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.

We're in a state of complete chaos. DH is home and learning to walk on his broken leg. He is having to sleep in the sitting room and use the loos next door. Last night all of the constipation from hospital resolved itself and he has completely blocked the toilet. I've spent half the day trying to unblock it in between running around with meals, helping him practice climbing stairs, and trying to chase up hospital stuff.

The hospital stuff has got really complicated - they have been unable to diagnose his brain lesions for 8 months but have thought they were probably secondary lymphoma. They kept going away and reappearing. The MRI and lumbar puncture done last week seem not to clarified anything (though we are not sure because the consultants keep saying they will call and then not doing). We have now heard that they have referred him the neurology and also consulted with various London centres. We were rung by neurology and told he needs to be seen in person for the first meeting - despite the fact that he is shielding as high risk. So that's booked for tomorrow. We need hospital transport and they probably won't let me go with him. (It might be sensible as I have been very ill with a virus that may or may not be covid, but it would put me at high risk if it wasn't). I'll have to join the consultation on speaker phone. Then haematology phoned and wanted him to go in tomorrow to speak to their consultant (this is at a different hospital, half an hour in the other direction). As far as I can tell, this is basically so they can tell us all the things they don't know. We have been waiting nearly two weeks to be called back by them, with messages every few days to say they will and then silence. they seem to have no idea what torture it is waiting to hear something. And they also seem to think that waiting hours in a waiting room to see them in person magically makes the bad news better - IT DOESNT! We just want to know whatever they no NOW. I am really losing it.

kitty no words just a big hug across the ether. That sounds like a complete bloody mare. etc.

I posted the above as it was the situation when I broke off writing the post a few hours ago. Since then, we have been phoned by the haematology consultant. She explained that she has referred to neurology to rule out any chance of a rare neurological condition, but in the absence of that they do think it is secondary lymphoma in the central nervous system and they don't have much hope of being able to treat it. They could do chemo, but he has already had the best drug when he had lymphoma two years ago and it did not stop it developing in the brain. The chemo would be very aggressive and would probably only give him a few more weeks or months. The other option is palliative care, including probably increased steroids, at home. The steroids shrank the lesion completely when it first appeared 8 months ago, so there is some hope that they might do so again, but we are having to face the fact that it is almost certainly terminal.

We talked it through with DS (20), who has been in denial, but was very good in facing it and very supportive.

I am now going with him to the neurology appointment as haem consultant thought it was important in case he gets confused. Someone will meet us at the entrance with face masks.

We are oddly a bit calmer now, as at least we know what we are - probably - dealing with, and are able to focus on making the time he has left as good as possible. But it is really really hard - as I know you all know. I could really do with someone who is able to talk it over with me a bit if anyone is there now.

Oh you darling girl. What a horrible thing for you all to have to get your heads round. You must be so shocked and scared behind the relief that at least you've got some info. I'll be up for a bit, I can chat? cant promise any useful info or anyting, but will be around for a handhold if that helps. xx

@yoloPenguinsEatfish: a bit of a chat would be helpful if you are still about. You are right about the fear bubbling just underneath. And also some really noxious hope - that the steroids might work again, that we might have more time, that it still might not be lymphoma. Noxious because then we have to live through the moment of accepting the worst once again.

I do actually have to go to bed soon, but will be up early so can chat in the morning, if that helps.

The fear and the hope is a horrible combination.

We are lucky, DH is now cancer free after stage 3 bowel cancer. But life is irretrievably changed, he had a colostomy for life after removal of his rectum (TMI?) and he is a completely different person. Bag explosions happen most weeks, he is much more anxious. and embarassed about the shit that happens.

I'm completely fatalistic, I spent a lot of mental time planning his funeral and what would happen to me and the DDs... it's like running it through in your head is a kind of rehearsal.

I hope you can get some sleep tonight, and will be here in the morning.

@yoloPenguinsEatfish: that's fine if you need to go to bed.

I saw your great news about your DH earlier on the thread - I'm so glad for you all.

Yes, DH and I have both been pretty fatalistic about this all along since the brain lesion was discovered 8 months ago. It was only a month after he finally got the all-clear from the original lymphoma, so we have been so up and down with this. In fact, when he was first diagnosed with the original lymphoma in Feb 2017 they initially thought it was mesothelioma, so the discovery that it was a treatable form of lymphoma instead meant that we were fairly giddy with relief.

