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 Willowkins.
To be honest, the last couple of weeks I have been struggling - not like I was at the end of May/beginning of June when I felt like I was in a pit I couldn't get out of, more very fragile and only just (and not at times) holding it together.
I will carry on, life will just be different that I imagined it but hopefully will bring happier times again in the future.

Hello all, I am still here lurking!

Wanted to say thanks for the support when I was feeling low, it really helped.

We are off on a much anticipated holiday next week after a rotten year ( we had to cancel last years) so we will make the most of it. Big shock trying to get affordable travel insurance for DH😳 so we have had to go with our usual policy without any cover for cancer.

Hugs to anyone going through difficult times.

Have a lovely holiday Tasmanian. I think Martyn Lewis was on about extortionate travel insurance, or maybe - dare I say the words - Daily Mail.

There's a company called Swiss Assist who organise repatriation by private jet in case of injury or need for hospitalisation for more than 3 days, when at least 400 Km from home. Not expensive. Have purchased in the past but never had to use. Peace of mind, maybe?

to all, your support is so appreciated. squirrels and hugs too. Not easy, is it?

Thanks Selena.

Hope you're well ok

Hi - another one here with a DH with cancer. I'm so sorry to hear about everything you are all going through. It's so tough, isn't it? The waiting and not knowing and feeling like there's an axe permanently hanging over your heads.

Our story started at the end of last year when DH felt a little breathless. A blood test later and our Christmas plans were shelved as he began chemo for an aggressive type of leukemia. Thankfully he was in remission after two rounds and is now 6 weeks post transplant (bone marrow). We were lucky that a family member was a match for donation and have had a lot of help from family (things are complicated as we don't live in the UK, we are in the US for his job). All that said, it's a long road ahead, he is currently staying close to the hospital with his parents whilst I am at home with our young children. They see him once a week at the moment. It's hard for them to understand.

Anyway, hope everyone is doing as well as they can.

Hi Sprinklestar

Seems like you've been through a lot. Take care of yourself.

Hi Sprinklestar my DH is also post transplant (Also allo with a sibling donor). He's coming up to 6 months post transplant and a year from diagnosis and is doing ok, but as you know there are many ups and downs to be borne along the way. Current issue is low donor chimerism, which the medics are trying to deal with through lymphocyte top ups.

Yep, you're right. it is hard!

Welcome Sprinkle. I agree the waiting is hard and I really feel for you and the DCs being separated albeit in a good cause. We just passed the 1-year-from-diagnosis mark and are currently waiting to find out if it's going to be chemo or surgery next. I'm afraid the waiting defines us.

Thank you all for replying so quickly. I wish we had crystal balls to see what our futures hold...

Tasmanian - you too. Sending you good wishes.

Fuzzy - can I ask where in the UK you are? We will look to move back at some point but want to be close to a good hospital for this kind of thing. At the moment all of DH's treatment is covered by insurance and being the US, it's amazing. We will hopefully be able to transfer the insurance coverage to the UK as from what I can tell, the NHS doesn't cover more than one transplant of this type?

Willow - do you know when you'll find out or is that a silly question? I find I pin a lot of hope on 'news' but then often no news is good news... I hope whatever comes is bearable and at least a step in the right direction.

Fuzzy - we spoke to DH's Dr about this today as a back up option:

mobile.nytimes.com/2017/07/12/health/fda-novartis-leukemia-gene-medicine.html?referer=http%3A%2F%2Fm.facebook.com&smtyp=cur

We're in Cornwall. We've been very happy with the NHS so far. I think this kind of coal face, cutting edge medicine is what the NHS does so well. Private medicine here would not do SCTs.
I've PMed you.

No such thing as a silly question in this game. We had the scans last week and the MDT (Multi Disciplinary Team) meets every Tuesday so if suitable for surgery, could hear tomorrow. However if chemo, appointment with oncologist not for 2 weeks. McMillans been really good at keeping us updated and we can always phone them and ask. We live in Kent and our NHS has been amazing.

Hi everyone, I hope you are all doing well. I'm sorry it has taken me so long to reply. We have had a crazy week with the children on school holidays and shuttling back and forth between where we live and the hospital. DH is doing well this week and we have moved from daily hospital checks to every two days. Small steps. We're still looking at another month or so until he is able to come home but for now it's looking hopeful.

That's good news Sprinkle.

Currently waiting for DH to have a follow up colonoscopy! Am crossing my fingers all looks ok.

Crossing fingers for you Tasmanian

All came back normal thank goodness. Doesn't stop me stressing out tho!

Just back from a few days away. How is everybody. That's great news Tas. We have our next appt with the oncologist this coming week so will get the results from scan and also plans for treatment.

My husband has been diagnosed with non hodgkins lymphoma.We have two young children.He is being treated at a hospital quite far away.Due to the high strength chemo he is an inpatient for the duration of his chemo.

Hello all. We had better news this week, DH's donor cells are doing their job pretty well at the moment - looks like the extra lymphocytes have halted the slide. Much relieved.

That's sounds like very good news Fuzzycustard.

Welcome Moomin though of course sorry for the reason you're here. Will he be in hospital long?
Good news indeed Fuzzy.
Now how about a nice cup of gin tea?

Hubby will be in between 3 and 4 months but probably the latter.It depends how his treatment goes and what infections etc he picks up.A stem cell transplant may be a possibility.

That seems really hard especially as you have young children. I hope you have help in real life.

Just back from the oncologist so here's an update.

OK so bowel tumour obviously gone as they got it all in surgery. Lung mets which we thought had gone have reappeared - so maybe they had just shrunk too much to see but they were lurking so to speak. Liver mets have shrunk too much to see on the scans - I have no idea how that is possible since DH has not had any chemo for 5 months. Anyway more chemo to start in a few weeks.

I have been a lot calmer these last few weeks. As well as the counselling and all the lovely support on here, jigsaw puzzles have made a surprise return to my life - whatever helps I guess.

Anyway, despite the thread title, I think I am actually ok for the time being.

Peace, hugs and to all.