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. :(

I really feel for anyone who is told the cancer is already advanced.Dad was advanced when diagnosed in his prostate and lymph nodes but at least he had 18 months in between chemo when he was well now its in his bladder and poss kidney and bones time is quite limited.Some people say awful things or unintentionally the wrong things.I really hope mums stage 4 ovarian type cancer isnt back this winter again as that will make life even harder.

All pretense at modesty has had to go out of the window here, Lucy. From the day that my sister and I went round and found dad in a confused state (due to being nearly in kidney failure from his tumour blocking him up) he's had my sister or I at every one of his appointments. Later his brother too when the appointments came thick and fast.

He's talked about his 'bits' in full and frank detail with us there and it is just how it is at the moment. No false shame. Some humour to keep things going. It's not the 'cancer', it's the 'pain in the arse' because it truly is on many levels.

It's hard to get your head round, Lucy, I agree. 4-5 years seems like a long time to me from what we've experienced. But then we found out in Nov that there was a blockage, in Jan that it was cancer, in May that the chemo wasn't working, in June that there was going to be no more chemo, no operation and that radio was only being offered to hopefully shrink things and to buy a bit more time. Dad asked for a prognosis and was told 'months'. When he fell apart, shocked, the consultant revised it to 'up to a year' but I don't know how honest that was. It's all felt like a bit of a rollercoaster. In his words "People keep giving me bad news. Where's the good news?"
He started a ten day course of radio in July and it was on the last day that he couldn't walk and had breaks in his pelvis that they said was because there was evidence of disease there.

Whatis, I hope your Mum stays well. One thing to deal with at a time is enough for anyone. My Mum is strong in a not-talking-about-it kind of a way and I worry for her as Dad's looked after her for most of her life. She's digging deep though and is showing how capable she can be.

In hindsight, we are very lucky to have had those 5 years. We just didn't realise it. At the time it didn't seem that big a deal. He wasn't sick. He didn't have radiotherapy. I'm not entirely sure he even had chemo. It was all done as day surgery and he had regular check ups and there was no sign of it. He's caught it pretty early so the prognosis was "this is manageable and shouldn't shorten your life".
Even when he went back in with symptoms he wasn't sick. And we thought it was just his kidney and didn't think it was related to the bladder. It wasn't until they found it in his bone that the extent of it became clear. So we went from thinking he was ok to really not in the space of a few weeks.
He still doesn't seem that sick. He is in pain, he sleeps a lot. But he is managing well. Makes it hard to comprehend that without treatment he would most likely be gone before the end of the year.

DH had cancer (in remission), SIL died of breast cancer last year, Dad now has terminal pancreatic cancer - the last 3 years have been constant hospital oncologist visits with various family members! It's been crap. Dad has had jaundice due to blockage and now very thin, but home and pretty stable after being sent from hospital to hospice for end of life care back in March! He's never been well enough for chemo or radiotherapy, not suitable for surgery, only continuing palliative care and so we take each day as it comes. Every extra day we have with him is a bonus. It's hard on us all working full time and trying to support each other and dad

That is so much to deal with all at once, Panga. I'm a bit lost for words.

Hi Lucy, hope the treatment gives your Dad extra time.

Whatis, glad you are feeling better, hopefully your work will be better when you go back.

Lu, like Charley said I feel for you having to be strong for your DH and kids, do you have any family close by who can help out with kids may give you some break from it even for a short while.

My dad was in hospital this week having a better chest drain put in procedure went well, unfortunately the meeting with the doctors did not go so well. If he carries on deteriorating at the rate he has it will be a few weeks instead of the few months we were told. Can't get my head round the fact that in the space of a couple of months he has gone from being fit and healthy, to being ill with what we thought was a bit of a virus to this.

Not sure how aware he is of it all still, whether it is a genuine lack of awareness, confusion due to morphine or a brave front.

Will hopefully visit again next weekend, going to get DH to sort the garden out for them and I am going to try take my Mum out for an hour or 2 to give her a break. Wish I still lived close to home, it is only about 1.5 hour drive away on a weekend but still to far just to pop in a couple of times a week.

Hi. I'm after a bit of advice Pls and if I've posted in the wrong place, sorry, but, could you point me in the right direction?

Name chanced as I don't know if my friend is on here or not.

