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. :(

millie so sorry you are going through this. I remember the terror and fright. It's the uncertainty of it all. I was a wreck for the month or so before my dear dad died. I couldn't eat or sleep and think I became a bit of a nightmare to live with
In the end I got some 'kalms' tablets which helped a bit. I would encourage you to go to your GP, mine has been wonderful and signed me off work which was one less thing to worry about.
I work in the hospital where dad died which I guess is similar to your situation.

Hi Millie, how are you? Have you had any results yet?

I am an only child and completely relate to all you are feeling.
It's been a couple of weeks now since we were told dad could basically drop down dead at any second. My anxiety is through the roof but I am finding I am getting used to this new normal. I am finding I can eat again now and although I still have to listen to something to fall asleep, I generally do sleep through the night now.
I think we just learn to get on with it as we have to, bloody hard but you do.

Sending hugs to you

I hope you don't mind me posting, I've just found this thread. DH has been diagnosed with lung cancer, but we don't know what type yet. He has had the PET scan and biopsy, that revealed the tumour is growing round his pulmonary artery and aorta so is in a tricky position. The biopsy was inconclusive as to whether it's spread to the lymph nodes - we thought he had the all clear about it spreading, but the surgeon he saw yesterday was less convinced and has ordered an EBUS. The original plan was to open him up and remove the tumour so they could examine it and determine what kind it is, but the surgeon thinks thats too risky because if it is in the lymph nodes, then surgery is contraindicated and he wants to be completely sure what he's dealing with.

My work have been great and have enabled me to attend every appointment with DH. He has a hospital phobia and although he's getting better at coping, he is in a state of panic the minute he walks into the hospital. His blood pressure is too high for the EBUS so he's on beta blockers to address that.

The tumour is quite large. He won't even look at the scan, but I looked and the consultant explained it really well to me. We are both terrified but I feel like I have to be strong for us all - the boys are worried and although they aren't children any more - they are 36, 30 and 17 - they are so close to their dad. DH was a single parent to the two older boys from when DSS2 was a baby, so they can't imagine life without him.

I am just rambling now. It's a very lonely place to be though, I don't have anyone I can talk to really. My parents are very shocked and upset, but my mum is unwell herself and my sister is struggling with her mental health to the extent that she has been hospitalised for most of the last two months, so my parents have a lot on their plates. My grandmother is there for me but she's 88 and I worry about burdening her.

May I join? I'm feeling a bit overwhelmed and a fraud as I am in good health. In twelve very short months my DH and DStepF have both had cancer diagnosis. My DF is currently very unwell and the doctors are very unsure what is going on, now my BIL has a cancer diagnosis. This alongside very poorly parents is just a bit overwhelming.

penfold & Andnone ⚘⚘
I'm so sorry you are going through this, I hope both your loved ones get treatment soon. It's so tough when there's so much else going on in the family too. Look after yourselves x

Today DH went for an EBUS. They also did another camera down his throat, but he started to bleed so they had to stop. However, the surgeon said he found two more lesions in addition to the tumour, one in his lung and one in his throat.

Finding it difficult to think positively. It will take two weeks for the results to come through. He is still in hospital, struggling to keep his oxygen levels up and keeps having apnoea episodes. His blood pressure is so high as well. He is seeing the ENT consultant tomorrow about the lesion in his throat, hopefully we will know more then.

I just feel rubbish because I don't know how to deal with it all. DS is terrified and I can't comfort him. How do you keep going?

andnone I'm sorry you are struggling. I don't know how you keep going really. Just take each day as it comes and deal with whatever the day brings. Try not to think too far ahead. That's how I coped anyway. Live in the moment x

Thanks myguide. It all feels so bloody relentless in some ways, but also a bit like an out of body experience - is this really our life now? Just as we were getting to that stage where the kids were grown and i was earning decent money, and the rug has been well and truly pulled out from under us. I know it's an indiscriminate disease but i haven't had first-hand experience of cancer other than my friend who died in January, and she kept most of her illness a secret until the end.

I posted in chat last week but will come and join you all here if that's OK.

Mum has had myelodysplastic syndrome for several years with regular blood tests; a recent test made the consultant ask for a bone marrow biopsy and lo and behold it's transformed into leukaemia (acute myeloid), which it often does. She's had various tests to see if she's physically up to chemo, and the good news is that she's otherwise hale and hearty (even if she doesn't feel it) so the chemo can go ahead.

