A thread for those supporting relatives with life limiting diseases.

[CharleyDavidson]

I know a lot of people come onto here because they are suffering themselves but I wondered if there would be a use for a thread for those who are supporting those who are suffering. Being strong for someone else is HARD and this could be a place to discuss the things that we are up against.

My own dad has a prognosis of a few months for a cancer diagnosis and it's just awful to see how ill he is and how sad he is about things. :(

We're in the depths of neutropenia too, chemo's been delayed. I think it's getting worse not better. Don't know if there's anything you can do diet wise that helps? Have you found anything that seems to help your DH Fuzzy?

We're avoiding the crowds and cafes for now as well, so that's leaves walks which are about 10 mins. I'm doing loads of cooking and cleaning and fitting work round it where I can.

Any more news on the transplant Fuzzy? Must be so hard knowing that's coming up.

Thanks for your kind words 123, hope you're coping.

Madroid, exactly the same here. 10 min walks, no crowds, well, no groups of people more than about 2 in number. DH very breathless and tired and getting worse. Transplant prob early Feb unless a cancellation happens in Jan and he gets bumped up the list.

Love and kind thoughts to anyone in a similar position.

I'd like to join this thread. my DM has cancer and is the middle of chemo. frankly, i'm not coping. I had a complete sobbing breakdown at a dinner party with friends over the weekend. I'm pretty embarassed. I think I've been doing a lot of bottling it up.

my DM is my rock and its just been such a shock. My dad seems to be doing an awful job too. Its so frightening. I also cant bear for her to see me upset. I'm going with her to chemo on Friday and i just cant stop crying. need to pull myself together and get my game face on.

light and love to others going through this.

Hi bumble Sorry for the delay in response, I've only just seen your post. It's a shame this thread is so slow really, as it is probably one of the more important threads on MN!

Crying is so very very normal and I would hope that those close to you understand exactly why you're doing it! In the early days after diagnosis, Dh and I did a bit of crying together, and quite a bit seoarately. It's a bit less frequent now (amazing what you get "used" to) but I sometimes go to the bathroom (only room with a lock on the door) or use the car as my crying place.

If you've not been to chemo before, I find the chemo room (at least at our hosp) a remarkably cheerful and peaceful place. Far less frantic than your average ward or outpatients.

Good luck and virtual hand holding x

Hi Bumble How did the chemo go? Hope you and your DM is getting through it and through the neutro lows ok.

How are you Fuzzy ? And your DH? I hope you've got your car set up with a few things to comfort you. Not ! But perhaps? Look after yourselfx

I've got such mixed feelings about chemo, it's such a blunt weapon. I can see the improvement in symptoms but it's at such a price - a bit of a nuclear option. On the up side, the immunotherapies becoming available sound very hopeful.

I wish everyone on this thread the peace and joy of Christmas and strength from knowing friendship here and in rl of others going through it too. xxx

Thanks madroid . DH was in hospital just before Christmas and I had to call 999 for an ambulance for him on Christmas Day, so we've had better!

We've just had our Christmas dinner now!

Stem cell transplant now confirmed to begin on 30th Jan.

Love to you all. My oldest friend was diagnosed with agressive MS 18 months ago and it's so agressive she has to use a wheelchair or mobility scooter now and it has affected her co-ordination, memory and motor skills. I see her every week at least because I know apart from her fabulous husband and kids she doesn't see many other people. I sometimes come home and shed a tear and I don't want her to see how it's affected me because it's her that's living with it. So thank you for this thread. Thinking of everyone on here.

Hello mycat. So sorry to hear about your friend. And sorry too that she doesn't see many people (unless that's her choice). I have noticed that some people don't know what to do or say around serious illness (or any illness where they can't say "are you feeling better?") so choose to avoid, avoid, avoid. Which isn't really helpful or kind. Sounds like you are doing an excellent job of friendship though mycat

Oh no Fuzzy How scary for you. I hope the response wasn't thrown by it being Christmas? I remember taking one of my dc in over Christmas and having to wait while a consultant was very obviously reluctantly called away from the festivities. It just added to the worry that she wasn't getting optimum care.

How is your dh now? Good to have a date set for the start of stem cell transplant.

Sorry to hear of your friend mycat but I bet she really appreciates your visits.

The ambulance crews were brilliant. Christmas day staff in hospital less so...don't think they are very clued up about neutropenia. He's home and improving now. Still tired but that's the norm!

We enjoyed our Christmas dinner yesterday though! Yum!!

Hello, Can I join you?
My dp was diagnosed with stage 3b small cell lung cancer quite late last month. The doctors acted fast and he's already had his first cycle of chemotherapy. The second was meant to start this week but he seems to have some issues with his liver and the chemotherapy has now been postponed. It's been such a whirlwind few weeks and I'm mostly having to deal with this plus two young children.

