

RO is now definitely a bit huffy that I should continue to wonder why there should be a 3mm difference between the 2009/2012 measurement and the 2014/2015 measurement.

But "no real change" and "it's good news" ........ IN OTHER WORDS SHUT UP.

Wednesday, 4 February 2015

Not quite so done and dusted as I had thought ......

It seems from the MRI result that Fuss may have grown 3 or 4 millimetres since January 2013, according to my radio-oncologist. However, she does not seem concerned about it so this measurement may be of no significance ..............,

Wednesday, 21 January 2015

MRI ... all done and dusted for another year!

Feckit (2.4 cm)

Fuss (1.28 cm)

Had my annual check MRI on January 6th, but did not get the results until yesterday as my consultant was away on vacation. Those two weeks of waiting seemed like an eternity!

I was beginning to worry that feeling bad lately meant BIG things were happening in there and that Feckit and Fuss were having a fight!!!! Anyway, there is no real change so that is GOOD NEWS, even though Fuss seems to be growing at around 1mm per year! This is about the average growth rate for a non-malignant meningioma.

I have been told that I will have another check MRI next January .... no trying to fob me off with bi-annual ones this time! Good news all round then?