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.

Anyone else wish they could get off the Cancer train?

Moggiington
Posted by

Hi there, 

sorry to read it’s been a rough few weeks...I know why you post here, I do the same when it’s tough and it does help...you’ll remember the depths of despair I was feeling for my poor dad...well since then, he’s had pneumonia and heart failure...but unbelievably, seems to be coming through it...he’s on oxygen now due to low pressure, and will remain so..but they are actually now planning to send him home next week! We are delighted...but at the same time it strikes me how much you lower your benchmark of what is something you’re happy about with this god awful disease...we’re now hoping he’s happy to be in a bed in his own house, able to look out on the garden, feel the breeze when we open the french doors, listen to music, watch tv.. and be out of that god awful hospital cell. It’s only 4 months since he was still driving his car x 

love be to you and yours

ChrisM5498
Posted by

Hi Moggington, 

That's looking really positive for you! Hope that it continues and he gets home really soon. I know what you mean with the hospital cells, I just spend the whole time there wanting to get my mum out and back home. Fingers crossed for you that his recovery continues and you get him home. My week has been very quiet for once. Nothing happening, Mum is stable and the meds seem to be balancing out the horrible chemo effects of last week. We took advantage of the hot weather and had a mini camping trip this weekend, and it was really good to unwind - the canoeing pub crawl round the Norfolk Broads was a fantastic way to spend an afternoon, although I could have done without the mossie bites! 

Now getting a week of work in before taking the kids to see her for a week next week. I've set a load of milestones with good things to aim at, and this is the first one and we're nearly there.

All the best and hope the recovery continues.

C

Moggiington
Posted by

Hi C

when they discharged dad they told him us most we could expect was 3 months. He came home Monday..tonight I’m here..a Doctor and district nurse have now told us we are in the final phase and dad has possibly hours left. He’s pain free, and calm.  We’re all here, playing his favourite music. The biggest issue is the breathing..we bought a nebuliser and that’s helping, he’s not distressed.. 

Moggiington
Posted by

Dad died at 230am 28/7/19. At peace now after a terrible journey.  

Vulpes
Posted by

I am so sorry for your loss Moggiington. Wishing you strength xxx

Moggiington
Posted by

Thank you.. after how terrible it’s been for dad, I thought I’d feel a sense of relief but I’m just devastated. I keep seeing him as he was in the final hours. I’m hoping the passage of time will help x

ChrisM5498
Posted by

Oh damn Moggiington so sorry for your loss, so, so sorry.

love to you and yours.

Not really much I can say, as words just aren’t enough right now.

Sending hugs and much love

C

Moggiington
Posted by

Thanks C. It’s now almost 48 hours since..we came up Saturday to do some DIY..didn’t expect Dad to go..my just 13 year old son was with me, so it’s been worrying me that he saw dad so ill and was there in the house when he died. He wasn’t with us at the time, but came down shortly after so saw him.  Fortunately he seems ok with it. My husband took him home yesterday and today has been about supporting mum, getting the death notice from the Dr, getting to the register office, taking to the DWP, starting probate etc. I’m now panicking about her financial position as I’ve realised how much of her income disappears and her council tax is huge! I don’t think she realises what she’s facing..this morning was strange..I woke at 445 and couldn’t stop crying, but this evening I’m feeling stronger. I almost can’t believe what happened 2 days ago. I have to say, the District nurses, the GP and the carers were phenomenal..we pretty much had a district nurse with us all day Saturday then every 2 hours or so through the evening and night. The strange thing was, the day before, his GP came out, and told mum she was sending some medication top ups round later in the day. My mum then told me she couldn’t understand why there were loads of vials of drugs in the delivery..we found out during dad’s last hours as the district nurses used them during that time. Clearly the GP knew it was imminent the day before and prepared the house so everything was there. The next day, Saturday, a district nurse turned up unexpectedly, and that was the start. They really were quite outstanding.  

