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Original poster

I'm not OK

463 replies

Willowkins · 26/03/2017 14:17

My lovely DH was diagnosed with Stage 4 cancer with mets in the liver and lungs last year. After 6 long months of chemo we have the scan and results this coming week. I have been holding it together all this time. The thing is I suddenly realise I am not OK. I know this sounds selfish and this shouldn't be about me but I feel so sad. I was listening to Run by Leona Lewis and I just burst into tears. Also, I've realised that I need everything to be perfect to feel safe but of course it's not perfect so I get really cross. I wanted to punch a man in his car earlier today. This is not OK is it?

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Chasingsquirrels · 21/05/2017 21:29

Good to hear from you, glad you managed a decent break. Have been thinking of you x

SelenaValentina · 21/05/2017 22:20

I did think of you, squirrels as we crossed into Cambridgeshire - both ways. Just sadly that bit too far to have met up like Juan and ... I've forgotten!

Sleep well, I need to be up early to rush round trying to tidy for the nurse in the morning!

SelenaValentina · 22/05/2017 20:00

The Palliative Care nurse duly came to a not very tidy house and was disappointed re the Oramorph non-results - saying that DH probably wasn't having it often enough. I pointed out that it wasn't helping the hip/leg pain at all, he's now lost faith in them and becoming despondent. They've all had a confab, including GP, and DH now on prolonged release morphine, starting tonight. Fingers crossed please for some better results.

Does anyone else ever wonder/be concerned about who might do all this for them if in the same boat (heaven forbid)? And is it worth it?

Bubble, dodgems, roller-coaster journey - but at least the sun came out after a very grey start, all the washing has dried and it feels much warmer Grin

Chasingsquirrels · 22/05/2017 20:54

Hope the change of meds helps serena.
Yes I wonder that. But am not sure what you mean by is it worth it? Right at the end I think John and I both wanted it over, but by that time it was inevitable and there was no enjoyment of life for either of us. Up until that point, I think k it was worth it. Would I chose to live last summer and autumn again? 100% if it meant I could be with him again.

SelenaValentina · 22/05/2017 21:26

Poor question on my part. Should maybe have said 'Would it be worth it for them, given the hassle/time/worry involved?'

And knowing what we know from our own experience, would we necessarily want them to.

Sorry, I'm becoming maudlin Blush. But of course, I want to be with him every minute we have left together - or nearly every minute anyway. Maybe I need Wine, Cake - why is there no MN emoji for ice cream?

Chasingsquirrels · 22/05/2017 21:41

Just sending you a hug and some 🍨

Original poster
Willowkins · 23/05/2017 00:33

Just came to the end of a very busy day and finally caught up with MN. As well as sending virtual icecream 🍦 (vanilla flavour do you?) I think that's a very interesting question. A slightly different question I sometimes ask myself is whether I could go through what my DH is going through and the answer is: he is a braver person than me.

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FuzzyCustard · 23/05/2017 15:19

Hello to all and thank you for the ice cream.

As we wind ourselves up to another hospital appointment tomorrow and I am sick with fear, I do wonder what it is like for my DH, hearing whether he is likely to survive for any length of time or not. Every week. He doesn't always open up to me; I think he is trying to protect me in some way, but both of us know the reality and the implications.

(He's sleeping at the moment, so some peace)

It's hell, isn't it?

Oly5 · 23/05/2017 15:25

Just joining this thread. It is hell. I watched my DM deteriorate to the point we were all - including her - wishing it was over. Something to end the agony. For a long time my mum had a syringe drive which definitely helped with pain relief - 24 hours a day. Is that an option? She was at home

SelenaValentina · 23/05/2017 15:57

Hell is the right word Fuzzy. We have spasmodic conversations, at the moment of the 'I can't go on like this' variety. Sad I also reflect that if this was one of our beloved cats then we would probably be prosecuted for allowing them to suffer. Or more likely, the vet would have something that actually works on pain, if only for a shorter time.

