Husband with Grade 4 Glioblastoma

Thank you so much. It means a lot to know that someone knows exactly what I’m going through. Today has not been a good day for him. He’s in the depths of despair and just wants to keep going back to bed. He’s also gone from eating constantly (steroids) to not having any appetite at all. I know it’s such an awful time for him but he’s so negative and depressed. I wish he’d talk to someone outside of the family, I’m sure it would help 

No need to thank me. I get it. It's not been the best of days around here either but...it's just one day. We put it behind us and we dust ourselves and we try again tomorrow. Hopefully it'll be an easier one.

Hang in there

love n hugs

Wee Me xx

That’s exactly the positivity that I need. You seem to know exactly what to say 

I feel like I can relate to what you're going through.  My husband had his 6 weeks chemo and radiotherapy and he got through them better than we thought. He said that he didn't feel anything when he was having his radiotherapy and he didn't have any real problems with sickness either.  He did the first half using patient transport service and for the second half I booked 1/2 days off work to take him.  If you  have friends and family who can help with transport that would be good.  The hospital were regularly changing his appointment times during the 6 weeks.  During the chemo and radio he was still quite active although he would have a nap through the day.  After the 6 weeks he was extremely tired - sleeping many hours through the day - and came down with a chest infection at the same time.  Next month he will go back on Chemo (1 week/month for 6 months) and I don't know what to expect for that.  Mood swings and low morale are the worst. Currently he has weakness in his legs, struggles with stairs and uses a walking stick sometimes.  My husband won't ring Macmillan or Samaritans it all comes to me.  One day I did get him to speak to the Clinical Nurse Specialist and that helped to put his mind at rest about his symptoms. 

My husband has convinced himself that he’s going to feel desperately ill throughout his radio and chemo. He’s so down and depressed, he says that he can find no joy in anything, it’s so sad. I want to try and take him away for a few days after he’s had his mask fitted on Thursday but he says he has chest pains just thinking about it, but he can’t sit and stare at the 4 walls, he’s just going to get more depressed 

Hi Mary 

My husband was very apprehensive too before his 6 weeks.  We made sure we had things planned to look forward to, we went to a few concerts during his treatment & some nice meals out. It gave us both something to focus on and enjoy together.  He was ok throughout the treatment overall but just needed to rest and slept quite a bit.  My husband was a bit like that too to start with as it's such a shock. We tried to create some joy and happy memories whilst he's well enough.  We haven't asked for any timescales,  we know the statistics but also know that these are just averages.  I feel your pain though and as hard as it is I'd say having things to look forward to is important if he can. Sending lots of love xx

Hi Jobo, I know it’s all been such an emotional rollercoaster so far and I know he has to process everything that he’s going through, but before his op he’d convinced himself that he’d be ok after the op and he could start to recover. I just don’t want him to lie in bed all day when he could be doing so much. Does that sound bad, should I be letting him wallow or should I try tough love 

Its so difficult to know what to do for the best.  We talked about it and think living for today is the only way we can get through it. He does have some dark days but I try and remind him of the better days and that these will pass.  It sounds like the op went well which is very positive.  My husband was determined to stay as active as possible and we have a little dog that he takes out everyday (even though I could do it!) This helps a lot.  

As i'm reading other responses I'm thinking it's normal for patients to be worried about chemo and radiotherapy treatment because it is an unknown.  We were told the purpose of the treatment is to preserve quality of life.  My husband thought he was going to be sick every day with the chemo and radio.  He invested in a bucket to put next to the bed just in case he needed to be sick quickly.  It didn't get used.  He said to me should we put a kettle and mini fridge in our bedroom so he can make cups of tea.  I told him no because he will still be well enough to go downstairs and make a cup of tea in the kitchen - and he was well enough to make drinks and even to cook tea. (cooking is his passion)  He told me he coped through radiotherapy by closing his eyes and meditating.  Reading the leaflets there are loads of side effects that are listed and most of them my husband didn't have.  He thought his hair was going to fall out from day 1 and wanted it cut but I told him to wait and it wasn't until almost the end of treatment before it started coming out and we cut it with a number 2.  His hair thinned slightly in the area where the radiotherapy was done but he still has hair.  We thought it would be a completely bald spot but it isn't.  He still has a fair bit of hair in the affected area.  Being in a low mood is a harder one to tackle.  Boredom is another tricky one.  I could still do with advice on these things.  Brain fog, mood swings and struggling to concentrate is something we're having to contend with.  Tiredness - Sleep when you need to sleep - don't fight it - but still try and stay active if you can.  One thing that has helped is having family and friends come around to the house for a visit and a chat.  Sometimes hearing about other people's lives for a bit can help take the pressure off and lift your mood.   Of course your loved ones will have lots of questions about the cancer and the treatment and people are usually taken back when we've have to explain it is terminal and that there's no knowing how long, etc.  We took the dog out to a lovely park for a short walk and the fresh air helped.  My husband has looked at quite a few brain cancer posts and connected with people who have been through it who have given him words of encouragement.  He keeps a journal of his experiences.  He also has a small notebook for writing down questions to take to his appointments.  Some encouragement we got along the way:. Cancer or not, none of us really knows how long we have so we should make the most of life.  Any day we are breathing is a good day.  Best to think about the things you can do and enjoy rather than worry about the things you can't do.

I’m hoping that once he starts the treatment and he’s getting on with it that he’ll settle down a bit. He’s actually physically fit, he’s just got it into his head that he’s an invalid. I’ve said exactly that today, that he should think about all the things that he can do not what he can’t. Then i feel guilty, because although as a family we’re all going through it , it’s him that’s got the actual tumour