Hi Lorraine

Thank you so much for sharing your experience. That was exactly the kind of information I was after. You've not waffled on at all. It's very helpful and you've not worried me. It sounds like you had it much more how the first nurse told it, which is what I expected.

For me, it's preferable to hear the worst it could be and maybe…[Read more]

I just had another thought…

Why do we save these lovely precious ideas for people dying of a nasty disease? It is a lovely idea!

I think maybe everyone could create a memory book or box for their children, family, friends, loved ones… We're all going to die at some point and leave people behind, aren't we?

Jet

Hi Angelina

Sorry to hear of your situation. It always seems to me that it must be so much harder for those around us than for us as patients.

As for the memory book, I don't think it can be right or wrong. It's a personal choice…

For myself, I think it's a wonderful idea. If my partner, friends or family decided to do that and start it…[Read more]

Thanks Dai!

I had a nice chat with an AML patient in the clinic the other day. I was in on a Thursday instead of Monday, so a different set of patients – less people, but a lot more bald heads at that clinic! 🙂

She's going to be on the same ward as me at the same time – bone marrow transplant for her while I have my stem cells transplanted.…[Read more]

Hi Min, Gill, Jo and Dai

Thank you all for your thoughts. You've not seen me on here because I've been out and about, having fun and I have to say, I often find this forum a bit depressing, so tend to avoid it. That may change when I'm feeling less lively, I guess.

I only noticed this thread because Gill sent me a private message. Sorry if…[Read more]

Yes… I have also sent an email, with the video clip attached, to my consultant asking her to explain the pros and cons of SCT and why she thinks it's beneficial, as Dr Berenson clearly thinks otherwise, with a request to respond before Weds, when they are meant to be inserting the Hickman line and Thu/Fri having the pre-stem cell collection…[Read more]

Hi Alistair

Like Dai, I also go to Nottingham City Hospital Centre for Haematology and have had nothing but a positive experience, supportive nurses who return calls usually within 24 hours and have time to answer even the most awkward or 'silly' questions at clinic or over the phone, prompt response to strange side effects and concern

I've…[Read more]

Hi Ruth

I remember you posting when your ex-husband was first diagnosed and I know you're in a slightly difficult position, a bit on the outside of things, but still affected and concerned.

I think I previously mentioned that you can contact the specialist nurse even though you're not the current partner to the patient. Certainly here in…[Read more]

Hi Roberta

It's absolutely fine with me that you use this forum to rant about whatever's going on for you. I'm facing SCT imminently, so I'm pleased to hear your remission is giving you back your old life. I'm not sure I want my OLD life back, but feeling well and having choices again must be great after the initial diagnosis and treatment. I'm…[Read more]

Hi Nicki

Like the others, thanks for your uplifting post. I do find it hard to come on the forum some times, as reading about the suffering others are going through is too depressing. But as I am facing the stem cell harvest and transplant process imminently and have just been asking my specialist nurse loads of questions about it and about the…[Read more]

Hi Dai

Good to read your update after seeing you and Janet at the clinic Monday morning. Angelina is right, I think we do have an excellent team at Nottingham. Having heard stories from other people, on here or elsewhere, I'm very impressed with how well they respond and deal with situations that arise, or questions I ask. Good luck with the…[Read more]

Hi Gina

I'm sure it's been explained to you/your mum that the tiredness and breathlessness come from anaemia which myeloma causes. I am nowhere near as drowsy as I was in the early weeks/months, but still have occasional lapses of energy. If I just go with it, I can quite enjoy the melting feeling of drifting off on the couch. Perhaps if your…[Read more]

Hi Liz

While I can see that everyone on this discussion forum is so very helpful and supportive, I would say to always contact the nurse/doctor at the hospital when you have concerns. They're there for you as well as the patient. I think in many ways it's harder being the carer.

I have had a couple of uneasy moments when I've been able to…[Read more]

Thanks for that, Jo.

I've asked my kidney consultant for his opinion, as I know bicarb is high in salt, which is obviously not good for kidneys. Also, what I've read about it in terms of helping kidneys, is about stopping progression of the disease, but not reducing it. And my kidneys are already improving from the improvement of the myeloma…[Read more]

I suggest being kind to oneself and taking it easy be continued forever, not just a while… 😀

I am so sorry to hear of your loss.

I don't know if this is helpful to you at all, but I would like to say that I am on Revlimid on the XI trial and although I've had some really unpleasant side effects from it, in fact I hate it – it is actually working on the cancer for me.

However, when I first got the tablets, I dutifully read all the…[Read more]

Hi Bubbles

While I can see that there are a lot of very supportive, helpful people on this site, who will do their very best to answer queries and share their own experiences, I would really strongly recommend that you and MIL ask as many questions as you can think of, of your doctor/consultant. They really are the best people to explain what's…[Read more]

Hi Jo

Thanks for the nod towards Sodium Bicarbonate.

A non-MM friend (who's done a fair bit of research as she has lupus) mentioned it the other day on the subject of changing one's pH balance to a more alkali envrionment. An alkali, low-sugar and oxygenated environment is very anti-cancer, so for MM patients with kidney problems, it would…[Read more]