Gill,
This made me smile too. It really is those things that get you eh? I heard an elderly man cursing at one of those self service checkouts yesterday. I had to turn round at look because he sounded so much like my dad. It wasn't.
Tanya
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Hi Jo,
I don't really understand the numbers as there are so many variations of this nasty Myeloma, I guess what I do know is numbers going up isn't a good thing. But I what I do know is the distance. And the age of your dad. My dad lived a good 2.5hrs from me which also meant leaving behind my three young children and husband to be with him. It's hard when there are so many appointments that sometimes seem not to shed much light and you feel responsible for being there to understand it for them and also try to understand it all for yourself.
I hope the next line of treatment they offer your dad is better tolerated by him as it sounds like he had a rough time last time.
PM me if you want to chat as I know how hard it can be.
Tanya
I breaks my heart to write that my dad passed away yesterday afternoon at 5pm very, very peacefully.
I am extremely fortunate to have enough support from my wonderful husband and mother in law who enabled me to get away so I could sleep in his room with him for his last night here and hold his hand as he left.
Thank you for all your support.
Tanya
So here I am less than four weeks on from my original post of frustration and now I find myself realising it was all part of Dad's journey of coming to terms with the inevitable. After my message i had an apology from him about his behaviour, something I know was extremely difficult for him to vocalise. We (my husband and I) went with him to his haematology appointment and the fracture clinic appointment. Haematology confirmed their decision to suspend treatment and gave him until 17th April for his body to rally before starting on Rev. They also wanted him to meet with the Radiotherapist to explore the possibility of radiotherapy on his broken arm. The fracture clinic confirmed this was an acceptable option and surgery wasn't required. Afterwards I finally sorted his LPA and had his will witnessed.
He sent me flowers, never before has my father sent me flowers. He instructed me to buy presents for the children and beer for my husband. And to talk to my mum more. (That is another whole new childhood trauma!!).
He attended his appointment with radiotherapy the following week and they planned to do 5 days radiotherapy.
On Tuesday of last week an ambulance was called by his carers as he was refusing to eat. The hospital were less than helpful over the phone and I just assumed it was the usual anaemia or hypercalcemia. On Thursday they actually called me (always wondered at what point next of kin was called) and I was advised that there was nothing more they could do for him in terms of the MM as he had pnuemonia, hypercalcemia and chronic kidney failure and was made aware of a DNR.
The terminology was imminent, days, hours, very poorly, comfortable. We arranged childcare and got to the hospital within four hours. It's a 260 mile round trip. He has exceeded all expectations. They didn't think he was going to survive the first 24hrs then, the weekend and now it's Thursday. Now we are desperately trying to get him into a hospice for his final days. (He hates being in East Surrey Hospital!) He isn't really with us any more but is still aware of who I am. I haven't seen him today but his pain meds are now pump driven to make sure he gets the full benefit as swallowing is difficult. He seems very comfortable now. When he is able to talk he talks about going home and his passport mostly. He knows he needs to continue his journey but is still fighting on. It breaks my heart to see my dad so tired, none of the alcoholism matters now, all he ever was was a little cranky and sometimes not the rock I imagine the perfect dad would be but as I reflect, I realise that now he isn't there to call on, that actually he was there, more than I perhaps realised. And for that I thank him.
I guess you'll find my over in the end of life board now. I'll probably post this there too.
Tanya
Thanks Tom,
You truly are inspirational in the way you talk about Myeloma and support other users on this forum. I spoke to Dad this evening and he was ok. Yesterday was just a really bad day what with one thing and another so I guess he chose to take it out on those closest. Sorry your upbringing wasn't a straightforward one either. But here we both are on the other side making sure history doesn't repeat it's self 😉
I guess depression is par for the course with the journey dad is on. Let's hope those free light chain numbers are in tomorrow so we can see what's in store for dad.
Take care,
Tanya
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Hi Vicki and Colin,
Thanks for your reply. I guess the problem is alcohol. It has destroyed his life, lost his first family when they were young as his wife left and took kids. My mum met him when he was pretty injured after a car crash, then my mum left him and took me when I was little. Numerous drink driving bans. I tried to talk to him when I was a teen. He has advice for all his friends in similar situations but doesn't see it as a problem he has. I'm now 38 and a mother of three (4,3 &1yrs) and last week I told him that I could not bring the children as its my duty as a parent not to put them in an environment where there is alcohol abuse. That was tough for both of us but did some good for a few days.
