The calm before the storm

[Willowkins]

I previously posted under the title: I'm not OK - about my lovely DH with stage 4 bowel cancer.

We heard a few weeks ago that DH has refractory disease - basically the chemo is not working. We see the oncologist this week for the results of the latest MRI and hopefully a new plan but it's not looking good.

I am sitting here in the sunshine and the birds are singing but I know we have dark days ahead. I'm trying to stay strong for the family.

Just needed to share with you good folks as can't really talk about this in RL.

Like @iwantavuvezela I would also happily write to governments/media your prime minister (she seems lovely!)

Thank you @Willowkins, I am so grateful that you started this thread. Not grateful for the reason, but that you reached out and in so doin made it possible for others too. This thread has been a constant source of comfort.

@iwantavuvezela, @chinchin77, @notapizzaeater, yes. Yes to all ideas, all offers of help and support. As soon as we have DHS scan results next week, I am going to turn all my efforts to getting HD the meds he needs. I’m just in that horrible waiting place as we don’t know if the meds are still working yet. If they are, then I will begin my campaign.

Thank you all so much for being outraged for us. It helps.

@Frikonastick have you checked to see if the drug company has a compassionate fund That May help you ?

@Frikonastick could we crowd fund?

Good news, dh brain scan is clear phew. His gp finally got hold of the oncologist pa and demanded to know, she has also requested his scan to be done as urgent. Gp has also put in a complaint in about how dh has been treated and the lack of communication and regardless of the pandemic is absolutely classed as a priority.

She told dh to stay on the steroids as they are making him feel so good.

@loubieloo4 that’s a relief for you and your DH

@Frikonastick we’re here ready to help when needed

@loubieloo4 brilliant news. Just be careful on the steroids long term they cause muscle weakness - only in the large muscles so getting up out of a chair might start getting difficult and he might loose strength in his arms. DH loves being on them but after a few weeks his legs start getting weak - it's a known side effect.

How's everyone's week been?

The radiotherapy DH had on Monday to his ribs has helped ease the pain, thank god. He's still very tired. Sleeping 12 hours at night and then having an afternoon nap.

Our GP gave him a sick note for 3 months but he works from home and they are really really good, if he needs a nap he just goes to bed. DH was horrified - he wants to work ! I spoke to his boss on Thursday and proceeded to blub and snot down the phone to him. Quick call to GP and they've amended it to 2 weeks. He would get full pay for 2 years and work have told him all along to bugger off and enjoy but he really does love his job.

Great news @loubieloo4!

I second @frikonastick's thank you to @willowkins perfectly said and I too find this thread a huge support and comfort.

@notapizzaeater am pleased DH comfortable and my DH much the same with work - although this week he is so very tired is now hardly leaving bed - had gastrostomy feeding tube inserted into stomach on Tuesday, which required a GA, recovery from that is intensified, but I am so very worried about the tiredness. I just know things aren't going to get better and I'm scared.

Woke up this morning with a high temp, cough, headache etc lots of the dreaded coronavirus symptoms, I have sent off for the test which should be here tomorrow. I then have to book for a courier to come and collect, the results take 48hrs.

Fingers crossed it's not corona I haven't been anywhere in the last 2 weeks apart from a walk outside. So now I am banished into the living room, we have a toilet downstairs so I'm using that one. I do feel awful and have slept on and off all day.

It's the last thing we need right now, I have asthma and an auto immune issue and then the real worry of dh getting it too 😢 life just never seems to want to give us a break. Hopefully the test will come back negative and it's just a summer cold 🤞🏻

I hope everyone else is doing a bit better.

@chinchin77 hugs for you 💐the tiredness will hopefully wear off after his ga.

@notapizzaeater I'm so pleased dh seems to have better control of his pain.

This group is amazing, I want to thank you all for giving me a place to say my worries out loud and feel the love and strength you send through the screen 😘

@loubieloo4 - eek, last thing you need on top of everything else. It’s one of my biggest fears Is anyone in the family getting it.

DH has become more confused over the day and had a killer headache - it’s all a bloody worry - so I’ve upped his steroids (his doctor told me to and just let them know)

@notapizzaeater I know, I'm trying not to worry as I'm sat here wheezing, easier said than done. Just checked my temp and it's still up at 38.1 not due any paracetamol just yet.

