Hi Clara
What I've been told, even at the worst really doesn't sound too bad – a few days of POSSIBLY feeling really lousy, plus a few weeks of tiredness and some months of being careful and quite tired, to get a possible extra 5-10 years. Well, I'm already easily tired and back-achey and I had a month (pre-diagnosis) of feeling really lousy and no appetite, so while I'm not looking forward to that bit, I know I can get through it and come out the other side.
62 is quite young still, but I guess it depends how fit your dad is. And none of us know how we'll respond to the high dose chemo. I barely noticed the milder chemo pre-stem cell collection, despite it making my hair come out. So, while I've been advised how bad it might be, I'm prepared to just go for it and see what happens. Obviously I'm hoping it'll be an easy journey, but if it's not, then it's not, but it's not forever and it will pass.
I know I'm quite a young person to have myeloma, so the doctors didn't talk about considering it – it was just offered/expected even right from the point of diagnosis. I know I could have said no at any point, but on consideration and the fact that it's considered the gold standard treatment currently, it seems worth doing.
To give you some hope and it's something I often think about when I get a bit scared/nervous, a friend of mine's mum, who is now 75, had a stem cell transplant – one of the earliest ones – about 10 years ago (so she was 65 at the time) and is not only still alive, but well and very active, writing for the university and doing all sorts of physically demanding creative stuff.
Anyway, I hope that's useful food for thought.
I wish your dad well whatever treatment he chooses to take.
Jet x
Thanks Min, Clara and everyone for the positive comments about my bald head. I really like it… who knows, maybe I'll keep it that way for while. Just wish the weather would improve enough to need the sun cream instead of a hat. Brrr…
Alos, thanks for clarifying about the GCSF injections. They don't bother me at all and my friend is now quite confident and proficient at giving them, so if they're prescribed, that's fine. 🙂
Thanks Bridget, especially for the top tip!
I'll let you all know how I get on, when I'm to it. x
Thank you Min.
Your message is also very helpful. It just shows, between Peter and Lorraine, how very different the experience can be.
I've been told they'll give me ice, but I may try and ask for the mouthwash that Lorraine mentioned too. As for not eating grapefruit – no problem there – I don't like them. 🙂 Seriously though, I generally lose my appetite completely the minute I step through the hospital doors, so I'm not expecting to eat loads. But thanks for the advice.
By the way, what are CSSF injections? I've been told I'll be given prophylactic antibiotics, antifungal and antiviral medication, as I had after the chemo prior to the stem cell collection, but no one has mentioned CSSF injections. Are they the same as the GCSF injections that I had the week leading up to stem cell collection?
I'm eating loads of fruit, juicing including wheatgrass and eating well just now, cycling when the weather's ok and will be going camping for a week before going into hospital, so hopefully walking and getting lots of fresh Welsh air to prime me. Not sure I'll be in tip-top condition, but hopefully well enough to deal with it.
Jet x
Yeah, me too!
Thanks for asking, Debs. 🙂
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 not have it so bad, than the other way round.
Good to hear you're more or less ok now.
I too have noticeably less energy than pre-myeloma. If I am very active one day, I usually need a day on the couch the day after. I've mostly accepted that, but am expecting it to be worse immediately after the transplant before returning to how I am now.
Thanks again.
Best wishes for continued well-being
Jet
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 even now, while I am hopefully years away from death (but none of us ever know for sure – with or without myeloma, do we?), then I'd be honoured and touched and excited and want to be involved. I don't have children – not sure if this makes any difference – but really it's probably of more importance for you as parents to create that for your children. I also wonder what John thinks about it?
My opinion is to go ahead, but that's me and ultimately, you need to decide for yourself/for John. I hope you find a decision you're happy with.
Best wishes for all of you
Jet x
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. We said we'd ask after each other, but probably won't be able to see each other, as we'll both be so vulnerable – we could potentially kill each other. But who knows, if it goes smoothly, we might be able to wave through a door or something.
If you see me another time at the hospital, please do say hi. 🙂
Best wishes
Jet
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 you thought I was ignoring you. I'm touched that you're all thinking of me.
I had a very successful stem cell harvest – they managed to get 5 million of the wee b*ggers out of me, over two days. And I got a lovely rich blood transfusion to boost me up, for my troubles. It wasn't at all painful or difficult. My friend got very proficient with the GCSF injections the week before. The insertion of the Hickman line was the least pleasant aspect and it has been a bit uncomfortable at times, but it's all fine at the moment.
