I'm not OK

[Willowkins]

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?

Thank you. Lots of , (for me!), . I've even put in a swimsuit but may frighten the natives!

How is everyone today?

I'm struggling as my DH is still suffering with a painful/weak leg. He says it is probably muscular but I can't help feeling it might be something more sinister. He has a scan next week so hopefully that will pick anything up. After nearly a year of shock diagnosis, treatment and getting my kids through this I think I will lose it if has spread anywhere else. It just seems never ending.

Oh Tasmanian of course you're worried. Cancer has a way of knocking bits off our confidence. Here's hoping the scan next week is a good one. Meanwhile, sending you a rainbow for hope.

Thanks Willow.

tasmanian I have exactly the same fear. Sadly I was right about DH's leg, now I'm thinking bowel.

Hope we're both - all - wrong. But I'm losing faith in the hospital team, even though he isn't which is more important.

Having lovely, very, very lazy time away! Quite interesting to have steep hills for me to tackle on a walk.

and to everyone. I'm trying-ish to live for the moment, hope you can too.

You are not selfish. You are stressed beyond a manageable level, not surprisingly.

and maybe some too.

Thanks Adorabelle and welcome to the thread.

PPs may recall that I self-referred for counselling a little while ago. I had my telephone assessment today. She asked me an interesting question which was: what outcome did I want from the talking therapy. Not sure what the answer is but for now would be so happy to stop the stress being triggered by all these things I can't control.

Hi Everyone! DH and I are back from a lovely break. Not that we did anything, in fact DH didn't even leave the hotel, but I walked to the extent I felt to be on nodding terms with the village down the hill residents! Where we live is flat, so my hips and Achilles are in shock.

On return the GP's Care Plan was waiting, all set up and various people may or may not be in touch. I'm impressed and it also brought up for discussion whether DH would want to be resuscitated, etc. No, he says, he wouldn't the way he is now - and neither would I. So that needs to be recorded on the plan too. Another hurdle accomplished.

Willow that's a form of the 'miracle question' beloved of us counsellors, although I used a different phrasing. The response you've outlined should be a real help (gift) for your therapist.

I'm glad you both had a lovely break Selena.

This whole experience has taught me do to things now and not put them off untill later!

I'm also glad you had a good break Selena. Memories to hold on to.

The DNR is so hard, John was asked this during his hospice stay - and I already knew the answer, and tbh what would be the point, but just hearing it asked and his reply was like a punch in the gut. And then seeing it written down.

Yes, squirrels - I can only imagine how it's going to feel. I remember reading somewhere or other a doctor describing his absolute frustration and sadness that a terminally ill patient had to endure the crash team service, broken ribs, intense bruising, simply because no-one had asked the DNR question.

We have the Oncologist appointment on Thursday, feels as though it's hanging over us like a cloud. It's lightened in a sort of weird way as there is a fellow hospital volunteer (I do 2 or 3 x3 hour shifts a week) who presides over the 'free' teas and coffees in the unit. She almost demands you pay. 'It's for the patient, not the people accompanying. Don't you think you should donate?', she squeals. 'No, I don't,' I reply. 'We're sharing it.'

'I'm going to report you,' was her latest mutter. from me.

Wow, I'm scared. It sets/girds us up for the actual appointment though.

Well she's a jobsworth! Surely they are for everyone anyway? Fingers crossed for the appointment.

That's ridiculous to pay when you already volunteer. Ignore, ignore.

Good luck with the appointment.

Hello all, may I join in please?
My DH has recently had a stem cell transplant for a fairly rare bone marrow cancer. He is theoretically recovering but it is so up and down and up and then down again...blood counts, chimerism levels viral reactivations - we have it all.

I am exhausted.

And it has hit me that there is no cure for cancer, just (if we are very lucky - he has been given a 50% chance of it working) a period of remission.

It is such a complex disease and treatment it's hard to get anyone to understand where we are with it... "Is he better?" "I'll tell you in a couple of years when the risk of relapse reduces. Until then it is day by day". But I would so like someone to ring me up and chat, or let us know they are still thinking of us.

