Still the storm

[Willowkins]

Continuing the support thread - mostly for the partners of people living with terminal cancer - www.mumsnet.com/Talk/life_limiting_illness/3266385-The-calm-before-the-storm?pg=10

This year is just the year that keeps on giving, my nan (expected and tbh she's been ready to go for years) died today 😢

I’m so sorry @notapizzaeater, expected or not, doesn’t make the loss any less. You have my most sincere sympathies xxx

Sending you a hug and a handhold notapizzaeater

Oh hugs notapizzaeater!

A lurker here, notapizzaeater

How is everyone going?

And does anyone have any entertainment suggestions? DH is really struggling with boredom, but his fatigue and limited concentration make doing interesting things difficult.

Hi Spoon. We're okay thanks. I'm buying a new car (which feels really weird doing that on my own).
I don't really have any suggestions. We did the crossword together from time to time (I'd read out the clues and he'd help). Other than that he watched a lot of TV.

We did jigsaw (by that I mean me 99% and him 1%) and watched lots and lots of box sets some episodes more than once as he fell asleep

@Willowkins snap, my car goes back in feb so starting to look now - very scary !

We did jigsaws and listened to the radio while DH was still up to it. When he became bed-ridden we took turns reading aloud the books DS was doing for uni that term (all online as this was during the first lock-down). DH listened to audio books when he found reading physically too hard. Then he started losing his place and finding it too hard to work the kindle app on his iphone. For the last few weeks he was at home he mainly listened to classical music - mostly Bach and Purcell.

His interests strangely got more and more highbrow in the last few months. He didn't want to watch tv any more but would still watch the filmed versions of plays that the big theatres put on during lockdown. He found it harder to concentrate on external things and retreated more into his head. He was having a lot of hallucinations (the cancer was in his brain) and not sleeping much at all because of the steroids. Luckily (as a novelist) he was very interested in the weird things happening in his mind, so he found it more entertaining than distressing.

@Willowkins and @notapizzaeater, we have just ordered me a new car as mine is due for replacement and I didn’t want to chose one on my own. So glad it wasn’t just me who found that a difficult proposition! Unfortunately it’s a year wait for delivery so DH is very unlikely to be here for it.

@Spoon27, my DH isn’t watching any tv or box sets, but is still reading and plays a lot of video games! Which he never did before and my 13 year old DD is loving it. They are going together tomorrow to pick up a new PlayStation 5? I think it is? I’m very very non computer gamer.

Some of the games are definitely not age appropriate for DD I think, but I’m leaving them to it as she is loving having something to connect with him over, and I love hearing them laugh so much I just don’t care.

We are ticking along, everything has slowed down a lot. I’m feeling at turns much more peaceful, but also much more afraid as it all progresses

Thank you all! I think the main problem is the massive divide between what DH remembers being able to do and thinks would be interesting versus what he can actually do now, that and his very short periods of availability. So he's bored, but can't do enough to fix it. We've tried jigsaws but he couldn't lean down over the table enough to do much, he watches tv sometimes but he falls in and out of sleep and can't take it for more than 20-30 minutes. We've found some good online games that are turn based so every now and again he has a turn in a game with friends/family but it only takes a couple of minutes so it doesn't exhaust him. And listening to music has been good. It's also good when I sit with him and chat as much or as little as he is able/wanting to do. But unfortunately I can't sit with him while he doses and chats as much as we would all like. I've been thinking of asking if other family would be happy to sit on the other end of a phone call like that, but there's often an expectation against very long pauses with phone calls.
I can definitely recognise an increasingly high-brow trend to DH's taste :-), so it's interesting to hear your DH had that too Schrodingerskitty. And frik, that video game time together sounds priceless!!!
I guess we'll just keep going and see what we can do. It changes so much day to day as well and lately he's been getting more sleepy and having more trouble separating reality and dream/hallucination again so we'll see. Today he spent a while talking about my brother (I'm an only child) and often needs to know "how many across we are".

Hugs to you all with the new car purchases. Amusingly/bizarrely our old car broke down in May and we bought a replacement and fairly randomly at the time decided to register it in my name rather than DHs. Very glad we did that now. Also sad that DH has only been able to drive the car once and he put so much thought into choosing it.

Take care Frik. The alternating peace and fear sounds very recognisable and reasonable. I hope you can take solace in the peaceful times and enjoy those times of laughter.

We're plodding along slowly too. DH hasn't been healing well from the surgery so they haven't been able to restart chemo and he's getting worse and worse. But there's hope that he'll be healed enough for chemo again in another couple of weeks. We just need to get through to November.

On a nice note, yesterday was DS2's 7th birthday :) and we made it with DH to the park to eat cake!

Happy birthday to your DS @Spoon27, any day with cake is a win 😁

Thanks frik!
Today is scan day for DH.
He has real anxiety around the scans, made especially worse as his swelling means he can't breathe and lie down at the moment and for the scan he has to lie down in a claustrophobic tube. He also can't ingest much at the moment so is very concerned about drinking the contrast fluid.
Last scan was the first since chemo started. Great to see the positive impact of the chemo. But it also sent him to emergency surgery which he barely survived.
He hasn't been well enough to restart chemo since and his symptoms have been getting worse. So now we'll get to see what the tumours do with 2 months of no chemo... Nothing good I expect.
We'll probably find out results next week.

I hope everyone is travelling ok.

Hope it goes/went (not sure with the time difference) okay today Spoon

@Spoon27 hope today has gone as well as can be. DH needed to have a **ixipam sort of tablet to relax him enough to lay flat and he felt like he was drowning when he laid flat.

Next scan for us in end of November, this one feels like it’s too far away this time, I just want to know what is happening inside him. Hope your DH results are as good as they can be @Spoon27 as we say here in NZ Kia kaha xxx

Thanks willowkins, notapizzaeater and frikonastick! The scan actually went really well. Meds helped and he was calm and they were able to help prop him up so he wasn't lying flat so he could breathe and they didn't need to redo it or pause part way through or anything. Results on the 26th I think.
Good luck with the wait Frik, end of November does feel far away.

Well we got the scan results early. It's really not good news when the doctors cry (but I appreciated their humanity and empathy).
Disease has progressed. He's back in the hospital and in a pretty bad way. The doctor asked and we agreed on do not resuscitate orders. Docs are worried, but haven't completely ruled out the possibility of him coming home again before he dies. There is also still some chance he'll improve enough to try one of the other chemotherapies and buy us all a bit more time.

@Spoon27 never a good meeting 😭😩

I'm here holding your virtual hand x

I'm really sorry @Spoon27. It's so hard, even if you are expecting / dreading it. Wishing you all the strength to get through this, and hoping for moments of calm and peace together.

I’m so sorry @Spoon27, that’s so hard xxx