Tom, it's absolutely fine to ignore a post that doesn't relate to you.
I don't consider being lesbian a sexual preference, it's more complex than just a preference and I think that's true for most lesbians and gay men. But this is not the place to go into sexual politics. Suffice to say, that I would not need to explain this to someone who identifies as lesbian, gay or bisexual.
We can still face prejudice, discrimination or simply ignorance, despite certain levels of legal equality. There may be instances where being lesbian/gay is an additional issue we need to deal with, or we may need to "come out" in discussion with the medical profession when we need treatment for cancer or later when making end-of-life-type decisions.
I have been fortunate in being treated well and my partner respectfully included in consultations, but that may not be the case for everyone, just as some of us have had better or worse information and advice from our haematology consultants. So I wanted to offer an open door for discussion of any of these types of issues encountered by any other lesbians and gay men. I have also found it comforting to be able to make contact with others lesbians, so also wanted to offer that possibility to others.
I am doing ok, easily tired and very dry skin from the Revlimid, tearful and a bit depressed post-SCT, but other than that pretty much well and in complete remission. Thanks for asking!
I don't know if this is of any help whatsoever. I've not done any research or asked a doctor about it. But I was looking at information about Vitamin B and noticed that B12 deficiency can result in Peripheral Neuropathy, so I just wonder if taking B12 might help counteract PN…?
Hi David
Yes, Revlimid is in capsule form. The trial protocol is for 25mg per day, but my consultant was keen to give a lower dose, as the lower dose has been found to be effective in previous trials at the maintenance stage. So, due to my decreased kidney function, she was able to prescribe 10mg per day, with the option to reduce it to 15mg every other day or 5mg per day, if I had nasty side effects.
Like Deb, so far nothing to complain about, just a bit more fatigued and sleepy than I was, so I just rest and sleep a lot. As yet, no taste issues or leg cramps, which I had at the initial treatment stage and was anxious about this time.
Jet
Hi Helen
In answer to your question about how long it takes to get over the SCT… think of a piece of string. As you must know by now, and as we ALL have learnt, everyone is SO different. It would seem that the younger and fitter you are prior to the SCT, the easier it goes, but it so depends how you respond to the chemo, as those symptoms take time to dissipate once you go home.
I am 50 and now just over the three month mark and in some respects 'over' the SCT, but like Helen says while I have energy to do things such as cycling, walking, Tai Chi, cooking, weeding, etc. I get tired around late afternoon and tend to sleep for longer at night. I don't have a nap during the day, but I often need to sit down and do nothing much, e.g. watch TV, use the computer, listen to music, read, etc.
I'd say the beginning of feeling 'over' it came around 2 months afterwards, but it's so hard to pinpoint… at some points I noticed a distinct step-up, whereas other things seemed to change more gradually. The thing to bear in mind is that it DOES get better.
Best wishes
Jet
Hi Helen
I had my laptop in hospital with me and could write my blog, access emails and Facebook via the hospital's wifi system. There was no issue about germs at all. In fact, the specialist nurse was the one who mentioned I could take the laptop in with me. The only thing your mum would need to check is whether there is internet access.
To be honest, the isolation aspect isn't nearly as bad as you think it might be. In the first few days after the chemo and transplant, I was well enough to go outside, as long as I wore a mask. Another friend was actually sent home for the weekend, to return on the Monday when the blood counts would be falling. At the point when my neutrophils were zero or very low, I really didn't want visitors, but until then I had friends visiting, albeit not crowds of them and not hugging me and no one with a cold or anything, obviously.
A few other things she may want are a very soft toothbrush, lots of knickers, ice pops, Ribena or squash and a few nice things from home, like photos, her own cup/mug, short stories – I didn't have the mental energy for reading a novel, but could just about cope with short bouts of reading. But it goes differently for all of us, so I'm sure she'll find her own way through.
I hope it goes well for her.
Best wishes
Jet
Hi Keith
Glad to hear you're doing well. Sorry to hear about the itching. These things DO matter… quality of life is important. But hopefully, you can get something to manage it? Do ask… A Canadian woman with leukaemia wasn't told by her doctors about easy-to-access (from a pharmacy) products to help with dry mouth and dry eyes from GVHD, until 3 months down the line.
You're right, I don't come on here very often, but I'm doing ok. I was well impressed with myself last week, when I met up with another post-SCT myeloma friend for a walk, lunch, then 2 hours cycling on the Monsal Trail. I was tired afterwards, but otherwise fine. She's 4 weeks behind me, so I was even more impressed with her. The main thing I'm dealing with isn't so much on the physical side, but more on emotional.
Like Deb, I'm also on Revlimid on the trial. I have been/still am waiting to see if I have unpleasant side effects, but so far nothing horrid, perhaps just a bit more sleepy than I was, but I'm only 2 weeks in, so will wait and see. My consultant's assured me there are two levels of reduction possible if the side effects are too bad. And as Deb has said, Revlimid's been shown to be very effective at this stage, so I'm sticking with it for now.
Let's hope for long remission for all of us.
Best wishes to all,
Jet x
Ah, it's not the same woman I mentioned, but glad to hear your Dr Feyler is also an excellent consultant.
Debs
You say Nick used to sell HRT. Could you share his reasons for not wanting you to take them?
I saw my GP about the possibility of taking HRT, mostly due to feeling tearful and depressed. She thinks it might be helpful and has prescribed them, but I'm reluctant to take them. I'll have plenty enough pharmaceuticals in my body when I'm back on Revlimid in a month or so.
