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Anyone interested in a thread for those of us with partners with serious illnesses?

(18 Posts)
Yvest Fri 20-Apr-18 18:31:14

There was a bit of a thread on chat which has disappeared but I got a lot of comfort from chatting to other people with partners with serious illnesses especially those which are likely to be life limiting and still have children at home.

My DH has an extremely rare stage 4 cancer which is currently under control using hormone therapy. He’s very well in himself, working full time etc and day to day our lives are currently the same as ever but at some point this will fail and we will be moving on to other treatments. We have been very proactive and have an excellent team of specialists working with us. We’ve gone privately as treatment options are limited on the NHS and we have nagivated huge amounts of research to explore possible treatment options from people who specialise in his cancer.

We’ve 3 kids, one primary and two secondary so it’s all a bit rubbish but they’re handling it well. They know he has a treatable but non curable cancer but as he’s well I’m not sure how much they’ve taken it in and we haven’t gone in extensive detail with them, more given info on a need to know basis.

Thinking of Dahliaaa, lastofthegrundys and another lady whose DH was recently diagnosed with prostate cancer plus a very nice helpful man who is also living with prostate cancer.

Diangled Fri 20-Apr-18 21:30:47

Hi Yvest, I was just thinking of you & came across this in general health. Fabulous idea for a thread as everyone was so helpful on mine last month when we were going through the hell of waiting for a diagnosis.

DH diagnosed 4 weeks ago today with advanced prostate cancer which is in his bones & pelvic nodes. He has begun his hormone therapy & will begin chemotherapy in the next few weeks. As the shock of the diagnosis is wearing off life is carrying on pretty much as normal.

We also have 3 children, 1 primary & 2 secondary, 1 of which has significant special needs. They are all dealing with it well although the eldest (17) probably struggles the most. He is very close to DH’s older sons from his first marriage & they are being a huge support to one another.

DH is incredibly positive & planning on being around for a long time yet. As for me, I’m fine until I let my mind wander too far in the future.

Did your DH get his scan results yvest? Hope all was as you’d hoped.

Yvest Fri 20-Apr-18 21:45:04

Hello. Lovely to see you. Yes, he got the results last week and thank goodness they showed improvement again and the metastasis is almost gone and the PET scan shows reduced activity everywhere except the main tumour which is stable. The Dr is very happy and he will see us again in 2 months. If the main tumour remains stable he said that DH can have the option of some radiotherapy on it as it should respond well to it. He doesn’t know yet if he wants too. He also said that if things still look positive DH can also consider reducing the tablets a bit but again, not sure he wants too.

Most excitingly he’s referring us to The Christie in Manchester to someone else who researches this cancer and he will do full molecular and genetic testing of DH and the tumour which should tell us exactly which available treatments are likely to have the best effect. It’s good to get this done while he is well so that we can have it ready for when we need it. Just need to chase the secretary for the referral. As we’d be taking quite a trip up to Manchester we think we’ll make a weekend of it and find a nice hotel because as DH said, we might not get another chance.

Glad you’re starting to feel a bit more normal. I dealt with this scanxiety much better than the last one and only started getting myself stressed about 3 hours before we any in but nearly had a nervous breakdown when the woman before us came out and we had to wait 10 mins to be called in. I was convinced they were planning how to break bad news to us when most likely he was finishing up with the notes from the previous patient and going for a week and a cup of tea.

Diangled Fri 20-Apr-18 22:37:47

That’s fantastic news! So pleased for you. Great about the referral too, especially as your DH’s cancer is so rare. It must give more hope when you hear of another specialist.

DH is coping well with the hormone therapy so far & he has an apt with the oncologist on 3rd May. I’m guessing we’ll get lots more info then about future trials etc. He gave the HR manager written confirmation of his diagnosis today & what time off he may or may not need & she told him her Dad was diagnosed with stage 4 prostate cancer 14 years ago & is still alive, working & enjoying life. Apparently he’s been very heavily involved with trials, including the chemotherapy that DH will be having. Nice to hear personally how the trials really do make a difference.

Loving the scanxiety term btw! Sums it up perfectly I’m sure.

Yvest Sat 21-Apr-18 17:13:08

Thank you. I am delighted that we’ve been referred. This guy should be able to use the tests to tell us what options we have including immunotherapy and targeted therapies so it’s actually very exciting.

I’m loving the story of living 14 years with stage 4 cancer, that’s just what we like to hear. I hope it’s the same for all of us. Glad your DH is tolerating the hormones ok, it’s a funny one.

