[dee4894Participant]

Hi Rachael,
My dad is doing okay. By okay I mean he's alive and his kidneys are stable at around 15% again (I think, anyway). He said "a bit rough, I suppose the word would be. Tired, I'm just permanently tired, which more likely means I need a transfusion. It's not very nice"
But yeah, we're all doing okay I think. 🙂
How about you and your mum?
Lots of love.
– Dee.

[dee4894Participant]

Hey 🙂
Thank you, that still helpful. He's not being sick at the moment, unsure as to why he was being sick anyway but hopefully he'll stop feeling queezy soon.
I don't know how to make him feel better because I obviously have no idea how he is feeling, or in fact anything about this cancer, really. He knows that we all care about him and stuff. I don't really know what else to say.
– Dee.

[dee4894Participant]

That's a good idea.. I didn't even think of that.
Thank you.
– Dee.

[dee4894Participant]

So uh. Yeah. Things aren't looking good.
My dad has only had three sessions of chemo; his kidneys went down to 13%, which was a drop of 7% since last checked and he was sent back home at 15% – which was two days ago. He's being sick etc, and so he now isn't drinking again, because who wants to drink when they're being sick?
This morning we cried together because he doesn't think he's going to last very long. He thinks the chemo isn't helping and only making him worse, that his body is rejecting it. He has to have dialysis which he doesn't really want. If he decides to have it, he would be traveling every day to have line drains, bloods and dialysis. Also he can't have chemo while on dialysis. I am pretty sure he's giving up.
He sees people walk in and out of the cancer ward, seeming perfectly fine and even drive themselves home. The fact that they can move so easily makes him sad because he can't.
I don't really know what to do. I'm not going to tell him that everything will be okay and that he'll get better, because I can't if I don't believe it myself. Things are far too bad for me to be able to be positive.
I thought I'd update. Plus, I just wanted to know if anybody else here has had kidneys that far failing and they've got a load better?
Thanks <3
– Dee.

[dee4894Participant]

Hi Helen,
Really happy for you being much better. How come you're cross though?
Oh, and also, were you less mobile and things at first? Because my dad is, and that's what makes him the most angry. He has tonnes of orchids etc – a large, packed greenhouse full of them, as well as our entire kitchen window sill. I've had to take over looking after them because he can't lift things or stretch to do anything. He says he'd be much happier if he could do more.
– Dee

[dee4894Participant]

Thank you!
He went in for a picc line flush and asked then, they confirmed what you said. He's pretty down about that because he expected it to be over quickly. Which I guess was daft. He is having 4 cycles. Is that because he's older or the illness is worse or.. I dunno.. It seems many have more, as if their body has more to give? *shrug*
We're all okay though, considering.
Also a possible symptom that he has.. He has no feeling in his left little finger/side of hand. Doc and physio said it could be either nerve or cancer related? I dunno. I just thought I'd ask.
Thanks! Hope you are all well and in good spirits and what not.
– Dee

[dee4894Participant]

Hiiiiii…
We're a little confused about chemo cycles. Is 1 cycle 3-4 weeks? Like.. My dad is having chemo once a week, and he thinks that after 4 weeks, that's 4 cycles? Or is one cycle 4 months? So. 16 sessions? I don't know.
Thanks in advance.
Also thanks for the messages. 😀
– Dee

[dee4894Participant]

Yay 🙂
Dad is home – hopefully for a while now.
They have his pain and sickness under control and he is now able to move a little, as well as eat.
This makes me stupidly happy.
🙂
– Dee

[dee4894Participant]

Hi Alison 🙂
Thank you and good luck to your mum, I hope she continues to be well.
Yeah, I knew I should join a forum type thing because then it's real people rather than statistics and stuff.

