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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?

OP posts:
SelenaValentina · 04/04/2017 20:23

Five and Willow - I'd begun to think I'd frightened everyone off with my rants. So pleased you are having a break Willow - I'd have done the same had DH's walking not been so bad. The person who phoned him yesterday said there was an appointment in early May but we've not got it yet. Presuming another scan in the pipeline, although Oncologist not had the written report of the last one yet, 6 weeks down the line.

But it's been a lovely, sunny day, which is cheering in itself. And he's still here, even more cheering.

FiveGoMadInDorset · 04/04/2017 20:36

And well done for you are not OK, that has been the hardest for me x

FiveGoMadInDorset · 04/04/2017 20:36

You are not on yr own Selena

SelenaValentina · 04/04/2017 21:01

DH has physio tomorrow so I will walk on the prom, scream abuse etc at recalcitrant seagulls and talk/plead/argue with the Universe whilst I'm at it. Therapy at its best.

Hope we all get a good night's sleep.

Chasingsquirrels · 04/04/2017 21:31

Just sending some hugs to all three of you.
xxx

SelenaValentina · 05/04/2017 19:59

Not much of a walk on the prom, the wind was freezing so enjoyed coffee (always my support when stressed). Think even the seagulls fed up.

Physio was helpful though, and DH is finding it easier with the suggested 2 sticks, rather than one.

Hope all well (as it can be) with everyone?

Chasingsquirrels · 05/04/2017 20:28

Glad the physio helped and he is finding 2 sticks easier.

Willowkins hope things are okay with you as well.

xx

Original poster
Willowkins · 05/04/2017 22:58

Hi quick update. I had my calming spa treatments today and fell asleep so I'd say that worked! DH is in a bit of pain from where he fell yesterday but mainly he's struggling emotionally. I am trying to be what he needs. Hugs to you all.

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FiveGoMadInDorset · 06/04/2017 19:48

Calming treatments sounds great, DH is in a bit if a high tonight, his MRI scan results came back and show that the tumours are still shrinking in the liver so still on course fingers crossed to try and remove the tumours in the liver in Maty and then the bowel tumour in June or July.

Original poster
Willowkins · 06/04/2017 22:05

Such great news and just a few weeks until the first op. Fingers crossed.

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Chasingsquirrels · 06/04/2017 22:40

That's fantastic FiveGoMadInDorset, much love to you all.

SelenaValentina · 06/04/2017 22:51

Hi All, just posted on Juan's thread - as I said on that, I get mixed up which thread I'm on! More coffee needed perhaps.

Willow - my DH fell this morning, shaken but thankfully I don't think too badly stirred. As he was seeing his private physio today, I tried (to appear) not to worry but she thought all ok-ish. On the NHS physio's advice yesterday we got one of those sit-in-the-chair and pedal things today and we're hoping that builds up muscle.

Oh, but I'm envious of the spa treatments. And so great for your DH Five!

Original poster
Willowkins · 10/04/2017 16:12

So we're home from the holiday (4th load of washing on) and we mostly had a great time. Complete meltdown by DH on way home because didn't like the way I was driving Hmm but we got through that. A msg on answerphone from MacMillan nurse but of course we can't get through to find out what it's about. Appt sent in post for full body PET-CT scan this week. Consult also this week. I can feel the stress building even though we had good news last time. Breathe...

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Chasingsquirrels · 10/04/2017 20:36

Glad you had a good holiday Willowkins, hope the news is good when you get through to them.

SelenaValentina · 10/04/2017 23:03

So glad you had a mostly great time, it's awful coming back to the real world so quickly though, happened to us last year - kerpow.

Ha ha re the driving. DH normally drives everywhere but he didn't feel too bright the other day so I took the wheel. He was constantly trying to tell me about potholes and flicking his hand to tell me to keep over. I reminded/yelled at him there were cars on the other side of the road I would prefer not to drive into.

DS said DH sounded like Hyacinth Bucket. New nickname is born!

Original poster
Willowkins · 10/04/2017 23:48

That's it exactly - and DH is always referring to his DM as HB so that would make him stop and think. On this occasion, he didn't want the music on and he didn't want me overtaking. I think it's a needing-to-be-in-control thing which I completely understand as I feel that way too. We didn't get through to MacMillan nurses yet. I did read the information leaflet about the PET-CT scan and he will be radioactive for 8 hours! We had a laugh about it and told DC1 not to hug him unless he wants to be RadioactiveboyGrin. I'll post when we hear more.

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SelenaValentina · 11/04/2017 14:54

Macabre humour is wonderful, isn't it? DC1 could be the Incredible Hulk!

As we still haven't heard from Occ Therapists for an assessment, I ordered an ultra light self-propelled wheelchair from Amazon and it arrived today. I can lift it easily, hurray, and we're going to keep it in the car 'just in case'. A kind friend had lent us a push-only one and no way I can lift it or even push it easily.

Any more moaning, sorry, 'commenting' on my driving, I've told him he'll be dumped on the side of the road with wheelchair for company.

Chasingsquirrels · 11/04/2017 15:07

I think I told DH if he annoyed me I would leave him somewhere in the wheelchair - as it was the wheelchair was delivered on the Monday as he was obviously dying (having been ordered the previous Monday by the GP following her home visit, so it didn't take long), we told the delivery guy to take it away.

SelenaValentina · 11/04/2017 17:15

Squirrels Flowers for the memories, we're on the same wavelength too!

We've just had a trial walk/push, I can see I'm going to be fit if I have to push a lot. Got it in the back of the car too, after a bit of fiddling (or DH engineer-brain calculation).

Another part of the journey.

Original poster
Willowkins · 13/04/2017 12:04

Just while I'm waiting for DH to come back from his scan... We still have to wait for the liver surgeon to decide whether to operate but for the first time yesterday, the consultant said the S word: Survive.Star

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SelenaValentina · 13/04/2017 13:00

Oh wow, Willowkins. Oh wow.

Original poster
Willowkins · 13/04/2017 13:06

I know - right from the beginning we had the I word: Inoperable and they could only offer palliative care. So this means they think there is a chance. But. They couldn't do the scan this morning because his sugar levels were too high and now he is stomping around the house really frustrated. Taking one step back...

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Chasingsquirrels · 13/04/2017 13:38

I truly hope things go well for your DH Willowkins

Original poster
Willowkins · 13/04/2017 14:25

Thanks squirrels - at least he's not radioactive.

I am now off out to an actual gin distillery with my DSis for her birthday. This seems both needed and appropriate Gin in the circumstances.

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SelenaValentina · 13/04/2017 21:53

Ooooh, how was the gin Willow? Absolutely appropriate.

We thought DH had another scan before seeing Oncologist in May, but apparently they wait 6 weeks after radiotherapy 'for things to settle'. So I've booked 3 nights in West Yorkshire, close to where we were both born, in two weeks. Spa, pool Cake Wine Brew. Hopefully he might be recovering from the RT by then, it takes a month at least, and so be a bit more mobile.

Live for the day Smile