Last week I had mammogram and ultrasound and a couple of breast cysts drained (often have them) so know I am ok on that front. This morning I had a full gynae check and smear and I’m having an ultrasound and bloods next week too. Gynae said he has no concerns whatsoever but as I’ve got so much on at the moment he’s giving me a full service 😂 so that I can put any worries behind me. He also told me his friend had the same stage 4 cancer as DH 16 years ago and is fine.

Just been out with DD who has just emptied my bank account in Primark and off for a nice dinner with DH tonight, teen babysitting for youngest so that should be nice.

RussellGroupIe Sat 21-Apr-18 18:03:15

Just a thought ... Relationships might be a good place for this thread.

There is a long running thread over there supporting Juan and all. And a new thread for those of us struggling with certain aspects of being in our 50s. Relationships seems a good fit.

Like a said, just a thought. And best wishes to you both and your husbands.

Yvest Sat 21-Apr-18 18:08:45

That’s a good idea. I’ll aks for it to be moved

Yvest Sun 22-Apr-18 14:34:18

This has now been moved @lastofthegrundys how is your DH doing

ThePinkOcelot Sun 22-Apr-18 14:54:51

My DH isn’t terminally ill with cancer but is in ill health with a debilitating chronic illness which affects our lives.

He had an accident in 1995 which has left him with post traumatic headaches, trigeminal neuralgia, chronic fatigue and back problems. He has other things as well but too many to list really.

We have 2 dds. Now 16 and 13 and it has been like bringing them up single handed sometimes.

I’m really sorry for those of you living with a husband with a cancer diagnosis, that must be awful. I hope you don’t mind me posting.

epicclusterfuck Sun 22-Apr-18 15:02:55

The pink my DH has Parkinson's disease as well as chronic pain/back problems. He is no longer able to work and to be honest I think is beginning to have some problems with thinking, planning etc. We live separate lives pretty much as I work and mostly do everything with two teenage DC. I'm not sure what the future will be for us but feel much much older than I should!

ThePinkOcelot Sun 22-Apr-18 17:42:37

Cluster, me too. I’m 50 but feel much older.

My DH hasn’t worked (apart from a few months after a year on the sick) for years now and I work full time.

He also suffers with depression so it’s fun and games in our house. I don’t think people realise what it’s like living with a partner who is ill 24/7!

RussellGroupIe Sun 22-Apr-18 18:24:30

Yvest - I promise to stop interfering in your thread but you need @oneofthegrundys (it's an Archers thing!)

Yvest Sun 22-Apr-18 18:34:20

Thank you. Please feel free to interfere as much as you like. 😊. Lovely to have everyone here, whatever conditions their partner has. None of us are living the life we expected and it’s great to have some moral support. Our weekend has been as normal as it could be. One child gone camping, 2 at parties, dinner out with DH last night and the usual teeth pulling trying to get the youngest to learn spellings. I just hope we’ve a good few more like this one.

Diangled Sun 22-Apr-18 19:03:59

Hello all smile.
In some ways I wonder if living with DH’s cancer diagnosis sounds easier than those with chronic conditions. DH has no symptoms currently & day to day living is pretty much the same. Just with this gut wrenching fear of what is to come.

It is DS3’ birthday today & we’ve been out for the day & met my brother & his family there. Really lovely day which we’ve all enjoyed. Knackered now though!

ThePinkOcelot Sun 22-Apr-18 19:52:40

Really glad to see you’ve had a good weekend and day, though tiring lol!

Nice to have someone to talk to x

Yvest Mon 23-Apr-18 19:25:18

django I have wondered the same. DH currently has no symptoms either. He just got home from work and is now doing something involving his wires and a toolbox and he’s singing to himself as he does it. It’s so hard to believe that he’s ill.

It must be such a life changing experience to love with someone with a chronic and degenerative illness, a life you didn’t expect. I have a friend whose husband had a stroke in his 40’s about 3 years ago which has left him with life changing disabilities and, not that one can say, I often think that must be much harder than dealing with something like cancer. It’s all a bit shit quite frankly but the way things are with us, I am hoping that we’ll move through each stage and deal with it as it happens.

Anyway today was fine. I work from home on a Monday and was busy from the minute I switched my laptop on until the end of the day, almost entirely on calls to my team but it keeps me busy so I can’t complain. Really missing the eldest who is on a D Of E trek so hoping it has all gone ok but can’t wait to see him tomorrow

OneOfTheGrundys Fri 27-Jul-18 16:22:04

Hi everyone!
Are you all still here?
I dropped off... work, routine, treatment etc...
DH is doing well. Still very poorly, still life limited/terminal but tolerating treatment really well.
You have been in my thoughts each day.

Armchairanarchist Fri 27-Jul-18 16:26:46

I'd be interested to see the other point of view. I'm the ill partner.

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