Anyway I digress (sorry), he refuses hospital due to no tv and probably no alcohol. Yet again the dreaded 'A' word comes up! They have stopped the velcade as its clear its doing more harm than good, been anaemic, neutropenic, passed out, broken shoulder with fall, PN. Basically if the kappa free light chain results are good they'll probably continue with it but the general impression consultant gave was after such a break from it (2 wks) he shouldn't be feeling this bad still. It's tough.
He's always had a temper and just drinks, was never violent to me but I guess hurtful and selfish. Things I have only realised since being a parent myself. In my eyes he is and always will be my dad (Ron) despite his flaws.
Thanks for listening to me vent.
Tanya
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Hi Bridget,
Can I ask you what other pain relief might be available? The tablets do control it so I think that's why they haven't offered him anything else. It does come and go too. I'm going to call his Macmillan nurse after his appointment as he just zones out when the Drs talk to him. They use so much jargon, I always stop them and get them to explain what they mean and then repeat it back to them so I know I understand it fully. I then re explain it to dad. However, he may fair better on monday if I'm not there and listen as he'll have to because I won't be there to listen for him.
Thanks for asking after my girl, she's back to her normal chatty self today. Kids are so resilient aren't they?
Tanya
Thanks for the advice. I think I've underestimated him and he seems to be on top of it all. However, there are side effects. He has three of the big four of thalidomide except dvt (touch wood). So they are seeing him again on Monday. That's the second visit since he started treatment. I can't make that one so he's going on his own with hospital transport. Just as well as my daughter has a tummy bug so wouldn't have been able to see him anyway. Anyway they are also concerned about a falling red blood cell count and platelet count so checking on that too. I guess the worst thing at the moment is his pain. But they just keep telling him to take codeine and morphine to keep that under control. They are trying to get funding for the iv bisphosphorate so that may help with the pain.
Well that's the most recent update, hope everyone is doing ok today?
Tanya
Thanks everyone for your wishes and support.
I'll update you all on yesterdays events.
We had bloods and then went in to see the consultant. He confirmed MM which we knew but I guess they had to tick all their boxes before committing. They have started him on CTD. It took nearly 3 hours to fill the prescription! It's a lot of pills eh? I helped create a chart with his keyworker/macmillan nurse. She taught him how to inject the clexane (initially he did squirt it all over her :-D). And all in all he seems confident he can stay on top of it all. I have a copy of his schedule so will check with him over the phone.
So I guess we'll see how he responds to it all. To be fair I think once you know what you are doing and have come to terms with it as a patient and a relative you just get on with it and take it day by day. Good days and bad days. I know that when Dad is upbeat it makes me feel better. And I'm sure that works the other way too.
He does seems in less pain thanks to the morphine.
The other thing was my half sister who is actually 18 years older than me. I can't bring myself to ask her to help. She had to deal with her father's dad when he was poorly, our mum's parents (mum didn't/wouldn't do it) and last year she had a terrible time with her dad being poorly (now well), plus ongoing care of her father-in-law following a nasty fall with broken hip. Then he had a stroke and just before Christmas he had to go into a nursing home. She is completely spent in that department. I may call on her to have my kids for the odd afternoon while I go to dads appointments. That way she'll be helping without having to go to another hospital.
Can I ask if those of you with MM always have someone go with you to the hospital? I suppose it's a personal choice but is it sometimes a good thing to go on your own so you can ask questions that you feel you can't ask in front of a loved one? I know my dad doesn't like seeing me upset, or me seeing him upset. Maybe I should just ask him myself?
Tanya
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Hi Em,
My dad was also confirmed with MM yesterday too. It's hard to watch isn't it? My dad started all his tablets today, he lives alone so constantly worried about him. As Mavis said being in hospital is good in a way as he is right under their noses.
I hope he's responded better today.
Keep us posted.
Tanya
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