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. :(

So sorry about your DB. I don’t mean to sound harsh but if no one else is going to (his DD?) then I think you should probably be finding a way to get to your brother ASAP and make sure first hand that he is getting the care, medication and support he needs. Apologies if I am missing something but at this rate it sound as if the poor man is going to die alone.

Thanks,He's not at that stage just yet and he has been in touch with dd but has a history of depression...he does have appointment with Oncologist at beginning of October ( he'd declined further chemotherapy, when offered, back in April)
Unfortunately I have a chronic illness myself and can't drive the distance( and would need to take 4 trains and 1 bus ) , but have already arranged to travel over 350 miles next weekend, with hope of seeing him- if he's willing - ( I am waiting for my dd who is travelling from China to get back home, with hope of seeing her uncle along with my Ds who is a student at city 45 mins from where dB lives)
I have spoken to his dd , who is his next of kin and lives 1 hr away, and advised her of what support is available and that he needs to be in touch with GP and palliative care team
Apparently he's not in pain but it's his mental state that is the issue
He's 70 yrs old ( much older than me) and lived in his own for 15 yrs and is fiercely private and independent

Sometimes its harder to deal with if there isn't anything practical that you can do - and some people with terminal illness don't need or want you to do anything which of course increases our sense of powerlessness.

It's true of course - we are all powerless but we don't like to see or feel this.

My DB (46) has just been diagnosed with a rare untreatable cancer - and like your DB stop he has never been good with contact or responding to messages. I too worked in a Hospice and in the community providing end-of-life care so find it frustrating when I feel I have all this knowledge I could pass on.

However some people (especially those who are not so familiar with death and dying) don't really want to know. They prefer to keep things just as they are as much as possible and the most loving thing we can do is to accept it how they want it - even if in their place we might (although we don't know this) do it completely differently.

Keep some love and care for yourself too whilst you try to deal with the ramifications of what's happening.

simplepimple thank you very much for the above post, even if it wasn’t meant for me in particular. My DiL is still doing everyday unimportant stuff that I just can’t get my head around. In her position I think I’d want to spend quality time with my family (I only think that, but who knows how we’d react in such horrific circumstances) Your post has given me some insight into why she acts as she does. She’s really distressed that she has to tell the three little ones this week. We’ve managed to keep her illness from them for the last two years but because her head will have to be partially shaved for the treatment and she will loose her hair and obviously because of the course her cancer has taken she’s been advised that they should be told. She’s gone through so much to keep her beautiful hair she wore the cold cap all through her chemo last year and although it thinned she still had a full head and the thickness was just coming back. Mostly though it’s the thought of worrying them and taking their carefree childhood away that hurts her and of course it will be harder for her to pretend that everything is normal. I’ve rambled it’s because I’m upset. Her poor her parents are besides themselves, my son is terrified and actually has lost more than her. It’s been the most horrific couple of years and the worse thing is it’s probably going to get worse.your post has been very helpful thank you.

Oops more hair than her. No one will loose more than our wonderful DiL

Thanks for those kind words simple I didn't want to appear as a thoughtless sister....I'm well used to speaking to patients and their relatives about cancer and treatment, but my dB has pulled up the drawbridge in that respect....doesn't want to know anything regarding treatment and his lack of communication makes me realise it's his way of coping and I think his dd is finding it very difficult ( thankfully she's already having counselling)
I'll be going up to Scotland next week anyway to see Ds at university as he's not seen his dsis for over a year , so it will be a bittersweet family reunion
I'll remember the lovely day we had in May...think my dB already realised that may be the last time we'd see each other and him withdrawing is his way of coping
Both my parents died very suddenly and I never got chance to say goodbye to them, but remember them as I last saw them and I have to deal with that ...dreading the next few weeks

I wonder if perhaps our knowledge actually makes those close to us feel less inclined to communicate because they don't want to know yet.

Maybe their preferred way of coping is not to know. I find this hard as my way would be to find out everything. We are all different. All doing the best we can with what we've got.

Remember bereavement is hard enough without us adding guilt or doubt or building our pain any bigger than it already is. There isn't any need to punish ourselves for not doing.

Marmalizes there are some good books to help children to understand loss and death and I've heard good things about families creating a memory box together. Perhaps your DiL isn't sure about how to explain.

I like the sound of your lovely day in May with your DB stop. We had my brothers first wedding day in April - he was so happy he wanted me to pinch him to check it was real. That's my treasure.

I'm also touched by your kindness here on this great thread started so long ago by Charley - we are not alone.

I'm not sure this is the right place for me, but I don't know where else to go. It isn't a relative I'm supporting, just a friend. I currently have her 2 DC here on a sleepover while they are in hospital. Apart from childcare there is nothing useful I can do :(

I would really appreciate some advice on how I can get the DC settled here for future sleepovers without parents, because they are obviously very busy with other stuff. I really can't mess this up & do the wrong thing :(

I believe all are welcome here TR1. You are already doing something amazing supporting your friend by caring for her DC.