I'm trying to think positively that they have given him at least three more years of life - and really important ones for our family: it allowed him to meet his grand-daughter; it allowed DS to do brilliantly in his A levels, have his gap year and his first year at Oxford. The negative would be resentment at how slow they were to get DH in for diagnosis and treatment in the first place - particularly our GPs - which may well have allowed it to get as far as the brain. Its been such a battle but I don't want us to be eaten up with resentments and bitterness now.

Aww kitty it's a real rollercoaster. Ours was missed totally by the nhs, I've a wonderful 29 page report explaining human error from our hospital and apologising - that won't keep me warm at night !

@SchrodingersKitty I totally get the calm feeling, no matter what the news is, compared to the exhausting horror of waiting for information.

It’s unutterably shit. All of it. I’m so glad they are letting you go with your DH.

@Frikonastick: in the end I didn't go with him - we got too worried about the virus threat (I am high risk and have already been ill for about a month with something which may or may not be the virus, but which makes me at greater risk if it wasn't). I feel terribly guilty, but the worry about becoming ill and not being able to look after DH, or - worst case - leaving our son without two parents - was too great. I will join the consultation over speaker phone. I felt very bad waving him off in hospital transport, though. I spoke at length to people in the clinic about the need to help him if he needs it with his crutches and to make sure they would give him a mask. They've been very good about supporting him.

While waiting for the consultation we've been having endless hassles about a prescription for steroids that was supposed to have been sent from one hospital to the other but couldn't be tracked down. He has to have them or he risks a bad reaction if he just stops them, and he took his last today. I've had to leave answerphone messages for everyone I could in both hospitals - it seems to be impossible for them to deal with this directly with each other. The people in the clinic are trying to get them picked up from pharmacy so he doesn't have to make his way there himself, so that's good if they do finally turn up.

I have had moments of outright panic today and had to consciously control my breathing. It's all so scary - the process of dying, the having to manage nursing him at home, particularly with the fall risk, unknown neurological symptoms, broken leg, and his huge fear of losing his mental capacity. Then there's the very different fear of him being dead and how we'll cope with that emotionally. And all the practicalities of death which will be so much more difficult now. We've already been through this this year, when DH's sister died in January. He did most of the support, and sat with her in hospital for two weeks as she died. He says that the experience made him much less scared about going through it himself - he was able to see it more as a natural process. Of course, I'm now also worried that we may not be able to be with him if he has to go into a hospice.

The sensible thing is probably just to try and deal with these things one day at a time and not anticipate too much. But I just feel so alone with it.

@SchrodingersKitty I'm here if you want to talk ?

We've just found out that if it had been found the 7 months earlier when they screwed up DH would have had an extra 18 months 😭😤🤯🤯🤯

@SchrodingersKitty Sensible things don’t somehow feel any less terrifying, overwhelming or devastating do they. Sending you the strength to endure xxx

Thank you all so much. I would really find it useful if any of you can share experiences of how you've coped with acceptance and with the gruelling practicalities. Are there support groups for talking about dealing with death that you've found helpful, or are you tending to focus more on the still-alive-now aspect?

Really anything that you've found has got you through.

Our GP phoned and was helpful, but couldn't tell me much more than we already knew. We're rather hoping there will be no more news from consultants today to give us a chance to absorb things.

We're starting to go through financial documents, wills, etc. to make sure everything is as sorted as it can be while he is still able to deal with such things.

Our local hospice do therapy - we'd just gone down the week before lockdown to talk to them 😥 obviously everything is now shut ....

I don't know about getting head around it, one min I'm up and then crashing down

DH business partner has a brain tumour after a missed melanoma metastised (I seriously cannot spell or say that word) and the local hopsice were brilliant with offering immediate and ongoing support. Again, obvs all closed down for the moment, but there is good info on the CRUK and MacMillan websites, plus forums. And obviously the sites linked to his specific cancer. DH finds the FB page on colostomies very helpful

Friend's DH mentioned previously starts chemo next week, and her mother died on Easter Monday. Honestly, sometimes you just cant make life shit up...

Love to all.

