GBM 4 - New Carer

[Trish]

I'm new to this, but I'm hoping sharing this with other people will help me through my journey as a carer. My husband Nigel was dx with a GBM 4 on his 50th Birthday - 13 August 12. First debulking completed 16 August and second 16 September. We were advised a life expectancy of 6- 12 mths. Nigel's tumour is located in the back of the brain on the right hand side which has effected his sight - he has lost the ability to drive or ride his motorbikes, but has accepted his loss of independence gracefully. Radiation and chemo nearly completed with 5 treatments remaining. Nigel has had no side effects with the treatment just a bit if tiredness of which one hours sleep helps him during the day. Dex medication has made him very weak in the arms and legs and struggles with menial tasks during the day. Nigel is on 8mg of dex a day to assist him with the tumour and another disease that he has had for 20yrs and requires steroids to manage this disease. He is on no medication for seizures as he has not had a seizure yet. I have found reading the blogs very interesting on this site and know that I am in for a rough ride. But to date we have had it easy and enjoying our time together and getting out and about and enjoying life. I am so grateful that he still has his warp sense of humour, intelligence and communication is good. Not sure how long for but I will take what I can. I look forward to the groups support in need.

[jan52]

You sound like you both have a wonderful outlook Trish. I am happy to read that he is able to get out and about and enjoy life, I hope that he stays that way for a long time to come. Humour will be your savior in times to come, tell Nigel to hang onto that. Dex does have its drawbacks but Thank God for it anyway, to manage symptoms. You will find great support here. If there is anything that you are wondering about or just need to chat I'm here :) Jan - wife and carer of John who passed on Sunday (GBM Grade 4)

[Trish]

Jan, I am sorry to read of your loss - my thoughts are with you. Thank you for your offer to chat, I am sure I will take you up in time. Trish

[Minx]

Hi Trish, I have found everyones journeys are so very different. Our GBM 4 journey so far has been smooth with few bumps along the way. My partner also still has his warped sense of humour thank god as you really do need it at times. He sold his very much loved motorbike, as he could not look at it each day. He is now going through the process of gaining his driving licence back. He starts his 10th chemo cycle tomorrow, so a quiet weekend at home as he does get fatigued. MRI next week so we have our fingers crossed. Min

[Trish]

Hi Min, I feel for your husband regarding his motorbike. My husband would be devastated if he sold his bikes. We have about 8 but not all on the road. I take him for some rides and then rely on others to take him out. He also restores them, but finding this hard as concentration is not the best and tires easy. We start our first chemo program early Jan and not sure what we are in for. Fatigue will be the killer I think. Good luck with the licence process as this is something my husband will not be able to get any time. Please share the MRI findings and will be thinking of you next week. Trish

[Minx]

I got it wrong was 11th cycle of chemo! MRI was not good new tumour close to original site, it came as a shock to everyone including our oncologist. Have to see when he can have craniotomy but hoping it is before xmas, whats another christmas spent recouperating from surgery? Needless to say driving test is off 😞

[Trish]

Hi Minx, I am so sorry to hear the news especially so close to xmas. Again I feel for your husband regarding his driving test. This thing is really an evil beast. Is this your husbands second craniotomy? and 11 cycles of chemo is quite a lot to go through. Our MRI after radiation is not until 5 Feb, again another waiting game....... We have booked a weeks holiday in Tassie mid Jan so something to look forward to. My husband ended up in tears yesterday - his body is not keeping up with his brain as the arms and legs are so weak which I think is from the Dex.. I so feel for him as he will never get off the dex due to his other health issue Addison's Disease. Everything is catching up to him, tremors in the arms and hands along with cramps in the hands each evening. Now that we have finished the radiation I am hoping he will pick up. Though my sister who works for a neurosurgeon in Sydney feels that they could be localised seizures. Well Minx you take care of yourself and your husband and let me know how things go over the next week or two. Trish