A very good friend is dealing with a diagnosis of a life limiting illness in her child. For 2yrs I've seen the personal hell she is going through on a daily basis. The specialists are on top of everything to do with the needs of the child, but, my friend is far from coping. She has had counselling, but, is unable to cope at all with the reality the illness will eventually bring. Recently she called me and asked me to promise that if the inevitable happens, that I will lways look out for and be there for her other children. She has indicated that she would not be able to go on living while her sick child goes on alone . Of course I promised I would. I felt I had no choice. I also knew it was what she really needed/wanted to hear and ever since then she is coping a lot better. Almost as if now everything is in place and she has said what needed to be said, she can continue dealing with everything calmly. I think she has been panicking for so long about all of this and now she's got it off her chest she can deal. Since that chat it's as if a huge weight has been lifted off her shoulder.
I know for sure she is not suicidal, she even told me this and I truly believe her. But at the same time I know she will try and carry out her plan if the day comes her child is no longer here. She doesn't want the child to go alone.
How long has the child got? How long is a piece of string? It could be 20yrs or less, or more, who knows. For now things are calm and the child's health is stable.

What, if anything, can I do to support her?

Sorry for being a bit cryptic, I don't want to give too much details on a public forum.

Prizeplum that is an incredibly tough situation for you and your friend.

Is she still having counselling, if not perhaps suggest that she returns. If her childs illness does deteriorate then you may need to speak to one of the childs care givers to voice your concerns so they can arrange the support your friend will need.

Sorry that I am unable to give better advice, you sound like a very caring good friend though and that support must mean so much to her.

Prizeplum, is your friend in contact with the local Childrens hospice? if her child's illness is life limiting the health professionals can refer her. She can go there with the whole family and she and also her other children will get help to face the inevitable but also to have fun times and build lovely memories. They may also have a mums group where she can meet up with other mums in the same situation. You sound a very caring friend.

Prizeplum, you are doing an awful lot just by being the person that your friend can talk to in this situation and to be so honest with. I hope she can continue to access support through other channels too.

Don't read on if squeamish.
My Dad is majorly pissed off with his hospital today. He's had a bit of an episode at the weekend. Basically, he's been complaining that his tumour (in his bladder and of a considerable size in the words of his consultant) has been growing and was an uncomfortable lump in his perineal area that he was having to sit on. This gave him pain so he's bought special cushions and has been putting up with being uncomfortable for some time. They offered radiotherapy and he complained it was worse. Bigger and tight. (I said that all shame had gone out of the window when he's been having to discuss this in front of us all.)

Basically, this weekend, something burst and they are guessing that it may have been a cyst in the area, or an abcess caused by the radiotherapy. He's feeling cross that if he'd been listened to about his discomfort all this time they may have been able to treat it before it sorted itself out in rather a distressing way (he had no idea what was happening when it went). And lacking in confidence with their care as he's been saying this big swelling was there and been 'ignored'. And perplexed as to what exactly going on in that area if it wasn't the tumour he was sitting on all this time.

The only positive is that he's far more comfortable now than he's been in a long time as the swelling has gone down and he can sit better now for the first time in months.

He (with his brother for company and a second ear to hear all the details) is going to see his consultant tomorrow to ask some very pointed questions.

Hi everyone, its taken a while for me to get through a the updates! Will respond properly later but Dad starts a new round of chemo today to try and keep going a bit longer. This was in doubt last week as his white blood cell count was too low but steroids have managed to improve this. There's no guarantee this will have an effect, and they are only going to try a limited course and then assess but it seems to be a small step in the right direction. As I thought my sister has gone into panic mode and already started clearing a lot of my dads house out (my dad has asked her to) and my offers of help and pleas for her to wait are just being ignored so I have a battle on my hands. I'm seeing them this weekend so will cross that bridge when I come to it!

I hope your dad's chemo goes well Nouser and gives you more time with him.

Charley, I hope you get some answers about what that was, sounds like a horrible thing for your dad to go through.

My dad had his first chemo session yesterday. He is positively bouncing round the house today! We're thinking maybe the steroids he got have given him a boost? His leg is a lot less sore and he is a lot more mobile.

Nouser, fingers crossed your Dad's chemo goes well. We've had to go a lot of sorting of our Dad's house at his request. It was hard to do, but he was glad when it was done.

Lucy, hurray for the steroid boost if that's what it was. Apart from a few aches and pains and losing his hair, my Dad sailed through chemo.

Dad did get a few answers yesterday. Aparently, it was a tumour that was nuked by the radiotherapy and died leaving a cyst/abcess behind. It's great that it's gone and it gives him more comfort. It's a bit worrying that it was a secondary tumour though. I can't help thinking that if that had grown there and to such a size, where else could another be growing? It doesn't help to think like that though so I try not to.

Your poor dad Charley that sounds so painful for him.

Lucy, that actually made me smile to think of your dad bouncing around the house on a steriod high. I think it is good to see our loved ones on good days.

Hope your dad's chemo went well Nouser.