DH got the dreaded govt letter today about self-isolation. Thing is, the four of us have all been here for 5 weeks, living normally but within the guidelines for outside of the house. He finished precautionary chemo some 10 weeks ago, DD1 thinks she had covid before she came home from France (seems likely as she was quite ill and four of her colleagues tested positive on return home to other countries).

He's currently cooking, I really cannot see him buggering off to his bedroom for 12 weeks at this stage of events...

How is everyone doing?

Slowly going stir crazy as we're also shielding so not leaving the house unless absolutely essential - whilst weather been good it's been ok, I dread it when it turns cold.

My 94 yr old nan is in a home and is showing all signs of it, they are keeping her there and keeping fingers crossed.

nota everything xd your nan is ok.

DH just had a disastrous bag explosion, I feel for him so much.

Hi all - I feel come to ask if any of you have advice for me - my husband seems to be ticking off all the side effects for immunotherapy- - but the most worrying is his feeling of nausea and his little he eats. When I do, with much coaxing get him to eat 3 small meals he day he often vomits. I am so concerned at the weight he is losing (he was always a slim man to begin with and has lost almost a stone) , I have contacted our specialist nurse to see if there are different anti nausea tablets he could take, but if anyone had any real life experience advice I could really do with that.
I have tried complan and other meal replacement drinks but he hates the “unnatural” flavours of them

I hope everyone is having an okay weekend and managing the best you can -

We've the opposite - hubby is hardly eating but getting bloated.

Would he drink a normal smoothie with some oats in or peanut butter ?

Sounds like loads of you are having tough times - hugs.
Been crazy busy here - really mad busy with work - and juggling looking after everyone - it never seems to stop. DP has had 'the letter' - but the irony is that he is the one who is actually out and about more than the rest of us... off to hospital every other week for chemo. Otherwise, we are all fairly locked down - which seemed preferable to the him shutting himself in a room for 12 weeks (or as he put it... well - I'll have the bedroon, the ensuite and the living room...) - but then I get really angry that I find him out in the garden, polishing the car and chatting to neighbours - and apparently that's fine, whereas if I were to do that, there would be a lot of passive agressive retribution.
Tough times - and I can't really see an end to it.
I do get very cross though when I see people ignoring all the messages about social distancing!

How's everyone doing? Dh got the 'letter of doom' but as we were 5 weeks into being as socially distant as we could by the time it arrived he has decided to ignore it.

I really dont understand how anyone can be expected to shut themselves into a room for 12 weeks, it's just not feasible.

Much love and to all.

yolo - totally agree - the shutting himself in a room thing just wouldn't work.
The rest of us isolating too seems to work OK - so long as we manage to get food deliveries etc. Not sure quite what happens if lockdown starts to lift, and smaller child has to go back to school (in fact, not sure what she will do either, having dyed her hair bright pink, and being quite well adjusted to going to virtual school in her dressing gown!) - but I guess we cross that bridge when we come to it.
I do get a bit cross with all these people on the news demanding that the lockdown be lifted - or just flouting it. FFS - it's not that difficult - and better than catching covid, or passing it to vulnerable people!

Hope all of you & your families are doing OK

veryoldgrumpywoman loved the description of your DD - I’m the same trying not to think about when lockdown eases with a school aged child and the challenges that will bring.
DH is in hospital tonight, very poorly this week - after many emails, phone calls and pleading they agreed to a face to face assessment for his severe headaches and nausea also meant not he is hardly eating and losing weight rapidly. so they are running tests, he has increased liver function (probably immunotherapy related ) swelling around one of his lesions ( perhaps radiotherapy related) - they mentioned one of his lesions had grown (could be due to radiotherapy) - it’s been a long time since we had a glimmer of light - but we visited him at hospital and just with the first steroid IV dose he seemed more able and alert.
This is so very hard.
Big hello and hugs to all

@iwantavuvezela hope DH continue to improve.

We've phoned our oncologist this morning, the drugs we ideally want DH on but nhs won't allow are suddenly available due to Covid as an alternative to chemo ...... I've sent all the links over to her and hoping we can get them - they add about 6 months to life expectancy so the nhs deem them not worth the cost vs the standard drugs. We could get them privately but can't find a private oncologist who will take anyone on