Supporting someone with incurable cancer

For carers, friends and families of people with a terminal diagnosis to discuss their emotions about the prospect of losing their loved ones, as well as practical issues about palliative care and end of life.

Too hard to talk about??

Rachel G
Posted by

I am a member of 4 groups here - the first I joined when first looking after my mum after her cancer diagnosis.

This is the last group I joined after my partner of 5 years (aged 58) was diagnosed with incurable lung cancer in February this year.

I have seen lots of people join this group but very few post. 

Is there anything worse than looking after someone who you know cant be cured?

All those well meaning visitors who say "When you get better we should do......"

All those people who havent been in touch for years but suddenly come out of the woodwork.....

And you. You have to put on the brave face. Maybe lie - to your loved one or others - yes of course its looking good/ he or she is doing well ... when the truth is you see them fading  before your eyes.

Being diagnosed with an incurable illness has to be the worst thing ever. Being the one who cares for that person comes a very close second.

I cry my tears in private. 

Anyone here the same?

R x

Rachel

panic
Posted by

Hi Rachel G,

Anyone here the same?

Sadly, probably everyone, at varying times.

Cancer is an insidious bastard that acts like a teenager, demanding to be the centre of attention. It can make you feel like your best is never good enough (and sometimes the patient will adopt this mentality as well).

When things like this are getting on top of me, I take 10 minutes before I go to bed and write down all the things I have done that day to provide care - even the little things. The longer the list - the better I feel.

All those people who havent been in touch for years but suddenly come out of the woodwork.....

Pay them no mind. They will revert to type and crawl back into their respective holes. The ones that don't are the rarest type of friend that don't need to live in your pockets but truly have your best interests at heart.

And you. You have to put on the brave face. Maybe lie - to your loved one or others - yes of course its looking good/ he or she is doing well ... when the truth is you see them fading  before your eyes.

Why lie? The truth will out in the end and then you'll be the bad guy for hiding things. Honesty, as uncomfortable as it is, is the best policy. Even our grandchildren (aged from 8 to 13) have been told the truth. The edges of that truth may have been softened for the kids, but the truth is undeniable.

I cry my tears in private. 

As, most likely, your partner does. Cancer is a mongrel that will try and create a wall between the two of you. You two are the only ones that really matter in this fight. Don't let cancer drive a wedge between the two of you. Talk to him and let him know how you are feeling.

Peace,
Ewen :-)

P.S. I noticed in your profile, you said your partner is betting bone strengthening injections. It is really important that his vitamin D levels are maintained as this vitamin is crucial to the uptake of calcium from the blood into the bones. 5-10 minutes a day in the sunlight is sufficient, but if he can't manage this, check with your doctors about adding a Vitamin D supplement to his meds regime. In Australia, there are vitamin D supplements that also include a dose of calcium.

The day after your journey ends, the sun will still rise.
As will you.
puddle fish
Posted by

Yes very much the same, I know lots of places I can cry in private if need be. Also where to stop the car on the journey to and fro the hospice.

I find myself caught in the middle he doesn't always want people to know the severity. Or others just don't get it. My standard response has been he's comfortable and being well looked after. All of which is true.

Then when they say any news on him coming home god thats so hard to hear I just say he's in the best place at the moment for symptom management.  That's a phrase I borrowed off a close friend who helped me accept he had gone into a hospice. 

When you get better yep that along  with you've got to fight it you can't give in. He's not fighting he's not given in he's accepted it's a battle he can't win but he's living with it on his terms. 

lthenderson
Posted by

We've all been there and I still have my days six months after losing my mother. Today I went back to her house to look after things and had a crying spell in the living room. It just felt very hard to be somewhere where my mother's presence was everywhere and yet she is gone never to come back. 

Is there anything worse than looking after someone who you know cant be cured?

I think many of my friends had it worse when their loved one died suddenly. I had two and a half years after knowing my mother was dying to make memories with her that I will now carry with me the rest of my life. I had two and a half years to say goodbye every single day and to give her a hug every single day. Yes, there are worse things than this. 

All those well meaning visitors who say "When you get better we should do......"

The bright side to them saying such things is that it kept my mother optimistic until the very last month of her life. When she was optimistic, she was happy and out doing things, making memories with my kids, etc. The days when my mother was lowest, were the days when she would have a doctor telling her that this tumor would eventually kill her, which indeed it did eventually. But she lived for two and a half years with a terminal diagnosis and most of that two and a half years was some of the best years we've ever had. Optimism is a very powerful tool.

All those people who havent been in touch for years but suddenly come out of the woodwork.....

Funny thing, some of those people who came out of the woodwork, really helped out during those last weeks and even in the months since.  Some of those people who came out of the woodwork helped me raise money for cancer research here a month ago. 

I too have been honest and upfront about the entire thing, even to my children. They knew that Grandma was going to die a lot sooner than expected and that we must not waste a single day that we had together. When people asked me how she was doing, I told them the truth, that she was slowly losing the battle but was still fighting it every step of the way. 

This is a terrible disease for sure. I've had dark times a plenty over the last three years. But I look back at all those good memories we made between the initial terminal diagnosis, her death and those I find myself telling others. A friend of mine lost both his parents in a head on car collision in the blink of an eye. Yes, there are worse things than knowing your loved one may die of cancer sometime in the future.

Best wishes

Vulpes
Posted by

Yes

 but you already had a whole lifetime with your mother. My husband isnt going to die of cancer ‘sometime’ in the future, some hypothetical thing that’s going to happen that I don’t have to think about to closely.

he is going to die soon. I can’t stop it.

and I ALREADY cherished every moment with him. He didn’t need to get cancer for me to suddenly think, oh heck actually I quite like him. I have never wasted ANY of my days with him. 

Im sure it was not your intention but I have found your post increadibly upsetting

there is nothing, NOTHING worse to me, than having to watch my husband die.

Rachel G
Posted by

Dear Vulpes

I am so sorry to upset you - it wasnt my intention. It was more me venting. I certainly didnt mean to imply that anyone doesnt love or cherish their loved one

A lot has changed since I posted. And my "soon" maybe as soon as this weekend. It puts everything into perspective .

I hope you have a bit more time with your husband

and once again Im sorry

Rachel

Vulpes
Posted by

That is so lovely of you to apologise, I actually logged back in to see if I could delete my post as I felt so bad about responding rudely! Please also accept my apology

Moggiington
Posted by

Hi, 

my dad has advanced renal cancer that’s gone to his bones and is currently in hospital, unable to move, unable to stand or walk. I think this last 9 months, he hasn’t been home for more than a 3 week block..every time we hope he’s going to have a period of calm and stability, but this god awful disease and the side effects of the treatment seem to have an array of horrible changes to throw at him, creating this constant cycle of hospitals, hospices, and now carers etc. So I just wanted to say, I totally get what you’re saying. I often think it can’t get any worse, and then it does. 

Thinking of you, your husband and all of us living this nightmare.