Diagnosis

HI Snaffy

a warm welcome to you. I saw you'd posted to the group twice so I'll do my best to answer both here.

Sorry to hear about all you've been through but well done on making it to the final chemo tablets. Hope the treatment hasn't been too harsh.

My husband was diagnosed with a grade 4 brain tumour in Sept 2020 and post-surgery had 6 weeks of oral chemo and radiotherapy. By the end of the 6 weeks he was exhausted but recovered his energy levels over the next few weeks.

I'm sure there are plenty of others in the group who will add their advice here but the first thing I'd suggest is that you write down all your questions so that when it comes time for the appointment, you have your list and can use it as a prompt ( just in case you get a wee bit overwhelmed on the day). Basic things to consider are perhaps when will the next scan be, is there any further treatment needed, will you have regular appointments for a period of time, etc. There's no such thing as a silly question so write them all down.

It’s always good to talk things through so please remember you can call the Macmillan Support Services on 0808 808 00 00 for some guidance here - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available. This service provides lots of cancer information, emotional support, benefit and financial guidance or just a listening ear.

For now, sending you some healing love and light and hugs. Stay positive. Stay strong.

love n hugs

Wee me xx

Hello Wee me. Thanks for providing an excellent response. The follow up assessment will more than likely take place quite soon. 

However I am really more interested in your experience as a carer for your husband if you don't  mind me asking?  I am an independent person and I have found this particular relationship to be quite difficult to manage. Following my diagnosis in April 2021 we had a civil partnership ceremony at the end of May when T moved in.  Since then I have been riding the waves both up and down.

T had experienced several people dying from cancer including her mother and she appears to want to rush me towards a dependent state. Her favourite phrase is "further down the line". She can become terribly depressed and overwhelmed by it all. 

On the other hand I do not want to appear blase about my prognosis and do not want to say anything direct to her. 

Any advice on this subject would be much appreciated.

Hi

glad my reply was of use. 

As for my own experience so far as the "carer" for my husband... that's a tricky one to answer. Being totally open and honest, after 25 years our marriage was suffering a bit from wear and tear shall we say. Add in five months of lockdown due to covid when we were both trying to work from home and we weren't in a great place when he got his diagnosis. (My kids will tell you its a miracle we hadn't killed each other in those 5 months!) He was and is a total control freak. However when he received his diagnosis I promised him that I'd support him through this. His diagnosis was a terminal one from the outset so that made it even harder to deal with. His mother had also died a long time ago from a primary brain tumour so we are both haunted by ghosts of that time. 

In those first couple of months it was hard not to "mother" him. He's fiercely independent. He's also a fitness freak (marathon runner) so he was keen to exercise as soon as he could after surgery. His tumour is in the area of the brain that controls speech, language and understanding so physically, he's still fit. In those early days he couldn't run but he'd disappear for hours on end as he walked for miles and miles. My heart was in my mouth every time he left the house! It still is. I got him a "road ID " band so that at least he had his emergency contact details round his wrist (when he actually remembered to put it on!) Gradually the walks became runs. A bit like a mother letting her kids out to play for the first time, I had to trust that he would remember how to get home and not stray into the road. 

Gradually we both adjusted but it took time. Months! I had to smother the urge to do everything. I've had to learn to be led by what he wants or is able to do. Partly due to his personality and partly due to the tumour, he doesn't see why this affects anyone else's life other than his. If only he realised the impact its having on myself and our two kids (21 and 24) 

Maybe its the coward's way out here but its easier to let him do his own thing and be ready in the background to pick up the pieces if and when it goes wrong. 

For example, he can no longer read so when we are out for a meal or if a form needs filling in at an appointment, he'll now at least let me read it to him. It's the same with messages on his phone at times. It's case of taking each day as it comes.

I can honestly say that I've never felt as useless in my life as I have over the past 16 months. That's hard to cope with at times. You'll notice from my posts on here that I'm a big advocate of self-care and taking time for yourself. It's not being selfish as a carer, its essential to help maintain my own sanity  and wellbeing.

Sorry if this has been a rambling response. I guess what I'm trying to say is talk to each other and set some boundaries and guidelines. Reach agreement that help will be requested when its needed. I've used a phrase a few times with friends that makes them feel uncomfortable but it reflects our personal situation - he's dying but he's not ill.  As he's not ill, I can't and shouldn't treat him as an invalid. That day may well come but till then life is taken a day at a time around here.

Hope that's helped in some way. Between you, you'll work it out. Stay strong. Stay positive.

love n hugs

Wee Me xx

Hi Wee Me,

Sorry about the delay in replying but I had some trouble with my internet. 

My diagnosis is also terminal. Nothing something you can easily avoid with glioblastomas.  My tumour is in the middle of my left frontal lobe but dare I say it, for the moment I'm the same as I ever was. I have an appointment for January the 24th so I will have a much better and possibly final understanding of where I stand. 

I do like the idea of an ID bracelet as something which might soothe T? She is still working for the moment but again this might well change once we are better informed. We have agreed that I would ask for help when it is really needed. 

Wee me, it sounds to me you are doing all you can to cope with the situation.. I like the phrase "dying but not an invalid". It resonates with me. It is good for me to hear other people's experiences and I hope that you and your two sons can get through this. 

Lots of virtual hugs.

Snaffy