Hello Oly5. I think the syringe drive will be the next stage. I do think he's brighter today but he says the leg pain is as bad.

It's our 34th wedding anniversary and I've bought some (ridiculously expensive) locally picked today (right Hmm) strawberries to celebrate. With a meringue and squirty cream! We know how to live!

Chasingsquirrels · 23/05/2017 15:59

Hi Oly5. My DH also had a syringe driver, but only for the last few days.

FuzzyCustard, I'm hoping for only positive news for your tomorrow x

FuzzyCustard · 23/05/2017 18:26

My DH had a syringe driver while he was in hospital. He said it didn't really help with the pain (but Oramorph had no effect whatsoever) but it did help him sleep.

Thank you squirrels.

Oly5 · 24/05/2017 08:47

My DM had a syringe driver for a good few months at home. It did help but the pain was still there whenever she was moved (for washing etc). Just wanted to flag you can have them at home. I'm so sorry you're going through this

SelenaValentina · 24/05/2017 09:24

Thinking of you today, Fuzzy, fingers and toes tightly crossed.

FuzzyCustard · 25/05/2017 07:13

And breathe....Dh did well at hosp yesterday. Blood counts and donor cells all improved. Not near normal yet, but better. Looks as though the graft may be holding. He's dodged another bone marrow biopsy for another week. I am so grateful.

Hope everyone else is coping.

Chasingsquirrels · 25/05/2017 08:55

That's good FuzzyCustard x

SelenaValentina · 25/05/2017 09:24

Oh that's so good, Fuzzy.

And the prolonged release morphine seems to be actually helping with DH's pain, although given him swollen ankles. Seeing GP late this pm anyway so am refusing to worry about that - yet.

Have a lovely day everyone, the sun is shining here, birds are singing and Barnaby Tortoise is merrily eating her lettuce and tomatoes.

Original poster
Willowkins · 25/05/2017 09:51

Great news Fuzzy and Selena. The sun is shining here as well. It's going to be a glorious day. Also, I had my first counselling session yesterday and feel a lot more positive.

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FuzzyCustard · 25/05/2017 16:28

It's pretty hot here too, but living on a hill within sight of the sea we get a cooling breeze. Thank goodness. Dh had a snooze on the garden bed and had gone for a short walk. This is good.

willowkins glad the counselling helped. How many sessions do you get.

Love to everyone else (including Barnaby Tortoise)

Original poster
Willowkins · 25/05/2017 18:48

I get 4 sessions Fuzzy - 2 face to face and 2 on the telephone.

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SelenaValentina · 25/05/2017 19:54

Barnaby says thank you. DH swollen ankles not a problem, stop tramadol take diuretic.

DH wiped out by trip as so hot and GP explained the liquid morphine scenario much clearer. Very hot, very breathless, something tiring = liq morph. Note how often, they can then adjust the prolonged release morphine long term. Light bulb!!

FuzzyCustard · 25/05/2017 20:02

My DH is tired today too. I do think the heat has a lot to do with it.

Chasingsquirrels · 28/05/2017 00:25

Willowkins, glad the session was helpful and hope the others are too.

Selena, good that the swollen ankles aren't an issue and that the slow release morphine is better.

Hope everyone has managed in the heat and that you are able to take some pleasures from life.

xx

Original poster
Willowkins · 28/05/2017 08:35

Hi squirrels, thanks for thinking of us. Hope you are coping and here is some belated birthday cake 🎂

I've been managing to keep the dark thoughts and worries at bay and taken a long walk. The counsellor has given me some homework to help me take some pleasure in life. I've been too busy to do it of course but I will get round to it.

DH had his MRI (he was in there over an hour) and I think it's so they have a clear picture for the radiotherapy and to see how it's all going.
On the radiotherapy, can anyone tell me what to expect and how best to support my DH?

Hugs all round.

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Original poster
Willowkins · 28/05/2017 08:37

Aw that cake must have got eaten by the MN fairies - here's some more Cake

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