Anyway, not sure how I feel now..but I think I feel like I’m off the train, but sad. Now trying to help mum for life without him, and thinking of living my life without him there. I miss him already x

ChrisM5498
Posted by

Hi Moggington

Digging deep into my brain folder marked “i’ll Deal with this later” I don’t know if it will help or not but I hope so. We lost my dad in 94, he was your typical old school bloke who didn’t do doctors because it’s not that bad. By the time he even saw a doctor he was stage 4 terminal, no treatment, straight on palliative. Looking back it was a blur of hospitals, district nurses and eventually the hospice. At the time I was a very young squaddie just back from Bosnia, so fairly messed up already. But - and this is a massive but - now I look back on those times spent with my dad as so, so precious. Even with all the whirlwind of trauma that was going on then. Every minute was priceless. I do apologise if this sounds ultra-corny but I never felt more close to my dad than I did at the end. I still miss him, but he’s still with me, even now. There will be really crap days when something happens and you think “I wish dad had seen that” and it will hurt like ****,but there will be days when you think the same and you’ll smile. I wish he’d met my kids, I wish he’d been at my wedding, I hope he’s looking down from wherever and thinking I did ok. These feelings are forever, and they should be forever. Your dad was priceless to you, and he always will be. And believe me that even now after 25 years, I still feel him walking with me, when I get a moment to stop, he is always here, and I cherish that. Afterwards it all became normal, my new normal.

Things will get better. You won’t forget and it will always hurt, but that’s ok. Your dad will always, ALWAYS be with you, because he is part of you  and always will be.

Ok, more practical stuff - with my dad probate wasn’t even required, not sure if that’s changed now. Council tax should reduce if your mum is now a single occupant, plus if her income has dropped she may get benefit to reduce it further. 

The painful memories will be battered by the happy ones. They won’t go away, but the happier times will shine brighter eventually. 

I hope I haven’t caused offence with that babble, if so I really didn’t intend to.

much love

C

Moggiington
Posted by

Hi c

thank you so much for sharing your story..that really does help. I can’t believe you went through all that now have your poor mum suffering cancer also. Life can be so cruel. As for your advice on the practicalities, you’re spot on. It’s been a whirlwind but I hit it yesterday and sorted all I could.  No probate required, so now just waiting for a few forms to come back, then I’ll be on the pensions calculator to make sure she gets any financial help she’s entitled to.  I’ve even been able to get the car reregistered and taxed. My dad was a very practical man who did everything ‘official’ for the house, so I definitely think he has been helping me these last 2 says. He was also someone who loved his holidays and I was upset also as my family holiday abroad a week tomorrow, I thought I’d just lose my money on (and it’s a fair bit!) but unbelievably, we’ve been able to sort his funeral for next Monday, so I can say goodbye then 2 days later, go off for some much needed R & R on the beach. 

Love to you and yours on the rest of your journey - I can’t tell you how much it’s helped to talk to someone else going through this. Thank you. 

And finally.. a very weird story...on Monday morning, I woke up and I had been dreaming I had got on a packed bus, gone upstairs to the back, and the bus was driving far too fast and hurtling towards a snake in the road, whilst I struggled to get to a seat, and shouted about the speed.  Now awake, I went in to check on mum, and see if she was awake. She woke as I was there and said, ‘oh I was having a weird dream.. I was on a tram and it was going too fast with the driver hurtling towards a bend’... totally weird when I consider the name of this thread.  I think it was our minds telling us we now had to take control of the journey. 

All the very best, 

Caroline 

ChrisM5498
Posted by

Hi Caroline

Now back from spending 10 days at Mum's with the kids. They've had a good time, been very hard work keeping things going, but they got some priceless quality time with her. The bus is still heading onwards, but am taking a step back as my sister is stepping up for the next four weeks.

Hope you managed to get everything sorted and you managed to get away on holiday. After all that's gone on over the last few weeks you need a rest, so hope you manage to do so. We are away next week (and completely guilt-riddled about going) for some much needed down time, which I'm glad we booked now (mum pushed us into booking it), as my poor other half has had to keep the rest of our lives going while I've been dashing backwards and forwards to appointments, so it's good that we get some time together and that she also gets to relax as well. 

So maybe I could consider that as getting off the bus for a short time, before it all starts again.

Love to you and yours

C

Messymum
Posted by