Friday, 5 November 2010

Mask pictures and fitting

Well my mask is made now, CT scan is complete for mapping onto the mask, all the marks should be on it ready when I have my simulation, not yet heard when this will be, but should be soon, it all went well even though it is just a bit scary, the mask fits like a glove over my whole head and is fastened down to what can only be described as a sort of peg board by two plugs each side of the mask, it is really quite strange to have this perspex form over my whole head and face, but I think I will get used to it and at least I know it will make sure that the radiotherapy is directed where it should be.

Just a little picture of the process if you can stand it, the one with the cap on is the first part, form the nose holes to breathe, then the blue stuff forms the mask, then plaster is applied over this to ensure the ridgity of the mask and the actual mask is then made from the inside of it.

Must admit I now just want to get my treatment started, I am being a little impatient though, as I know that my Brain biopsy has to be given 5-7 weeks to recover from and I will admit that I think I am gaining my weakness back in my left side a little more each day, so it is a good thing.

Had another letter from the hospital today and I have got to go there on Monday for a talk about the chemotherapy side of treatment, 2, 45minute sessions with the chemo nurses, more questions I can have answered, maybe even more that I will ask?


Wednesday, 27 October 2010


I never really talk much about my feelings, I was bought up in quite a victorian attitude family children were seen and never heard and all that sort of thing, but this diagnosis has really been making me think about how I feel and how do I tell people about how I am feeling, I am afraid, there really is no denying this because I feel that somebody has got a double barreled gun pointed at my head loaded and ready, but I am not ready for it to be fired yet and I want to give this disease a dam good run for its money, i really do not want to give in to it, why should I?

I am surrounded by my husband and my lovely twins, if this is all the support I get I am quite happy, I have not got any real friends, I dont know why I just never could make that contact, after a while I just drifted from people who I thought were friends, probably me really just my upbringing, I know I can come across as a bit cold really, but sometimes you just have to look deeper.

I am getting support from all the usal agencies and I am really greatful for this especially the Brains Trust(Meg Jones) which is a very specific charity for brain tumours, there are others out there too, but there is one particular person, Helen you know who you are, has been emailing me and just saying such good things and keeping me smilleing at times when I have felt awful epsecially when I was newly diagnosed and felt that a million people could be sat with me and I would still be the lonelyest person on this planet.

I am so sorry about all spelling and grammer and any other problems that no doubt someone will spot with this blog, but you see a brain tumour can change a person and mine is just where all this cognition takes place so you see I really am fighting more than just one battle, I really am fighting for my independance, my knowledge, my self and my idenity to remain with me. This is hard for anyone with a tumour, please think of this before any labels you apply to my waffle.

Tuesday, 26 October 2010

Mask fitting

Well I have had the phone call from the hospital today, my first mask fitting is on Thursday the 28th October, this date now makes all this so real now, but at least I can start my fight in earnest, but I do feel very nervous and scared, I suppose anybody facing there own mortality would feel like this.

I have to go again on Tuesday the 2nd for a CT scan to map my brain and more fitting and simulation, I suppose if this all goes well my Radio therapy will start on the following monday, wow this is real now, but I just want to get this started and fight this horrible disease, and at least getting it started and if the dates carry through I should have finished by the 17th December, what a date just in time for Christmas, hope I can be well as this may be the last, I certainly hope it will not be but I really do have to think of things like this.

Must admit it is a good reason for having a very quiet Christmas this year which is something I would look forward to I really do not feel like celebrating much, just sitting with my lovely husband and children and enjoying a quiet time of treasuring each other.


Friday, 22 October 2010

First oncology appointment

Well what can I say, I went for this at the City hospital in Nottingham, never been there before so found the whole place a little confusing at first due to lower and upper floor but got there in the end just in time, not kept waiting, great, a lovely Doctor who sat down and gave me the confidence to fight this, she also said to me, and this made me feel that I am not as mad as I feel, that it is time to sort your affairs out, not bluntly, just reasureingly, believe me since last friday when I got this devasting news about my future, or lack of, all I can think of is organising my funeral, you see I know that that is the worse part of the final arrangements having seen people doing this at work, I know that my husband and children would just go to pieces when the end happens, i will take comfort myself in knowing that this will be carried out as I want it to be.

