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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 · 09/08/2017 15:44

Oh Willow, so good you're feeling OK and that the Oncologist news OK too.

Best of luck - my coping strategy (apart from attempting to clear a house and garage full of junk in 4 weeks!) is re-reading very old favourites - the golden age of crime, as they call it. Amazingly relevant (30's/40's) to what's going on today, especially in regard to the drug scene.

Flowers to all.

Original poster
Willowkins · 09/08/2017 21:32

Hi Selena a little indulgence is good for you. What are you reading? I used to love Mickey Spillane's Mike Hammer which I think must be of that era. Georgette Heyer's detective novels are also quite good.

OP posts:
SelenaValentina · 09/08/2017 22:26

Willow - G H is the one, D Sayers too and I'm going to dig out Ngaio Marsh. I never quite got into Spillane, so one to try later, thank you.

FuzzyCustard · 10/08/2017 16:43

As you were...the doctor who gave DH his results got the wrong. The extra donor cells have done nothing at all, so DH is still at much risk of disease relapse. How can you read such an important thing wrong, for goodness' sakes? Grrrr.

SelenaValentina · 10/08/2017 20:09

Oh Fuzzy. We had months of them saying DH's hip pain was op damage. It was reported on a CT scan as 'extremely likely to be bone mets' - but no-one read it/recognised it until we questioned the agony he was in.

The NHS is wonderful, but .......

Flowers
FuzzyCustard · 10/08/2017 20:19

I'm so tired....

SelenaValentina · 10/08/2017 20:36

Look after yourself properly. Go and scream at seagulls/paddle in the sea/hammer a punch bag - whatever lets you vent your frustration, fear, anger.

None of this is fair. None of it. But please look after yourself.

Original poster
Willowkins · 11/08/2017 00:53

This is so cruel Fuzzy - it's almost worse to have got the good news first because then you begin to hope and feel safe but it's just smoke in the wind.

They are saying that DH's liver mets have shrunk but how can that be when he hasn't had treatment on the liver for 5 months? So that's probably wrong as well.

Sending you a handhold and a goodnight's sleep.

OP posts:
FuzzyCustard · 11/08/2017 11:44

Bless you for thinking of me when you have so much going of in your lives. Very much appreciated.

I have my fingers crossed that the MrWillow's liver mets are slow to respond and have just realised they have had chemo and had better bugger off.

And that you, Selena are coping as well as you can under the horrible circumstances.

FuzzyCustard · 29/08/2017 19:21

It's now two and a half weeks since I last posted here. I appear to have killed the thread. It's a shame that people who really need support get less help and traffic than those posting about their holidays (for example).
Sad Fuzzy :(

Chasingsquirrels · 29/08/2017 19:26

Hugs Fuzzy.
The thread has dropped off my list and at times its been hard coming back to it, I've been pretty low - plus John's outcome wasn't positive and sometimes I think you don't need that.
If you want to chat PM me.

Buttercupambition · 29/08/2017 19:27

Sorry Fuzzy. Afraid I don't have any personal experience but I'll bump so it hopefully gets it on the Active board. Flowers Look after yourself

FiveGoMadInDorset · 29/08/2017 19:47

Hey Fuzzy, sorry to hear this, and fingers crossed

DH has his bowel op tomorrow they gave him more chemo at the beginning of August but he didn't react well to it.

We managed a night away in Devon with children which was lovely.

Can i recommend Phillip Kerr's Bernie Gunter novels as a bit of Berlin Noir, they are very good

FuzzyCustard · 29/08/2017 19:47

Thank you. We are both still alive, so that's something.
I was really sad when my dad died, but that seemed (generationally) the right order of things. Dealing with a sick husband feels infinitely worse and there is no one to really share it with.

Chasingsquirrels · 29/08/2017 20:12

FiveGoMadInDorset I hope the op goes well tomorrow.

Fuzzy can you look into support groups in your area? Macmillian or Maggie"s Wallace might be able to help?

FuzzyCustard · 29/08/2017 20:21

I use the MacM boards quite a bit (and am on the list for some counselling) but I am not sure that people going through the same thing are the best support. Obviously, all we can really think about is our own problems from our own perspective and I've often found it more annoying than helpful! I have made a couple of good and sensible friends on the MacM boards and we do help each other. There's no physical groups around here at all - I looked! (and I am certainly not driving 50 miles round to hear someone else whinge about their problems - cos I am MEAN!)
I think what I would really like is a person or two who understand the reality (can't go anywhere where there are people for example) but treat us as normal. I do have a few friends like that and they are gold dust.
Ah, I'm just in a tired an moany mood tonight.

five fingers firmly crossed for successful surgery tomorrow...and the hope of a decent night's sleep tonight.

Chasingsquirrels · 29/08/2017 20:25

Maybe chocolate would temporarily help!

Chasingsquirrels · 29/08/2017 20:26

(Or maybe that's just me Blush)

FiveGoMadInDorset · 29/08/2017 20:30

Doctor reckons DH will be home by the weekend, very guiltily I am going to London with the children, with DH's blessing, as we are meeting his niece who has booked to take us to London dungeons, this is in no way as invasive as his liver surgery

FuzzyCustard · 29/08/2017 20:42

Ha no, not just you squirrels

Good for you five. You won't change anything by hanging about the hospital and worrying. Far better you all get on with your own day - and I hope you have good time. (Hope your DH does as well, but in an entirely different way!)

Chasingsquirrels · 30/08/2017 19:27

How are you feeling today @FuzzyCustard?

Hope the op went to plan Five and you all had a good day in London.

Original poster
Willowkins · 30/08/2017 20:46

Hi Guys! It's lovely that you're all still here. We finally heard back from MacMillans nurse today to say that she and a colleague had looked at the scans again and concluded that the liver mets had simply responded to treatment much better than expected. However, the likelihood was that cancer was still there in the liver even if it couldn't be seen. They were more concerned about the new mets in the lungs at the moment. So, chemo starts again next week but might be followed up by more surgery after the next scan in 3 months. Meanwhile, DH and I both have appointments at the GP surgery tomorrow so will be going together (the romance lives on Smile).

OP posts:
FuzzyCustard · 30/08/2017 21:12

Hello all, we've had a decent day.
DH's headache has gone and he's just a bit tired. He had an afternoon nap...but this morning the rain cleared earlier than expected and we had coffee on the beach watching the surfers in the sunshine. Lovely!

(And then we went to Lidl and bought up their remaining supplies (2 packets) of electric toothbrush replacement heads as they fit on our non-Lidl toothbrush and are hundred of pounds cheaper than the "proper" brand. Well it seems that way. No monopoly on romance, willowkins!

I discovered my blood donation has gone to Bristol. How nice they now tell you these things. (It's my form of payback for all the blood and platelets Dh has received. Mostly from Bristol too!)

Willow your news sounds tentatively good? I know nothing is ever that easy to interpret but here's hoping they can do plenty and do it easily.

Squirrels and five - how were your days?

Chasingsquirrels · 30/08/2017 22:44

Glad you had a decent day Fuzzy x
My boys are away with their dad this week and I've just spoken to them - they've been body boarding and apparently the surf was good.

And good to hear from you too Willowkins.

FiveGoMadInDorset · 30/08/2017 22:49

My day with DC in London was great, called the hospital at 5 and he was still on the table, missed a call as I was getting DC's and bags of train, tried to call a coup,e of times but no answer, I don't know whether to keep trying, but they haven't phoned back so guess he is ok!