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?

Suexxx

Feelings

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.
Suexx

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.

Suexxx

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.

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.

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.

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.

Weekend

Saturday and i play a waiting game, just get through the day, then i am told at 5 pm a bed is ready for me at queens and i need to wait for ambulance transport, but they are busy so it could be any time, in the mean time husband and daughter come and see me, they have spent so much time back and forth and without them and my son i think i would have gone mad before now.

The shift change is happening on the ward for nights will i or wont i go? suddenly the crew from the ambulance arrive and they are both lovely really chatty and surprised to see me as i was on the 'stroke' ward as they called it and they were not expecting me chatting away to them.

We got to Queens by 9.45 pm and was i in for a shock back onto a six bay lights noise drips pingging away and a very busy ward.

Seen by two different doctors before i could just lie down, one who explained that the procedure i was to undergo was a brain biopsy,with added risks etc, really scared now.

After some time nurses come and chat to me i let them know that i do not sleep due to the steroids,welcome to have drinks if i want in the night, that sounds so good.

MDT day

Friday and my life is in their hands, nervous day just sat waiting just feeling numb.

Suddenly a doctor comes after lunch and says that i will be tranferred to Queens over the weekend sometime and i will have a procedure on monday, try to rest.

Cannot say much more just so scared.

The team visit me again

Thursday morning, ward round by the neuro team, straight to the point, glad of it really, there is a shadow on my brain, the scans have shown no other problems anywhere in my body, thats good news, we have sent the scans to Queens medical team and there is an MDT meeting where your case will be discussed and they will decide what the next move is.

I now know we are talking tumour, cancer here and my brain goes into overdrive, damm steroids.

The rest of the day is just a total whirl and cannot remember much more.

MRI scan

Wednesday morning and today is the big scan, taken down at 11 and set up with some music to listen to the carpenters have never sounded so good, even though i can only just hear it, the noise the scan makes are all different and it actually sounds quite comforting, flipping heck i really am out of it here.

Nothing more to say about the day really just longing for some sleep.

Yet another scan

Tuesday and i am told i will go for the CT scan, head chest and abdomen sometime today just sit and wait untill then.

I go for the scan at 2.30 and feel so uncomfortable during it as once again part is done without contrast and second part done with, but my arms have to be up and over my head through the machine so the injection can be done remotely, i must be glowing by now. This scan takes an age and i am so glad to get back to the ward after and have a lie down, not that i sleep even though i feel tired now i just cannot drop off.

Big day

Monday comes, been very comfortable in my room and all the staff seem really nice, but i did not sleep at all, the steroids are kicking in i think and i have just read most of the night, sit and wait for the doctors rounds.

The neurologist and his team come to me and i have all the same reflex tests and sensetive tests carried out and will be having another CT scan of head,chest and abdomen and a full head and body MRI scan, this really is getting scary now, i will also be referred to another hospital to the neurosurgery dept there to be aware of me.

Spent the rest of the day just resting and generally nervous.

That Scan

Anyway Saturday dawns and i am feeling just a kittle bit nervous of what lies ahead, chatting to some of the others on the bay i am on passes a little time and then a porter comes and takes me on the longest journey of my life so far, it did feel like it. He was chattereing away about all sorts and nothing but this was nice to hear.

I have a scan and the technician says to stay on the table a little while longer while someboby has a look at it, so the nurse who came with us stood chattering with me, looking at a beautiful beach picture on the ceiling imagining that a gorgeous man is stood there with me taking care of all my needs, rapidily bought back to earth when the technician says just need to do one more scan with some contrast in, all this is explained to me and away i go into the scanner again,m metalic taste in my mouth and feeling that i am peeing myself, all quite normal for this contrast, though not for me. Back to the ward and waiting.

Couple of hours later a doctor comes with a nurse, pulls the curtains round and sits down on the bed,wow this is something, he told me there is some inflammation and other arears of concern on my scan and i will be started immedialty on steroids to try to reduce the inflammation, then tells me that these could make me a little hyper.

PANIC PANIC PANIC, Rang my husband and just dried up, eventually got it out i needed him as soon as possible, he got to me and i just could not get it out to him, so got him to get the doctor as he was still there, sat on the bed again and was halfway through explaining what was found to him and i go into another fit, OMG, how much more can i take, but the doctor was just so good putting me on some anti-convulsive straight away and trying just to reassure both of us. Got to stop in hospital for sure now and will see neurology on monday.

The rest of saturday was just such a nightmare to me, just felt numb and scared, did not sleep at all, just laid crying most of the night.

A week of doubt

The day after this seizure i spoke to my manager at work who told me i was not to go back untill i had seen the neurologist, I was feeling preety much out of sych with the world anyway so no argument from me about this.

Thought i could spend some time just gardening and generally catching up on housework, yes that's right all the boring stuff.

A week later went up to the doctors, just cause i still felt out of sych, explained all about the stuff that had happened, lovely doctor said she would chase up the fit clinic appointment, went home and had a phone call to say my name was not there yet they will chase up next week again.

Husband is saying lets go out for a bit, so we do and enjoy a little local walk and coffee, just coming home and i have another fit, in the car and boy is this one different, it is just my left side and i can hear every word said to me but not talk back, he takes me to the hospital again and to cut the story short they admit me to the EAU and say a CT scan over the weekend is the plan.

The day my life changed!

The day started just like any other day, quite boring really, up, washed dressed, had some breakfast and off to work, The day passed me by in its usual coasting way, we were supposed to be having a staff meeting but that went out of the window cause nobody was coming, the few of us at work were sat round the table having a chat.

I suddenly felt pain in my left arm and pins and needles, thought it was a heart attack, but things were to change, I understand now that i went into a full seizure that lasted five minutes, paramedics were called and was concerned about me, going through the whole rigmarole of heart trace etc, but unable to get an ambulance to transport to hospital for some time, me reamaining very much out of it during all this time(maybe this was for the best).

When i eventally got to the hospital, all the bloods and everything were coming back ok, so after some intial concern i was simply refered to first fit clinic with nerology, packed off home feeling very tired and just a little bit scared.