Can I also join you please? My df has been diagnosed with Leukaemia , he is devastated as are we all . I want to make it all better and would do anything to change things, it is especially hard for him as he is so active and the utter exhaustion is really what is killing him . The thought of him and the chemo and the side effects and the constant trying to keep buoyant for my family is very upsetting and I just want to make it go away. Why couldnt he just have died in his sleep and not know anything about it ?

Hello Crispy and mrsmad.
I'm so sorry you find yourselves here, especially supporting partners with such horrible illnesses. It's awful and when it is your other half, support is hard to find.

I'm also sorry this board is so very quiet. If only it was as busy as AIBU we'd get more input! (Although perhaps not quite as confrontational!)

Wishing you a peaceful day.

Thank you Fuzzy I posted out of shock amd desperation yet the days roll over and life goes on .........seemingly

Hi Crispy and Mrs. Sorry to be having to say hello :(

Hope the shock is settling down. I'm a few months on now (mum dx in Oct with NSCLC stage4) and I think that shock really knocks you sideways.

I'm still living with mum who's undergoing chemo. Worked well to begin with but some return of symptoms that had initially receded so having some doubts about its efficacy now. Seeing dr on Wed hopefully.

Not sleeping again with worry. Get about 4 hours then all the worries start up again. Trying to stay strong and deal with my own emotions while offering as much support and thinking for my mum as I can.

How's your dh Fuzzy? Are you still on course for transplant at the the end of the month?

Love and to everyone.

Yes mad, still on course for transplant. Donor has his meeting with hospital this week and DH has a few more tests to go. It is nothing short of terrifying but, as mrsmad so rightly says, life does go on. I don't know how this is so, how can the world carry on turning in such an ordinary way?

I don't sleep well either. It's hard to switch my brain off.

Love and hugs.

Can I tentatively join this thread?

My dad was diagnosed with colon cancer in 2015. We knew before he had an op for that that he had secondary tumours in his liver. The bowel went very well. He took to chemo with the other tumours really well. He did so well that they referred him for liver surgery in summer 2016. They knew they wouldn't get all the tumours but they were hopeful they could eventually get him cancer free.
That liver op did go as well as they hoped, so back to chemo he went. This time he didn't respond do well. They changed the chemo cocktail. This made him really sick. 2 weeks ago he went for his normal chemo and he couldn't have it as he was jaundiced with a blocked bike duct.

So now he's on no chemo. I'm pretty certain there's nothing they can do. Everything's so uncertain.

I spent most days in a state of anxiety. I often don't sleep. My main issue is that I live 5 hours away from mum and dad. I have youngish school age children. I'm finding it hard to support them as my whole life is here and I can't 'pop in'. I'm planning on visiting over a few long weekends soon which my dh will have to take time off for.

I feel completely guilty. I feel so unsupportive. So useless. I feel like I've been slowly grieving for a few weeks at least. I fear for the future. I can almost get my head around him not being here, and us missing him. However, I lie awake worrying about my mum. How on earth can I have her close to me?

😢

Hello ok.
I think guilt of one sort or another is a huge part of being a carer. Why can't I make it batter? Why can't I live close enough to be of practical help? What can I do...I'm lost? Whatever our exact circumstances I think this thread runs through us all and I wish I had an answer.

I was a long way from my mum when my dad died and just did what I could with visits, phone calls and practical stuff like phoning officials and helping to organise the funeral. One thing I am glad I did (that no -one else would do, my mum really wasn't able to) was to ask my dad what he'd like at his funeral. When the time came, it was so good to know we had discussed it and I was fulfilling his wishes.

But, nil desperandum. Maybe a different chemo cocktail will sort him out. I hope so.
Thinking of you.

Thanks for replying Fuzzy. It's good to talk.

I found it very heartening that you were also far away from your mum and dad. I feel like all around me are people who live close to their families. Guilt is such a useless emotion but it's very strong with me. You're right, I feel like I should be able to just make it all better. I feel like I'm just watching.

My dad is still here if course but I have no idea for how much longer. Hopefully longer than I think. However I feel like I have a 'soup' in my head of how things will be when he's not here. I don't want my mum to be lonely. It's almost like I want the the future to be all planned out - which of course is impossible. I need a plan. It's the logistics of things that make me loose sleep. Then I feel awful for thinking about how things will work when dad's not here.

Anyway, it's good to write it down. I'm glad I found this thread. Thanks xx

You're welcome. We're all just making this up as we go along, aren't we?
It's a shame this thread is so quiet ( perhaps we should mention a bit more parking!) but I guess this is a place no one asks to be.

