We Talk Brain Tumours

Sigh.  It was about this time last year when Ali's symptoms started up.  Sadly, I've forgotten what we did on Valentine's night, but I do remember making pancakes for her on Shrove Tuesday as her arm was too weak to flip the frying pan.

And so I reach the stage where "this time last year" will always have a memory of Ali being ill.

Hey Pete, there is nothing wrong with "this time last year".  Keep those memories, they are so special xx

Hello Lovely People

I have been following this forum for a couple of weeks. I have laughed and cried many tears, following your posts. Your genuine support for each other is amazing, such a caring group of people.

Sorry, if this is going to be long-winded, you may think when you start reading that I am in the wrong group!

We went on holiday to Mexico in April last year to celebrate my husband ‘s 50th birthday.  He was a strapping, fit and healthy guy who hadn’t visited a doctor in over 15 yrs, but while there his testicles began to ache, which we assumed was down to the quad bike excursion, as after a couple of days, he was fine. On 1^st June, out of the blue, he just couldn’t pee.  We went to A&E and he was catheterised given antibiotics. He was examined by an Urologist at our local hospital 3 weeks later. She said the prostate felt hard and lumpy and told us to return 2 weeks later for a ‘trial without catheter’. This was unsuccessful and we were told to return in another 2 weeks. My husband was very uncomfortable and suffering pain in his groin and thighs, which they put down to the catheter, but I was unconvinced.  We sought a second opinion by another Urologist at a private hospital. Upon examination, he said “I am 99% sure you have prostate cancer and without treatment, you’ll live for a max of 18 months.” As you can imagine, our world came crashing down. Biopsies were taken and we were referred to an Oncologist at Guy’s Hospital and after various scans it was confirmed. Stage 4, terminal, with metastatic spread to lymph nodes, spine, clavicle, sternum, shoulder, hips, pelvis and femur. What a shock for my husband, me our children of 25, 23 and 20 and of course other family members and friends. It was such a devastating time for us all. My husband had surgery at the end of August to remove the catheter with a resection of his prostate.  As his disease was advanced, radiotherapy was not an option and in September he started hormonal therapy until such time as he became hormone-refractory (between 6-18 mths) and then he’d start on the chemo route. He had to give up his job as the side effects of the hormone implant and medication made it impossible to do manual work. He began to sleep more and more during September and October, became depressed and often would spend 2 days in bed, feeling generally very poorly.

November 9^th he suffered an excruciating headache. We saw the GP, who said it was probably a side effect of medication. Apart from a dull headache he was fine for a few days after but then I could see he was really going downhill, so we went to A&E. A scan was done, which they originally put down to a brain bleed/stroke but he was admitted and upon further scans, he was diagnosed with having a 2^nd primary grade 4 glioblastoma multiforme – front temporal lobe. My beautiful, wonderful, adored/adoring husband of 27 yrs, it was totally unbearable! He had de-bulking surgery on 2^nd December 2011 and we enjoyed a wonderful Christmas with family and friends. His memory, comprehension and word finding skills are certainly not what they were and he has no concentration or interest in the things he used to love, also he says some strange things and I think he is fixated with prognosis.

He started 6 wks of RT and temozolomide on 11^th Jan and since day one has been very poorly with nausea, fatigue, an emotional wreck and last weekend had 2 seizures. He literally only wakes up to make the hospital visit every day and eats one small meal. He really hates taking so many tablets and I feel so sorry and sad for him. I miss him, as he was before and our normal life so very badly and although I have a good network of support from family, friends and the hospice team, nothing can make up for our relationship, as it was. Having said that, I am also VERY aware that some here are in a much worse position than us – further down the line or indeed have lost their loved one and I am truly, truly sorry. What a f**king b**tard of a disease this is!!!

I will admit to finding it extremely hard and sad to read posts of what we can expect for the future, but I would rather know, in advance so that I can hopefully gain some strength from your strength, knowledge, inspiration, determination and courage.

Best wishes to you all

Kim xx

Pete. I know how you feel. Every so often( probably every day to be truthful), I have that "this time last year......... "  But we have many precious memories to help us move on and to help us smile.

Dear Kim. So sorry you are with us but you are with a good bunch of people who will listen and support you. I had a lump in my throat reading your post. What a journey you have been on. Please dont ever feel that any position on this train is worse than any other........it does not matter what stage we are at, this terrible disease treats us all the same, in torturing those that we love and leaving us feeling helpless.

Take heart that they were able to debulk and that he was suitable for RT and Chemo. Is he on Steroids??  It may be that he will start to feel better after the effects of RT wear off. I remember being glad when we were told that my husband's GBM was a Primary and that it had not spread from elsewhere until my GP told me that a secondary BT was easier to access. Read the posts on this Forum. There are some of our number who have stuck two fingers up at the statistics.