Her consultant has said she has two options: a 'soft' type of chemo which keeps the symptoms at bay for a few months, or the full hardcore chemo with five to six weeks in hospital. She sounds very scared and down about it all - the full-on chemo carries no guarantees but at least brings a possibility of remission (together with a stem cell transplant); the other option is basically deciding to die.

She's wavering about it because she's scared she's going to die from an infection caused by having no immune system after the chemo. But if she doesn't have the chemo, she dies anyway. So to me it's a pretty shitty Hobson's choice, but with the possibility of a good outcome. Her age is somewhat against her, but in her position I would take the chemo, because it's an option. I think she is scared that she's going to go through the misery of chemo only for it to fail and then she faces yet another conversation with the consultant where it's only shitty news.

I've not tried to sway her towards going for the chemo (although dad says it seems she is edging that way anyway), because the decision is hers and hers alone. But I am desperate for her to give it a go, for the chance that it might knock it into remission and give us another year or two with her.

Can I add: I'm truly sorry that you all have a reason to post on this thread/in this board.

kernow I'm so sorry that your mum is so poorly

DH has said that if his cancer turns out to be terminal, he won't want aggressive treatment just to prolong life for a few months, he would rather just enjoy what time he has left. I want to support his wishes but feel so selfish thinking that I want him to take every treatment and stay for as long as he can.

I know that we are still in the early days and don't know the prognosis yet, so it seems premature to be talking about this stuff, but he is thinking about it and wants his wishes known as soon as possible in case anything happens.

I know exactly what you mean - it feels so selfish but it's only natural.

Mum's currently in hospital being treated for an infection, but she's responded well with antibiotics and is looking much better. She's decided to give the hardcore chemo a go, so I'm expecting the next few weeks to be pretty horrible.

Hope you are all doing ok.

Been to see the consultant again today. DH has been told it's "at least" stage 3 lung cancer, with another tumour growing in the bronchiole, but could be stage 4 - they don't know and won't until they attempt the lung removal. There is a risk the tumour has penetrated the aorta - if it has the cancer will be in his blood and he will need chemo. If it hasn't and the surgeon can move the tumour away from the heart, he will remove the lung completely, then follow up with some chemo or radiotherapy dependent on what happens, but he will discuss that with us later on. If he can't move the tumour he will close DH back up, and go to chemo.

It's frustrating to still not know much more. They are treating it as if it's stage 4 apparently, but may be able to down stage it to stage 3 if the tumour is removable. DH is starting to be symptomatic, he is coughing up blood much more regularly and is breathless most of the time. He is losing weight as well.

I don't really know what I'm hoping For, posting this update. It's not much of an update as we aren't much further on, but I don't have any other outlet really.

I know how you feel. I'm sorry that you haven't got the answers you need. Have they given a date for surgery? How is your DH feeling about it all?

Mum's been moved to the big hospital to get her ready for chemo. She's been up and down, with possible pneumonia in one lung, which had been responding well to antibiotics but is stubbornly not shifting. She was supposed to start chemo today but she wasn't well at all this morning so they've whacked another load of antibiotics in with the aim of starting in the next couple of days.

She just looks exhausted, and the chemo hasn't even started yet. I'm struggling with seeing my usually active and talkative mum reduced to this poor little old lady, weak and breathless. I live a four-hour drive away so am having to visit on weekends and I always seem to leave her when she's looking dreadful. It's terrifying, each time I wonder if it's the last time I'll see her, but I can't even give her a bloody hug (which both of us would love) because of the risk of infection.

Fuck cancer.

I've just seen your original post upthread - I'm so sorry. It does feel very lonely, although I have workmates going through similar so we've become a sort of support group for each other, which is a huge relief.

That said, I've struggled with people who don't seem to understand how utterly terrifying and exhausting all of this is. I'm very good at putting on a brave face but I don't know how long I can do that for.

Please do PM me if you'd like to chat or just offload.

Thanks kernow. He will be having the surgery in the next couple of weeks, he's been signed off work for 3 months so will be sat at home brooding while I'm at work. I suppose at least we are together, so I don't have the same worry as you about whether this is the last time you'll see your mum. We have plenty to be thankful for, like we have had a great life together and plenty of people are in worse situations than us, it just feels difficult to reconcile that with what's happening now.

Can I sign up please?

My lovely Mum has been suffering with suspected labrinthitis for the last few weeks, with awful nausea and dizziness. She was barely eating or drinking so I brought her to stay with us. I asked my GP to pop out and see her and he doubled her Stemetil dose, and she seemed much better and was eating/drinking normally again for a few days. We really thought she was cured.

My DB & SIL came to stay with her over the weekend as we had booked a break away with friends. But while away we got a call from DB to say she was being admitted as her nausea and headaches were back and much worse.