—–

Everyone,
Thank you to all of you, everything you say is so sweet and I am so grateful. Please don't be disheartened if it takes me a while to reply or I only send a short one, as I find it difficult to think of lots to say except thank you, etc. I don't feel like it's quite enough but hopefully you understand.
I tell my dad all the lovely things you say and it seems to give him some hope about the future. So thank you again. I truely wish you all the best.
Lots of love.
– Dee

[dee4894Participant]

Hi Vicki 🙂
Thank you. Of course I'd still love my dad even if he did lose his hair but it would just make this all more real, since it's all happened so soon and it hasn't sunk in, and I don't know if it ever truely will.
Though, we found out yesterday the treatment he is having with side effects etc and prognosis. Though I think it was just average. The chemo drug is Bortezomib (velcade) and he's taking steroids too. It starts on monday and then he'll be discharged I think. That drug means he won't lose his hair, it's not even a posibility because the Dr or Registrar (sorry, I don't know) didn't even tick it. Prognosis without drugs is 1-2 years, and with is average of 5. I think that's average, right?
Also, I'm 17 and 18 in early August.
– Dee

[dee4894Participant]

Hi Tom 🙂
That made me smile! I'm really happy for you. I hope you can continue as well as you are now.
Thank you for the kind words. They're all really appreciated. It's so good having people being supportive to help soften the blow of all this.
– Dee

[dee4894Participant]

Oh wow, I had no idea there were different types of it.. Though the doctors didn't really tell us anything so it's obvious that we won't know anything.
My dad would have to go to a hospital in Canterbury if his kidneys dropped below 20%, or something. I don't know if there are more than one but, yeah. Heard about Kings. That's where they sent his bone marrow sample to I think. Also I over heard a family saying how awful Medway hospital was and how they were going to get in contact with Kings and find better doctors etc. Which, I guess is fair enough.
That's an awfully long time to not know what was wrong, I'm sorry you had to wait so long to get an answer.
I don't think my dad ever wants to do trials. We watched The Big C and he said how if he ever had any treatment, he'd want to make sure it didn't do anything crazy, like, he'd want to be sure of what could happen.. I dunno. That didn't make much sense..
Thank you Eve, :).
– Dee

[dee4894Participant]

Hey :). Thank you so much, I'll be sure to ask questions and things. I'm sorry to hear about your mum. I try hard not to cry at all because it just gets me down, it helps to just do bits around the house and not think about awful things.
Lots of love to you too.
– Dee

[dee4894Participant]

Thank you for the kind words, they mean a lot. It's helpful to know that there are other people who are in the same or similar situation. I'm being as strong as I can; we are a close family, but not the hugging and "love you so much" type. Just kind of sensible and quietly supportive type I guess.
My dad is in the Medway Hospital (which seems to be the worst place ever) and we live in Medway, Kent. What about you?
– Dee

[dee4894Participant]

My dad, aged 56 (57 in July) was diagnosed with Myeloma stage 3, recently.
He was told many things before cancer.
Trapped nerve > chest infection > shingles > enlarged organs > myeloma > lymphoplasmacytic lymphoma > now myeloma again.
He's really sick, and I'm terrified. He has long hair and a beard and I've never seen him without it and when he has chemo (though I'm not sure he wants it) he'll most likely lose it. Possibly the worst thing I am able to think about right now, because if I think anything close to not having him around, I will crumble.
I think I just need to know what's going to happen and about chemo (though I know each drug and person is different), etc.
– Dee

*edit*
Also, he had symptoms of:
> Severe pain in rib area (it was thought he had fractures in ribs 7&8 but they can't make up their minds)
> Back pain
> Pain from the 'grossly enlarged' liver (and spleen, etc).
He currently has all of those, plus:
> A possible sternum fracture
> Vomitting (though only bile)

He goes from one extreme to the other with blood counts and levels of calcium.
Also his kidneys are only working at 20%.
He's losing weight from lack of food and vomitting.
He was readmitted last night until they find good medication for pains, sickness and chemo type ones, also to find out if he has fractures.
They say his bones aren't looking bad, which is honestly the only thing whic his good about this, so it seems.

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