The funeral will not be a standard one as i want to be buried in a green burial ground, there will be more of a secular feel to the service, having some poems read out and a short prayer,I will have a hymm which will be 'All things bright and beautiful'. I have always loved that one, it reminds me of spring and that will always be my favourite season, the woodland site you can have a tree planted and I choose a cherry, Always the first blossom of spring, bringing new life. Genesis singing 'Follow me follow you' Listen to the words closely one day they really mean something to me. And last but not least 'I did it my way' because yes I did.

If there is one thing you should do during your life it is organise your funeral, I really am finding some peace in doing it.

Anyway back to the oncology, it will be six weeks of five days a week going for radiotherapy combined with Chemotherapy, they have also asked me if I would like to be invovled with a clinical trial for Avastin therapy for my type of newly diagnosed tumour, it will be a blind trial where I will not know if I recieve the actual drug or the pleacebo, but I say bring it on, if my fight can give someone in the future some hope against this horrendous disease, then I am up for it.

As you can tell I feel quite serene today, dont really know why, I think I am begining to accept this now, not giving in to it though, Had quite a long chat to my husband at 3.30 this morning over a nice cup of tea, I really like this, I feel that we are so close still and silly little things like this are so comforting to me, although he could make the tea a little less milky, I know he is thinking of me spilling it down myself.

Wednesday, 20 October 2010

Better day

A couple of days sunshine and some time out of the house, enjoyed going for a walk even though it can be quite a struggle on uneven ground, spent some time crafting today too, will have to show you some of my crafting, I know it is not that good but it always helped me destress before all this happened to me, so I hope it will still help me now.
My first oncology appointment tomorrow, pretty nervous about this but at least things are moving on now and I should get timetable of treatment, possible six weeks of going five days a week to City Hospital for treatment and then chemo after.

Fight the good fight with all my might.

Monday, 18 October 2010

Glimer of hope

Today I got out of bed and my left arm does not feel as weak and strange, could this be a sign that the steroids are kicking in and the inflamation on my brain is begining to reduce, could it be that my brain is recovering from the surgery? So many questions but never enough answers.

This does make me feel just a tiny bit better, just being able to think that my leg weakness will be the next thing to come back, if that sorts out i really want to go back to work i simply cannot bear more time sat at home thinking about what will happen to me and my family in the future, and all this total inactivey it makes me feel so low.

Sunday, 17 October 2010

Staight to the point

For a while now I have been trying to make sense of what has happened to me in the last four weeks and letting you know how my thoughts and feelings are going, guiding you through all the tests, the hospital, but today I have decided to be brutally honest and reveal the diagnosis that I recieved on friday the 15th October, my real life changing day, the one I honestly thought I would never hear, there is no easy way to say it.

I have grade four glioblastoma brain tumour, three small ones all together on my frontal lobe of my brain, this is already affecting me by making me suffer weakness in my left hand side and my concentration is not as good as it used to be, basically cancer does not get any worse than this, this is not a winable war for me and my life is going to be shortened, how long have I got?nobody knows, how long is a piece of string.

I see the oncologist on thursday afternoon to see what treatment regime I will follow but it sounds like it will be a combination of radio/chemotherapy, quite a greulling one but hopefully one that will give me a fighting chance for more time, then it will be a case of batteling the tumours each time they grow back, the treatment will not kill them it will just shrink them each time, but the time will eventually come that my time will be over.

There I have said it know, the last few weeks have been a bolt from the blue for me and I am shocked at the results of all this and i never dreamed that these would be so bad, my thoughts were constantly that this was just a small glicth in my life and that I had got another thirty odd years, just goes to show how much we take our lifes for granted, well stop it now, get out there and take life by the scuff of its neck and enjoy it, make it happy, make it scary, go ride the roller coaster that you have always been scared of, i dont think i will have that chance but believe me if somebody would take me and put up with my screams and terror it is something for me to do.