Does your mum have a full life where she is now? She's maybe considering her future, in all its different guises and possibilities, and has thought out some plans of her own. Have you spoken to her about it at all? It's rubbish advice, but all you can do is take one day at a time. As you say, your dad might ( hopefully) be around for ages yet!
X

Yes It is a shame there is not a lot of posting but on the other hand it must surely mean that this hell is not affecting too many of us mumsnetters please God. I hope the transplant goes well my dear Fuzzy and I am so sorry about your father OK. It is a living nightmare, my poor dad couldnt get out of the bath this morning it was just awful....such a loss of independance and so pitiful...my heart is full of pity and sorrow for him is that the right word its that feeling of utter fear and sadness and compassion for them going through this terrible time. We went to see the oncologist today because of dads type of leaukaemia there isnt a lot they can do to treat him just keep him comfortable...with platelet transfusion , blood transfusions and tablets for pain and infections. I dont know what is going to happen it is all up in the air ....I think that is the worst really the not knowing the worrying and the dread the dread of watching someone you love someone who has always been strong gradually get weaker over time and all of us pretending that everything is going to be alright , take care everyone and I hope you get some sleep my dears

Hugs to you Mrs. My Dh is also going through the frequent blood and platelet transfusions so I understand what you are saying. They may be not much in themselves, but the need for them is great and the symptoms so debilitating. Blood cancers are so very difficult.
x

Can I come and join in too please? Took my Dad along to the hospital today for an endoscopic ultrasound and biopsy, results of which are due in around 10 days or so. He had major surgery last year to remove cancer from his colon and now has a colostomy bag. He has prostate cancer and a type of leukaemia that is apparently 'common in older people' (he's 86 next month), and he had a quintuple heart bypass op six years ago. My mum had a sub-arachnoid brain haemorrhage last year, has made an amazing recovery from that, but has other health issues of her own. Her mum, my Nana is in the final stages of lung cancer - in a hospice thankfully, but Grandad is struggling (also has health issues of his own) Took mum to see Nana a couple of weeks ago, essentially to say goodbye - horrible, so so horrible (we live in West Wales, Nana is in Stoke on Trent, Mum's brothers are both nearby in Stoke though which helps). My brother lives a couple of hours away from here with his family, and is in the midst of dealing with his business having gone in to administration just after Christmas. I'm a single mum to 3 lively lads, they do spend time with their Dad thankfully (and their new baby brother), and also currently looking for work having ended up unemployed at the start of the month after handing in a sick note citing stress and being questioned as to whether I'd cope with the job going forward - I said no and suggested terminating my contract - actually right now probably the best thing all round! My DP doesn't live locally, we do get every other weekend together though which is lovely, and in some ways an opportunity to 'escape' for me.

It's looking like my Dad has pancreatic cancer. A good friend and mentor of mine is in the final stages of this particular bastard at present. Utter utter shite all round. My Dad is scared, my mum is scared, I'm scared but trying so hard to hold it all together for them, for my kids, for me. Sorry for the rather long outpouring - it's all just got to be a bit much today.

Hugs Fuzzy and Frazzled xxx
Frazzled I have decided to retire from work I cannot see any other way to go my dad does so much for my mum, she has very bad arthritis,( he has always been the strong one) , I have to give up and look after him and her.
I love my job but I love my family more. Between a rock and a hard place ,
do what you feel in your heart you need to do , they need us now more than ever xx

Thank you Mrsmadevans. I'm feeling better for not being at work at present, although I have to be seen to be actively seeking employment to maintain the status quo on JSA - though to be fair, I've explained my circumstances and they've been quite good on agreeing that PT roles are fine, and that I can't do shifts etc, so so far I've not been nagged into applying for anything and everything! My mum rang this morning to say that Nana is now very close to the end, I've been dreading the phone ringing all day, but suspect that call is going to come very soon.... that's going to be hard to bear for her, and her Dad, my Grandad isn't coping now and I suspect will deteriorate rapidly too, more worry for her, on top of waiting for Dad's results, and her own health too. My eldest ds text me earlier (from upstairs in his bed!) to say that he knows he and his brothers can be a bit stupid sometimes, but that they all love me very much (I'd been a bit 'shouty' this evening :( ) and when I explained that Nana was very very poorly and I was worried about her and Mum he replied saying that having poorly relatives can be very hard (his baby half-brother was in NICU for a month and I was hit by the realisation that he and his brothers have also had their own worries about things that I'd perhaps not fully appreciated). My kids are amazing, they've coped with some pretty full on crap themselves along the way, that little message from him tonight helped a great deal (they don't yet know what Grandpa's tests are for). Thank you for the hugs, and I hope that you are able to find time to care for you too as well as your parents.