How are we all holding up?

Hi Wee Me

I can relate to what you say about not knowing, though sometimes we have to remember that news can be good as well as bad and no amount of worrying will change the outcome one bit - much easier said than done though.

I remember after I had an angigram after a heart attack that the cardiologist came around and said "I wish I knew my arteries are as clear as I know yours are". - so the heath attack I had suffered was put down to being a virus.

<<hugs>>

Steve

Thanks src60. We already have the terminal diagnosis so it does kind of feel like the clock's just ticking down. Scary how fast the world can turn on its head.

x

Hi there,

Im surviving I guess is the best way to put it. My hubby has now been referred to a hospice for home support so we’re waiting on a call from them to discuss how they can help. All seems to be happening rather quickly and hubby very weak. I guess there is never a good time but I’m dreading him declining so close to Christmas, especially when we were hoping to make something enjoyable with a new grandson.

Hugs to you all x

Hang in there bramblejoo. 

Big hugs

xx

Hi all, other half had his covid test today, so hopefully chemo can start Wednesday.  We are hoping it can slow down the monster within. He was supposed to be decorating the christmas tree with our youngest tomorrow (making memories) but the pain has increased so much, so I'm hoping he will get up and supervise from his chair. I also want to broach the subject of making the children builder bears with a personal message from their dad. Just something they can press and listen to on the dark days. We spoke about it before and its something he wanted to do, but with chemo going on until the end of January I don't know if he will be strong enough to venture out in the new year. On a happier note his wet room was finished today so this evening he was able to get in and shower himself which was a big step for him, he has a chair he can sit in and everything is on hand for him, he had a smile like a Cheshire cat when he finally finished. Hoping to get the stair lift in before christmas now that would be a blessing, get so scared watching him going up or down the stairs, I try to walk behind him as he goes up just in case he falls, but he moans saying I make him feel like an invalid and he needs to feel like a man again. Well that's me for the evening hugs and love xxx

Hi wee me

I'm sorry to read about your husbands diagnosis.  We are in a very similar position.  My husband was diagnosed with GBM4 August 19, he was 49 at the time he's 50 now. He had surgery followed by 6 weeks chemoradiation.  The following 28 day cycles of temozolomide (5 on 23 off) were initially not too bad for my husband   fatigue was the worst effect he's had to endure. I wonder if your husband was previously fit and well whether he might tolerate the chemo relatively well? My husband is still taking the TMZ  just about to start cycle 12.  I have to admit that it is taking its toll now but until his last scan a couple of weeks ago his tumour showed no sign of progression despite his tumour being unmethylated.  So I think the chemo has given us more precious time together. Hopefully we have more time still to share. 

The prognosis seems to be standard for glioblastoma but its just a best guess. I very much believe that treatment shouldn't be at any cost and quality of time left is so important but I would advise listening to what your husband's oncology team have to suggest. Obviously it can only be a decision that the 2 of you make. 

Sending you both love and best wishes x

HI MInes.a.coffee.. Making memories is good. Love the Build A Bear idea. It's hard to keep them feeling like their real selves and not being over-caring if you get my drift. 

love n hugs

x

Hi LC 50. Sounds like our husband's are walking a very similar path. Mine turned 51 three days after his surgery back in September. He struggled a bit with the TMZ for the last week or so of the 6 weeks chemoradiation so still in the dark as to whether he's he'll opt for the 28 day cycle option...if it's offered . Time will tell.

Whereabouts was your husband's glioblastoma? My husband's was in the speech and language centre of the brain and that's bringing its own difficulties and challenges which may influence his decision about the TMZ.

Thank you for your message though. That's helped. As you say it's all about trying to get as much quality time as a family. 

love n hugs

xx

Hi wee me, 

My husbands tumour is in the left temporal lobe.  He struggles to find the word he wants but his understanding of language etc is ok. 

The chemoradiation is a slog and it does seem to get harder in the last couple of weeks. My husband struggled with the last couple of weeks of treatment. 

Was your husband's surgery to debulk his tumour successful? 

Xx

Hi LC 50  The chemoradiation is certainly a slog and the last week in particular was tough on him. Didn't help it's a 60mile round trip to the hospital.  The surgery went as well as it could have done. The surgeon had set the expectation that he wouldn't be able to remove it all but seemed to get more than he'd hoped. He gave us copies of the photos they had taken during surgery ...they're not for the faint hearted ...but you can see in the last one that there was still bits of tumour left. It looks grey/dead in amongst the pink stuff. 

It's all left the language/comprehension compromised . HIs recall is great in general but understanding of new fairly simple bites of information is poor especially if he is tired. His speech (use of words) is worse later in the day or if he's been talking too much all day. It's definitely worse after exercise. He used to always know when he was saying the wrong things but that's not been the case for the last 2-3 weeks. I'm hoping its just the cumulation of all the radiotherapy and that it might settle down but I'm not so sure.

One step at a time

xx