I went away the weekend after the harvest for a family party, which was lovely and now have a few weeks off before I go into hospital for the dreaded high dose chemo and transplant. Then you can really think of me and send good vibes – I think I may need them.
I've had a lot of hair loss from the chemo for boosting stem cell production, so after the weekend, we shaved it all off and I'm going boldly bald, except when it's cold and I have to wear a hat/scarf. Fortunately, it looks good on me and I love the look and feel of it, so all's well for now. 🙂
If you want to know more about what's going on for me, you're welcome to read and subscribe to my blog: jetblackliving.wordpress.com. It's almost up to date. But it's fine if you don't wish to.
Haha to Dai – "quite often" – LOL! I think we've seen each other at the hospital once! And once at the Info Day. Hope it's all going well for you. I was in there yesterday actually for a quick line flush and chat with Dr Jenny Byrne. She told me that my biopsy results show only 1% myeloma in my bone marrow, so I'm officially in remission!!!! Hurray!
Best wishes to all of you and here's hoping your experiences are as untroubling as mine is so far.
Jet x
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 blast of chemo.
Nothing like a last minute decision, eh? I wonder how she'll respond. If it's interesting I'll post it here.
Up to this point, I've gone along with everything they've suggested/offered/prescribed, so it's quite strange to be questioning things and putting myself in a position of having to make a choice about something. I think I almost prefer it to just be told what to do… easier, innit? 😀
The last few weeks have been great though. Off the drugs, feeling good and energetic and enjoying my food once more. I've even stopped taking the supplements as popping pills just reminds me that I'm an ill person, so I decided to have a few weeks off and frequently forget for hours at a time.
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 not met the Prof, but both consultants seem to really know their stuff, in particular Dr Cathy Williams who, from what I've read, has done a lot of work in this area, both in the UK and USA.
Best of luck
Jet
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 Nottingham, the hospital team have made it clear that they are there to support the carers/family as much as the patients. And they have been great about answering even the oddest-sounding questions.
The questions you are asking can only really be answered by the medical team, so I hope you manage to get answers that reassure you, but I would generally concur with what Mike has said above.
Best wishes
Jet
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 sure you celebrate that gift on a daily basis.
As for your family, I am so sorry. But my reaction was why on earth do you have to send them birthday cards????? Sorry if that sounds harsh, but they aren't there for you, so why would you continue to give them any energy? Save it for yourself and those around you who love and care for you and were there when you needed that support.
One of the things I have been through on this weird and (not always) wonderful journey has been a kind of spiritual/emotional/life spring clean… and one of the aspects of that was to dump anyone in my life who wasn't a positive influence, didn't give me energy or actually drained me. I didn't see it as a nasty thing, but part of my health regime in a way. I think this was one of the most important and beneficial 'healing' things I did – who needs any additional stress, eh? So I would encourage you to consider it… as a way to further take control back in your life, given how much control we give up to the cancer and its treatment. Anyway, I'll leave you with that suggestion. It's maybe not for everyone…
I am very lucky with my family, as we are quite tight – my mum, brother and his wife, aunt and uncle/aunt and the subsequent cousins and their spouses/children. They are all in regular contact, read my blog, email, skype, text and call me. They don't all visit as they are quite far flung around the world, but we are planning a big family gathering prior to my SCT, to celebrate my cousin's and my 50th birthdays in July. I think the worst thing I experienced, which wasn't so bad, just awkward, was my cousin's wife on the phone telling me how "terrible, terrible" it is… I know she means well.
My friends circle has shrunk since my spring clean, but while smaller, it's much more 'real' and supportive and now includes some surprising additions of people who somehow appeared out of nowhere to show themselves as good friends. For example, when I was really ill in January, prior to diagnosis, Helen came round, cleaned my house and did some ironing as I was too weak and the house was a tip. She did it in such a way that it was fun for both of us and I didn't even feel embarrassed. Before this, we were something like friendly acquaintances… Now I consider her a true friend – and she makes me laugh, which is definitely healing.
I am not a particularly mainstream person, so I approach myeloma like most other things in my life, in a less than conventional manner. If it's helpful to you, please use it. If not, I hope you find another way to manage your feelings, like go with Angelina's method of simply letting them go mentally and focus on the good things. Or you could just 'forget' to put a stamp on the envelope of the greetings card, so they have to go to the post office to collect it. 😛
But really… why on earth are you bothering with these people?
Hoping you find a way through and get to concentrate on more enjoyable stuff.
Jet
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 'afterlife', it was so good to read your post about Sam.
I wish you both continuing good health and happiness.
Thanks again!
Jet
