How are we all holding up?

Same here Nannafizz, the picc line was taken out at the last infection. My husband is back in hospital for his 4th infection (diagnosed in August so spending half his time there). He hates being in hospital, he is getting weaker and is depressed.   Meanwhile, we hang on and i try to find ‘nice’ things to focus on.

Hi 747, sorry to hear about your husband and hope he’s pulling through. I’m living in fear of my husband going back into hospital but more to the point, so is he.  He can’t face another isolated room or the threat of it.  Consequently he is considering not having any more chemo, oral chemo has been offered with only a 5-10% chance of any improvement but a high risk of readmission to hospital.  His mood is low now and he won’t hear of antidepressants but he has no enthusiasm.  It’s also gone to his bones now and he’s taking simple analgesia so far. 
unfortunately, I can’t find anything nice to focus on because I keep thinking about the end and how it’s going to be for him. And me if I’m honest.

im just praying that we get Christmas Day here together at least.  I hope you’re keeping your head above water and looking after yourself too x 

Hi Wee Me,

I hope your husbands appointment goes well next week and you do get to go through options properly with the oncologist. As I said before my husband tolerated the temozolomide chemo quite well initially.  Its definitely getting much harder for him now though. 

My husband didn't wanted to ask about a prognosis but we were told it was incurable and treatment was palliative, to hold the tumour from progressing and maintain some quality of life. His thinking was that he couldn't do anything to control prognosis and we would just take things a day at a time. We are now 16 months since diagnosis and he's still fighting on. Admittedly its getting harder,  he's so tired most of the time but we're getting on with life as best we can. I know that hes doing better than the oncology team thought he would and we saw the gp last week who told us that he's done well up to now and told me 'you know this is palliative care? ' taken by me to mean things are about to get worse! I know the prognosis is 12-18 months so do know he's doing ok up to now. But we don't discuss time left as what's the point it's only ever best guess. I hope your husband is well enough to be offered the TMZ and that any treatment he does decide to take up helps him with symptoms etc. Everyone is different despite having same diagnosis and treatment, no one really knows how someone will respond. 

The living in limbo is just how it is with this diagnosis. Life is lurching from one scan to another. Getting more panicked as each one gets closer.  My husband definitely does get stressed during the build up to scan and results. So I do understand your anxiety about not knowing if the radiotherapy has been effective. I do hope so. We're awaiting a scan in February as well.

I wish you both much love xx

HI LC 50, thanks for thinking of us. We'll see how Tuesday's appointment goes. He's still of a mind to decline the 6months of oral chemo if it offered as an option. I have to respect whatever decision he reaches. He doesn't even want me to be present at the appointment but as I work from home in the next room I'll not be far away if he needs me.

Physically he's been doing really well. Despite the blood clots in his lungs, he's been back out running. There has been a noticeable cognitive decline in the last 10 days but I guess that's to be expected.

One day at a time. One step at a time.

love n hugs

Wee Me xx

Hi Wee Me, 

I absolutely agree that we have to respect the decisions that our husbands make.  If your husband wants to be able to continue to go out running and feeling relatively well for as long as possible then chemo may not be the way forward for him. As I've said before it's a decision only he can come to. 

It's not easy to live with either path chosen for them or us. 

Sending you a virtual hug x

We are perhaps very lucky in that my wife's cancer is still stable. We really miss having the family Christmas meal this year but Christmas day itself will be fairly normal for us with the 3 of us at home and me cooking the dinner - I can do a mean Christmas dinner - even if I forgot to cook the pigs-in-blankets last year.

Our sons support group arranged a zoom panto and we all sat around and watched that - not quite the same as a trip to the Oxford playhouse but we turned the main light out and gave it all it was worth with booing and hissing and "he's behind you".

Locally we are quite lucky to still be in tier 2 when all around us seems to have gone to tier 3 or even 4. I do find it amazing that people make so much of the idea of basic hygiene as a was of combating the spread of a virus - something my mother taught me when I was about 6.

Keep safe all

<<hugs>>

Steve