GAMMA KNIFE

Hi Ladies,

Thought I would up date you on treatment plans for the ‘Gamma knife’.

I saw a very nice Consultant, Mr Sabin on Weds at The Wellington, St Johns Wood.

After spending ages making sure my scan pictures had been sent and I also got a copy in my hand to take we couldn’t open the discs on either of his computers……(Don’t you just love modern technology) so the discussion on my brain mets happened around a very bad photo copy of my head.

I have been getting concerned about time scales as its now over a month that I had the MRI done but as far as Mr Sabin was concerned I am still very much early diagnoses and not considered very urgent.
My treatment for the mets seems to be pretty text book stuff and I should know at the beginning of the week when my date will be to go and get zapped.

The treatment will begin with a frame being screwed to my head for accuracy, this is done under local and apparently is the worst part.
Then I will have a new set of MRI scans done and apparently if they find more met not to worry as they can be treated at the same time.

Once this is done there is some planning time involved and then I will get my head zapped.
The gamma rays are done from I think over 200 points and are about .5mm accurate.
There is no recovery time needed basically I could go back to work the next day if I wanted.

I need to be in London for 7.30 am which for me is the middle of the night and although I’ll be staying over at a friends the night before I will stop in the hospital over night as its going to be along day and they book a bed for you anyway.

After 6 weeks I will go back and get re scanned to see how the treatment worked.

I did ask about success percentage and stuff but was answered in true politician style!!!

However in saying all that I feel very reassured about the treatment.
The MRI scans sound as they will be more High Definition and up to date technology and once I’m in the system I will be able to have this done again if ever the need arises.

In the mean time my Oncologist Karen is looking at starting chemo as my symptoms seem to be getting worse each day.
I am now struggling to get the wine glass up to my lips and my writing looks like a 5 year olds.
I have developed Lymphadema in my arm which is getting worse each day and now cloths are sitting funny on the shoulders as I have a bit of a hump between neck and shoulder.

We talk about wigs and hair loss but I am very conscious of what I look like, plus I’m eating like a woman possessed so with that and the steroids the face is getting fatter.
I didn’t realise what my vanity was like until now, well I say vanity but I’m just really aware of how different I look and of course theres the dodgy looking eye too!!

I live in a small village and so everyone knows who I am and what’s happening so today at the school it was really hard as I went along to the talent show and felt everyone looking at me……
Nothing worse than ‘that look’ or some silly cow you don’t like at the best of times trying to ask you if you had a good holiday!!!

Plus when people ask my my daughter who is 10 how I am she has of course worked out that she gets a great reaction by saying I have a brain tumor!!!

My boys have just had their 9th birthday, it was my appointment day so my My Mum took them to Game, toys r us and pizza hut.
They had a great time and on Mon Rob and I are taking them out for the day….
Skegness fun fair!!!
This weekend they have gone to their first cub camp…it hasn’t stopped raining all day!

Emily has gone up to my Dads for the week with her friend so I shall be enjoying some quiet time and hopefully not to much eating!!!

Best wishes to you all,

Tess.XX

Hi Tess

Such an interesting long post. I smiled at your description of a bad photocopy of your head…arrh modern tecnology.’

I know you are copying bits of my experience…really empathise with the huge hamster face (well mine is) and not being able to lift arm.

Oh the tribulations of cancer. Thinking of you and most of all hope the gamma zap works for as long as possible.

Jane xx

Tess,

This may not be of much help as you have other major things to sort and I am probably mentioning something you already know but as far as the lymphoedema in the neck area goes, is any kinesio taping possible at some point ? That area swelled up big time on me after surgery early last year to the extent that I looked like the hunchback of Notre Dame and clothes were all lopsided. My bcn immediately referred me for physio and she taped it every 10 days. An improvement was instant but I continued with it and I’m almost even now and discharged from physio (I had a frozen shoulder as well but they had to get the swelling down first).

Anyway, leaving this aside, I really hope the gamma knife is a success and leaves you much better.

Liz