Things still progressing quickly for my dad, he had a hospital bed delivered yesterday all I can hope for now is that we get the few months and not the worst case prognosis of a few weeks. I don't want to see him suffer but I am not ready, still reeling over his diagnosis and can't face the next step yet.

groovejet i am so pleased your Dad has got a hospital bed at home...this is my dads plan when the time comes.Dad has been out and about while ive been working.Mum sounded down as i dont think they do too much and she must be feeling it after all of his birthday wishes last week(he had 50 facebook wishes and call from his brother abroad.Dad didnt want a fuss and tried hard not to dwell on it but he had a bbq at my brothers with a cake then came home to more of his family and grandchildren and more cake ha ha.I made him one too and we ate it here.
Charley davidson sorry your dad has had such a rough time and im pleased he has his answers.Also sorting out his house would ve been a relief for him.Nouser i hope your dad is ok after chemo as symptoms can take a few days to kick in.Love to all.:)

Dad seems pleased with his bed, my mum even gave it a a go and said she had fun trying out all the options, they both sounded in good spirits.

Didn't visit this weekend it has been such a hectic week for them with so many appointments and visits they wanted a weekend to themselves.

Going next weekend, which will be my dd2's birthday so we are having her birthday tea with them, my mum thinks the promise of birthday cake will tempt my dad to eat. He is pretty much on milkshake meals now but his sweet tooth still wins out.

How is work now you have gone back Whatis? Hope they are being a little but more understanding.

The birthday tea sounds like good fun. I hope your Dad enjoys it, groove and that it leaves you with happy memories of the day. We took my Dad out for breakfast this week. His little drama of the secondary tumour going has meant he can (for now) sit comfortably. So we've grabbed the moment and my sister and I are tempting him with different things. This week it was breakfast out. Next week it's lunch at a Pub restaurant he's wanted to try for a while - the whole family are going.

Is it morbid to keep thinking about switching on my voice recorder on my phone while we are there, to capture his voice to listen to in the future? (I think it might be, a bit.)

charley i wouldnt let dh delete my dads voice off our answer machine.Groovejet i thought the women at my work sounded quite concerned about Dad however my manager yawned twice while i told him the gist of last week(he did apologise however he can be a pig and has been reported for his behaviour the head office).

Just marking my place because I think I'm going to need you all. Dh diagnosed with lymphoma last night. My mind is racing and I can't think straight

Guymartinsideburns i read your thread and im so sorry that you Dh has been diagnosed.My only experience is Mum stage 4 cancer diagnosed aug 2007 ( currently in a kind of remission with incurable cancer) Dad diagnosed with advanced cancer while Mum was on chemo too in 2012 currently at the end of life phase.
You are probably in shock right now tbh.I remember wandering around the shops in a daze hardly able to take the news in which is harder for you as it is your DH.Look after yourself.The shock will wear off a bit and you will feel more in control when a treatment plan is in place for your dh.
Also there is a great chatroom and forums for carers like yourself on macmillan if and when you want to chat to others who know how you feel.

I'm so sorry that so many are going through this. Until my mum's terminal diagnosis 3 years ago I really had no clue what it is like day in day out for months and years. You are always on the rollercoaster and just can't get off even when in a calm spell. For colleagues and friends who haven't experienced it I give a pass for their lapses, I was probably the same once.

Fairly soon after Mum died (nursed at home, bed-bound for months, by Dad and me) my Dad got his late stage diagnosis. He's outlived all expectations this year but I am struggling with it all. My DH and young adult children are a great support but having moved our lives around totally to be there for Dad I am in limbo. Which sounds like I want this over but of course that is the last thing I want.

Dad only has me, he wants to die at home which I am facilitating. This is so hard.

Thank you whatis. It's so awful that so many people are having to go through this. I will definitely look at those chat rooms you mention when I feel a bit more stable. Right now I find myself reading a bit of information about it, then backing off..... Then reading a bit more later on. I guess I'm trying to process things gently.

My thoughts are with everyone, this is so hard xx

nemno i am so sorry you had this experience twice too.It is so hard sometimes isnt it ?Sometimes i agree about colleagues other times they just said rude things i wouldnt repeat as they dont have a clue.
I ve kind of been where you are with Dad.He gets really ill then bounces back it is so hard to know what to think.I ve even put off getting another job as i dont want to start somewhere then be on compassionate leave.
Cancer is such a rollercoaster ride even from the outside.

Thank you whatis. I am shocked and so sorry that people are actually rude to you .

to everyone in fact. Perhaps would be better, Mum got sick of the sight and smell of flowers when she was diagnosed/in bed but people just didn't know what to do or say so sent flowers. Dad hasn't had any!

Guymartin am so sorry to hear about your DH.

Nemno, sorry that you have to go through this again with your dad.

With regards to work I can forgive lapses or people who just clearly don't know what to say, but downright rudeness I don't understand.

Charley, I don't think recording your dad is morbid at all, and even if it is then I think being slightly morbid at times is to be expected we have to make the most of the moments we have and make sure memories are preserved where possible.