Maybe there are no wrong or right things - just this thing or that thing. You are doing your best. That is enough.

My husband has CLL, he’s 33. At the moment I am waiting for his latest blood test results I’m so scared he’s in the appointment now while I’m home with baby and toddler

Here with you DamnIt - my brother is off to Guys today to try chemo - it won't cure him of course but may give him a little more time. He has the complication of 2 previous kidney transplants so they are worried the chemo may impact on his kidney function and as his cancer is so rare they have no previous experience in this situation. I've been encouraging Hospice involvement just to help ensure his medication regime is the best it can be but he isn't ready to consider that yet. Too scary - even though from my past work experience I know the positive and beneficial effect the Hospice team can have.

Let us know how your husband gets on if it helps - hard when you can't be there with him.

Hello everyone

💐

Welcome cancercarousel.

Hello cancercarousel. How are you?

Hi. Can I join you. My husband has lymphoma. He found out in May. Has been having chemo over the summer. We are expecting results from a PET scan to tell if it has done enough. Thought that after treatment we would be ok but waiting for results is driving me crazy.

Anyone on here got a poorly child?

Kids health threads all seem to be about worms/headline/vaccinations etc.

Life limiting illness threads all seem to be about parents/partners/adult siblings/friends.

Not sure where I belong, can anyone direct me?

(DD just turned 7 and has recently been diagnosed with haemophagocytic lymphohistiocytosis - it’s not-exactly-cancer (it’s a super rare ‘orphan disease’ ) but it’s treated by haemotology/oncology specialists and we have a Macmillan nurse. There is global discussion towards having it classified as a cancer).

Hi BettyDumonde. I have a child with a terminal Illness and I have also found it difficult to find a suitable thread. My DD is 9 and has a rare brain tumour.She was diagnosed 9 weeks ago after having months of different symptoms and a previously clear biopsy. I don't know what your DC prognosis is but my DD has been given weeks to a few months. How do you and your family cope?

Hey Glitz.

I don’t really know - HLH is rare so there isn’t much data to work off. Latest studies suggest it has around a 50% fatality rate 5 years after diagnosis but long term, I have no idea.

I don’t really know how we are coping either - managing the rituals and the side effects of the medication takes up lots of daytime hours but at night I barely sleep. I’ve been seeing the hospital psychologist so I can cry it out without scaring or burdening friends or family

How about you? How are you getting by? What are we even supposed to do?

@kernowgal, I am sure we've spoken before but my DH had a stem cell transplant for MDS last year. and is doing pretty well. There is plenty of hope. (and post Tx the infection risk can be managed - Dh had two further emergency admission to hospital for infection and both were sorted out quickly)

I'm so sorry your mum is having to go through all this, but please feel vey free to ask me anything if I can be of any help. MDS is rare, and those that have travelled this road are few and far between.

Hi FuzzyCustard, thanks so much for your message. Unfortunately mum died back in May. As we'd feared, her MDS transformed into acute myeloid leukaemia in Oct last year and she ended up being too weak for chemo, so came home in January and kept going till just after her 71st birthday.

I'm so glad your DH is doing well, it's a really horrible disease and I wish him (and you) all the best. I recall you're down here in Cornwall too? X

Ah kernowgal I am so sorry , both to hear about your mum and also apologise for being crass enough to post about her, not knowing.

It is a horrible disease...and the lack of treatment options make it all the more frightening.

Yes, We're in Cornwall too (the north bit). And are always heartened by the beautiful scenery we have down here. Couldn't deal with all this AND live somewhere horrid! x

You weren't crass at all, no need to apologise! It was very kind of you to think of me and offer advice.

I'm in the south-east. Being able to escape to the beaches/coast path/viewpoints locally has been vital to me staying sane this past year, especially the views from Carnewas across Bedruthan. Just the tonic to the grimness of a leukaemia ward! I am however very sad that mum won't get to see her beloved Cornwall again - she spent many enjoyable hours watching the webcams at St Ives, Fowey and the Minack on her ipad. We will probably scatter her ashes down at St Ives somewhere as she loved spending time there.

Oh Carnewas and Bedruthan! One of our favourite places; it's just stunning. (And we made our first visit to the Minack this year to see Pirates of Penzance - box ticked on our life list!)

We moved to Cornwall a few months before DH was diagnosed. We had no idea anything was wrong - it happened all of a sudden but we are so very glad we moved. The psychological healing it has offered us has been amazing. And we don't even mind the trip to Derriford!

I hope you're doing well yourself and I love the idea of scattering her ashes in a place she'd like to be for eternity. (I'm going for Lundy Bay near Polzeath - that has fabulous and had great cliffs for ashes-hurling!)