Hopefully the upped dose of the steroids will help, my dh absolutely loves them!

@loubieloo4 how are you today ?

Still not quite myself, still a bit wheezy but ok 👍🏻 it's probably just a bit of a cold and mental exhaustion. Hopefully when I do my test it will be negative and I won't have to worry about dh. Thank you 😊

Long story, DH in hospital and it's 'weeks' now. 😢

Oh @chinchin77 sweetheart I have no words, I hope you have lots of support around you. 💔

Chinchin I'm just so, so sorry. Take a breath. You are already doing everything you possibly can to care for your DH. Take care of yourself too xx

@chinchin77 so so sorry for you ((hugs)) xx

Oh @chinchin77 - sending you much love and strength

I am so sorry @chinchin77, this monumental thing that is happening to you and yours. If only we could in some measure carry some of it for you. All the love and light my fellow traveller, always.

@chinchin77: I'm so very sorry. I wish you all the strength you need to get through this.

I haven't been back to the thread for a while, just bedding down for a bit with DH's terminal diagnosis of central nervous system lymphoma. Things have been up and down in the all the ways that I'm sure many of you are familiar with. DH has got a reasonable balance between steroids and sleeping pills at the moment, which allows him to sleep OK but not be too tired and groggy in the day. However, he is becoming gradually weaker and there have been more episodes of the worst sort of confusion (for all of us), which is when he is convinced something is true when it isn't, and he argues about it, constantly changing the terms of the argument, and seemingly sure we (DS and I) are lying to him. It is very distressing for everyone involved, and also exhausting, since it is usually about his demanding we find physical objects which don't exist.

So as not to go on at length, these, briefly, are the things I am trying to cope with at the moment:

1. managing these changes and DH's increasingly irrational behaviour
2. working full time in online mode (I'm a university professor)
3. dealing with the fact that said university is in dire financial states and threatening job cuts and trying to force us all to take swingeing salary cuts. Being required to come up with elaborate five year plans for research and bidding for grants at the same time as this uncertainty (and when thinking that far ahead is actively painful given that I know DH will not be there and my whole life will be different).
4. worrying about DS (20)'s mental health and whether he can cope with what is happening with his father and what the future holds.
5. encouraging / supporting DS to keep going with his uni work
6. doing all cooking, cleaning, planning, financial stuff, coping with endless failures of household items - fridges, loo seats, cooker, boiler - while we shield in order to protect DH (before last week when we started having short walks I had not left house or garden since 13 March when I picked DS up from uni).
7. coping with the after-effects of what seems very likely to have been covid 19, which started on 11 March if not earlier, lasted at least 40 days and still recurs - breathlessness and exhaustion - when I am stressed, which is increasingly often.
8. trying to decide whether to give up on the online counselling offered through the hospice, which so far (three weeks in) has made me feel worse rather than better, and in which the main input of the counsellor is to say how 'fascinating' she finds my fears.

There's more, but these are the main things at the moment. Not sure why I'm adding them all to the thread, but it does help a bit to write them down. Any advice on how you any of you have managed stress would be really useful - I seem to be well into the 'anger' stage of grief at the moment.

Let me take care of this for you.

New thread: www.mumsnet.com/Talk/life_limiting_illness/3942076-Still-the-storm?watched=1
I'll understand and really don't mind if you prefer to start your own.

Much love xx

@Willowkins thank you for serving up a new thread

@SchrodingersKitty - that sounds really tough - I am also struggling with the full weight of work (also on HE) and doing all family, admin and everything else. DH and I are seeing counsellor together - I’m doing it as thinking that here might be a point when we really need her so keeping ourselves in the system!

My coping strategy is to get up 30 minutes before anyone, have a coffee and enjoy the silence of the house - then at night I spend 2-3 hours on my own when everyone has gone to bed, literally distressing.

I never feel alone or without doing something, so taking these two times at the start and end of day helps balance me.

@chinchin77 you are in my thoughts

@Frikonastick you too - your wording of fellow traveller touched me

@loubieloo4 and @hello to you both