She's had a CAT scan which revealed small secondary tumours in her brain, and she has a 2cm tumour in her lung which is the primary. Just feel absolutely devastated and so shocked to the core. We haven't had an official prognosis yet as we're waiting for the MDT to meet on Friday, but they have implied surgery isn't likely.

My lovely Mum is determined to stay upbeat and positive, but we both know there is very little hope of a happy ending. Bizarrely, now she is on strong steroids she feels far better than she has for weeks, and is eating fine and showered herself today etc. To look at her you wouldn't know anything was wrong.

Outwardly I'm being very positive, but inside I'm just in bits. I lost my Dad to lung cancer 22 years ago and I can't believe it's come back to haunt us again.

She's only 76 and only a month ago was shopping with me and having lunch. Looking back she has felt a bit under the weather since early summer, with bad headaches and numbness & tingling in her right shoulder and hand. She saw her GP several times who told her it was just old age and a trapped nerve in her neck. But it would have been the tumours. If it had been picked up months ago would her prognosis be different? We'll never know.

So sorry to hear that. It's absolutely horrible. I don't have any useful advice other than to say I know exactly how you're feeling. Do you live close to your mum?

It really is isn't it. Just horrible. My Mum lives nearby but I wanted her here with us for a little bit, at least until we get her prognosis. It's tricky though because we have so many steps everywhere and she's not confident on her feet anymore.

I've ordered some stuff which should make it easier, like a perching stool and shower chair though. Her own flat is on the ground floor and it's sheltered housing (but only minimal support) so physically she'd be better at home, but psychologically she'd be worse I think?

I'm so sorry you're going through it too. It is relentless once you find yourself on this bastard treadmill.

I joined this thread 25/10. We've now been told their is nothing more the medical profession can do for DF and he has been put on an end of life pathway. As he doesn't have cancer the palliative care nurse doesn't seem to know what to do. The Drs have withdrawn all treatment and have explained that they now just leave him to die and will only offer pain relief and sedation when needed, frankly it's brutal. My DSM wants to bring DF home to die can anybody give me any advice so I can broach the subject with the hospital this morning?

An update on DH's situation - he has had the lung removed today and his surgeon said it was such a complex case there were two senior consultants present, the tumour was almost filling his lung and was tightly wrapped around the aorta leaving just 1cm for the pulmonary artery. The tumour was stuck to the heart and it was borderline whether to operate or not, but they took the risk and went for it. He's in intensive care but is comfortable, hooked up to so many machines, but I'm so relieved that he made it through the op. We won't know if it has spread into the blood until more tests are carried out, when he's a bit better, but the worst of it is over and he has no more tumours.

Hi, just joining the club here. Ddad has been deteriorating for a couple of years now. Been in and out of hospital with chest infections, low oxygen levels etc.
He's in now and hasn't bounced back as normal, just sleeps all the while.
Anyway, scans this week have shown terminal lung cancer.
They're now talking about bringing him home, hospice nurses coming in etc.
Mum's still his primary carer at the moment.
I suppose it's my decision what to tell my girls, the eldest adores him and will be hit harder than her sister.
He's always been the one I was closer to- losing him is going to be so hard.

Gretchen, how's your DH doing?

Maggienolia - I'm so sorry.

My mum had a meeting with the consultant this evening and he said he thinks she's too weak for chemo. They'll wait a couple of weeks and make a decision then. She's had multiple infections and is very weak, so I am not hopeful.

I feel a bit numb about it. If they don't go ahead with chemo, they'll give her palliative care either at home or in the local hospital. I don't know what that means in terms of timescales.

to all facing difficult times right now - this time of year really does bring it home doesn't it.

My dear Dad passed away this evening (14th) - pancreatic cancer that had spread to his stomach. I count myself lucky that I, Mum and my brother were with him as he quietly left us, and that it was a comparatively swift departure given how this particular cancer can be. He'd been so strong and so 'well' that it's come as a shock even though we knew it would happen. My youngest DS has his birthday today (15th)... the next few days will be somewhat strange I guess.

Big hugs to all, and a wish for peace and opportunities to celebrate and remember the good times, to help carry us through the dark ones.

Morning frazzled. So sorry for your loss. It is such a dreadful time. We were in a similar position to you last year. DFIL died on fathers’ day which was the day before DS birthday. We got through it with lots of talking, good memories and honest feelings. The year before MIL died 2 days before Christmas. Equally difficult but the children coped admirably.
Thinking of all off you going through worrying and sad times.💐