FuzzyCustard I have no experience of the cancer your DH has and the things you are dealing with, but just wanted to send you some love and hugs xx

Hope Willowkins and Five are okay.

Evening, all ok here, DH is getting really fed up with numb hands and feet , a consequence of one of the medications that he was on, but feeling good otherwise, imploded 14 miles yesterday before I go t beaten by the heat and then was selling my wares today, tomorrow is bowling and food with children.

Selena, sometimes it's just nice to see somewhere different, sounds lovely and good exercise for you, I have found the walking a big stress relief and will be carrying on after the walk.

fuzzy sorry to see you here but welcome

Hi Everyone!

I've just remembered Five that my DH had numb hands after his triple bypass - still unbelievable to me that a fit, non-smoking, non-drinking, never overweight, rarely stressed lovely man could have a major heart attack, get over it incredibly well - and now be struck down with Stage IV aggressive cancer. Or are they linked?

A friend who's an accredited Personal Trainer gave him some quite simple hand and foot exercises to do as often as possible but especially in the evening. We also got some hand exercisers (started on lowest setting, now much higher). He also went to a Sports Physio on the recommendation of our PT and that helped too.

FuzzyCustard - hello and sorry you have to join us .

Squirrels and Tasmanian - the woman also writes notes and sticks them all over the unit's kitchen, much to the delight of the staff! Nowt so queer as folk and all that (well, I have been in Yorkshire).

You're welcome Fuzzy but sorry for the reason you are here. You are however in good company. We are all well aware of the up-down-stop-start nature of treating cancer and the sheer bloody terror of what the next results will say so you will find here people who understand what you're going through. for everyone undergoing tests/results/side effects/symptoms this week.
I have also escaped to the country for a night away and it is just so pretty here and there are lambs - just so cute!

PS Thinking about it, I'll be quite disappointed if she's not there on Thursday!

Hello everyone and welcome to Fuzzy.

Lovely sunny Bank Holiday here so off to local Scout fair. Sunshine does make everything feel a bit better doesn't it.

It's such a long hard road Fuzzy. I have times when I can put it to the back of my mind and other times when I feel panicky and overwhelmed. I have great support from close family and friends but others I thought were friends I have never heard back from, not even a " How's it going" text. I think some people don't know what to say. Oh well, scan and results next for us. I hate this bit

Thanks for the welcome everyone. We've been on this journey since last August wit an unexpected diagnosis...we though it might be heart trouble but the severe anaemia caused those symptoms. Within a day we had the proper diagnosis.

Funny isn't it how some friends are good and others have no clue. And not always the ones we expect to step up. Or "don't know what to say" so they say nothing, which is the worst IMO. Just say it's bloody awful!

Raining here for the second day, but I don't mind too much as the garden was crying out for water and I had chucked lawn food on the grass and it needed watering in, so has saved me a job which I would never do as well.

We have hospital visits once a week, so only have to wait 7 days for the next episode.

Wishing everyone here the very best. Of everything.

My DH has PET-CT scan scheduled for tomorrow. I'm just hoping it will go ahead this time.

Fingers firmly crossed Willowkins. There's nothing worse that the interminable waiting.

Just saying hello.
Hope the CT scan goes ahead Willowkins.
John's treatment was nearly all private through his work healthcare, it certainly made things easier in terms of getting scans etc scheduled but usually we still had to wait for results as scans need to be written up etc before the consultant could comment.

The friends thing is odd - my two closest friends have been great, plus a couple of others - one of whom stepped out from being an acquaintance and has been fantastic. And work has been fantastic. But other people as you mention just don't know what to say, I think that might have been me previously.

Fingers tightly crossed, Willow.

DH seems to be intolerant to the Ensure, and Fortisip. Go straight through him, so distressing for him and rather counter-productive. Also had a call to say his very good friend, who was suffering (or his family were) with Parkinson's dementia for 5 years, had died.

The Thursday Oncology appointment seems both far too close and far too far away.

'Now is the month of May', and whatever we used to sing - not getting off to a merry start.

Cheers and to everyone!