Wishing you strength KIm

Love to all

Cathi xx

Evening Kim,

My heart goes out to you, I am glad you have shared your sad sad story on here. It is a strange comfort knowing that you are not alone in your terrible journey. This bloddy horride disease takes so much of the people we love and devistates so many others in the proess. I am glad to here you have a good friend and family support net work, but how are YOU doing in all this?? Take care and keep posting.

Kate xx

Hi Cathi and Kate

Thank you so much for taking the time to reply.My deepest sympathy to you both and how very kind to be supporting others, still on this godawfu train.  In answer to questions: Paul is on dexamethasone steroid, which has just been reduced from 16 to 8mg per day, could it be the brain swelling from the RT thats causing these symptoms, as opposed to the chemo? If it is the chemo I am very fearful that he won't be able to cope with the double dose starting on 22nd March.

How am I doing? Where to start: some days - clinical, unemotional and in 'Carer' mode, others, stressed, frantic, nauseous with worry and scared sh**less, others inconsolable with tears and sadness, and occasional blind drunk days!!

I wish medics would not give people prognosis statistics, unless specifically asked, it is so damaging. My husband is an ostrich and would rather not know and being told has had an irrevocable effect on him, as I feel he is not fighting this, because he knows the outcome. I find that so, so frustrating and I am trying to fight it for both of us, when he has always been such a strong willed person, a real man's man and stubborn to the core! Maybe it's the tumour causing these personality changes, I don't know,

Thank you again, for listening

Kim xx

Hi like you i would rather know in advance what to expect as the illness progresses, my husband was diagnosed this time last year & had de-bulking op on 17th feb 2011( 60% of tumor removed) then went on to have the RT & Temozolomide which apart from loosing his hair ( which funnily enough is what bothered him most) he tolerated everything else really well, again the diagnosis was a grade 4 glioblastoma left frontal temporal lobe, we were told that with treatment he had possibly 12 to 18 months to live! in May he had a seizure which terrified us both as this had not been explained to us & had not been given any information on what to do, he was given medication to try & stop any further seizures(lamotrigine) and has since had a further two, after each his medication was increased the last one being in October!

As you have said your husband was fit & well never went to the doctor with anything, mine was the same; fit & well 54yrs old served 22yrs in The Guards, then started having headaches in December2010 we went on holiday to Florida & when we returned he went down hill fast. At his last MRI scan in Janary the consultant informed us the tumour had shrunk slightly with the treatment & we were to return in March, he is still on steroids(2mg) as when we try to reduce the dose the headaches return. Short term memory is very poor & has trouble with words, concentration & has no interest in anything, even the children, we have a 16yr old & 13yr old.He often becomes fixated on the smallest of things & also says some very strange& sometimes hurtful things! I often feel ike the man that was my husband for the past 18 yrs has already gone & the children have already lost their father, who was once so involved in their lives. It is so hard to try to keep positive sometimes when it seems he has given up, he won't go anywhere or see anyone. So now we have passed the year point I, like you am left wandering every day,...what next? whats going to happen? when will it happen? how will it happen?

Take care of yourself its a long hard road!xxxx

Hi Kim

I agree with you about prognosis & statistics, my husband was very positive & determined to battle this thing ....until the consultant spelt it out to him in quite a blunt manner after i had specifically asked him not to! after which you could almost visibly see all hope fade away from him!

I too have alot of days just like the one's you have mentioned above, it's like being on an emotional rollercoaster!

Take care of yourself

Jayne x

Hi Jayne

Seems we are experiencing much of the same. So sorry,  for you and your children, you're in this boat too and it's certainly very hard to cope with.  Like your husband, mine is so disinterested in our children, which is so out of character. Our eldest daughter is expecting a baby in May and  if honest has rushed into getting pregnant, she hasn't been with her partner  very long and they were planning a wedding first! I know in my heart, she was thinking it would give him a purpose and a reason for living, but he doesn't seem bothered and I feel pretty angry with him for that.

Please keep posting Jayne,feels good to know we are not alone,

Love and best wishes

Kim xx

My husband asked for the prognosis, and the consultant was pretty blunt. He then hustled us out of the room and we were left with nowhere to go for a cry and a hug except a crowded waiting room or out in public in the cafeteria.

Radiotherapy didn;t really help him.  His symptoms got worse and he has had seizures which have paralysed his left side and affected his thinking processes. He often seems to forget things - he is looking forward to a holiday we booked for May, and to a nephew's wedding in japan in November. My heart breaks for him - I don't know if he is whistling in the dark or genuinely believes he will walk around again. He's immobile at the moment.  He's coming home - at last - tomorrow, (if things go smoothly! Communication problems with the palliative care team are rife) and seems to believe that once he is home things will be just as they were before, we can go out for meals etc.   I can;t wait to have him home so I can look after him, but am scared it will be a huge disappointment to him.  This is such a vile cruel pitiless disease.

I think all we can do is support and be there for them.  Personality changes are, I suppose, something we have to expect, and depression and fear must play their part in it. It is not your dear husband whoc has changed - it is the cancer. I keep reminding myself of this and not take hurtful moments personally.