I am coping ok with the hot flushes – it's quite an interesting phenomenon, even if they do wake me up at night. I'm quite happy to no longer be bleeding. I'm on Zometa to strengthen my bones, so not too worried about osteoporosis. I don't mind the tears too much – better out than in, eh? And I/we have been through quite an ordeal, facing mortality so early, so I think it's ok to feel some sadness. As for the low mood/depression, I'm hoping I can counter that by getting myself out, volunteering, walking/cycling and interacting with people.
So really not sure about taking hormones…
Hi Paul
Like you, I have light chain myeloma and yes, I had to laugh when you said the 24 hour urine container was a bit intimidating. One time they asked me if I needed more than one…! 🙂
I just wanted to ask you or Carol if Dr Feyler's name is Charlotte? I had an about-to-be consultant do my initial bone marrow biopsy in Feb as part of the initial diagnosis. She's German and was SO lovely, calm and clear about the procedure. She was about to go off to Leeds to start a new role as a haematology consultant. If it is her, then I am sure you're in good hands. Please do send her my regards when you next see her – if it's not too intrusive on your own medical issues, of course.
As for the SCT, I was in hospital for 14 days in total. Different places operate differently, but I doubt you'll be in for 3-4 weeks. Maybe they say up to 3-4 weeks just to give you the worst case scenario??? A friend of mine in Manchester had the high dose chemo and stem cells returned, then they sent her home over the weekend, to return on the Monday when the effects of the chemo started to kick in.
I would say that it is the worst thing I've ever been through and while going through it, it felt interminable, BUT… now I am 70+ days post-SCT and feeling so much better, stronger, more energetic, more positive in outlook and most importantly, with a normal ratio of kappa:lambda chains and no myeloma proteins in my urine, I am now in complete remission!
If you want to know any more, you're welcome to take a look at my blog: jetblackliving.wordpress.com.
I admire your positive attitude and am sure your regular exercising will really hold you in good stead in terms of coping with the meds and procedures, recovery and generally staying healthy.
I wish you all the best.
Jet
Hi Alexis
I was on Revlimid for 4 cycles prior to the SCT and yes, I can confirm that like John, it made me very woozey. Several days, I would drop off on the couch during the day. Not an actively chosen nap, but more like slipping away for a while. As I didn't have to work and have no children, I found it quite nice to be able to "go with it", but very hard if you have things you need to do. I couldn't possibly imagine working while I was on it.
I am now 70+ days post-SCT and have been randomised for Revlimid as maintenance medication. A bit of a double-edged sword… It's supposed to be very effective at this stage in keeping the myeloma in remission, but I am not looking forward to the sleepy effects, as I am now feeling quite energetic and wanting to do stuff. It also affected my taste and therefore appetite, as well as the mental vagueness effects Carol describes above. But my consultant has said that if I'm struggling with the effects, we could reduce the dose, or if necessary stop and come off the trial altogether.
On a slightly different note, while I appreciate the enjoyment, strength and probably retaining his sense of self that his work provides, in terms of income, has John applied for Disability Living Allowance? I was coming to the end of a short-term contract when I was diagnosed, so I don't have a job. The DLA I receive along with ESA (like Job Seekers but for ill/disabled people) really make a difference to my finances. DLA is not affected by any other income, so he'd be entitled to it whether earning or not. But it may just ease any concerns about working at less than full tilt and it will help with all the little extras brought on by being ill.
If he does wish to claim, he needs to complete the form as though it's his worst possible day. If you want more info about this, I'm happy to help, or he/you could get support from your local Citizens Advice Bureau.
Congratulations on getting through and out the other side. I'm coming straight after you. Yay for us!!!! 🙂
Just a quick update…
I walked out of the ward this morning, albeit slowly, but I managed a fair walk to one of the on-site coffee shops, to buy some Ribena, which I can just about manage to drink. My throat is still really sore and closed, making it hard to swallow anything. I tried some chocolate, but that really wasn't a good idea. I felt ok when I got back to my room – no huffing or puffing. 🙂
I'm off the drips and antibiotics. All being well, they will send me home tomorrow, which pleases me no end. I can't wait to be able to drink a long glass of fruit juice, to sleep in a bed that doesn't crackle with plastic/rubber, to stroke my cat, to go to the loo without a bed pan, to see my garden.
Thank you all for your kind thoughts. x
Well done Keith!
Yes, things are going well for me too, so far. I've written about it under another post that Dai started wishing you and me Bon Voyage! So I won't put it here again.
Hope you continue feeling well. I don't know about you, but I really don't mind the tiredness. It's quite nice to just give in to sleep. I'm just hoping I don't get too much of the other stuff.
Best wishes
Jet x
Thought I'd check in again and let you know I'm ok. No longer on a drip, just being monitored – weight, water in, water out, normal obs, blood. I keep brushing my teeth, using the mouthwash and Nystan oral stuff I have to swallow. So far, just a dry mouth and slightly loose stools.
It's very weird just waiting to be ill… which may or may not happen. But yesterday, I got dressed in proper clothes and went outside for a walk in the sun, with an obligatory mask on. Check out my blog for a photo if you want a laugh. 😀
I was talking this morning with one of the nurses, Vicki, who remembers you, Dai, very well. She asked after you and sends her best wishes. If you're in clinic or Day Case one day, you could pop up and say hi, although I think she may mostly do nights. She said she misses the follow-up contact, seeing people after they leave, when they're feeling well again, so if you get the chance and want to, it sounds like they appreciate seeing you/us afterwards.
Has anyone heard how Debs is getting on? I think she's going through STC too now, isn't she?
Jet x
Absolutely!!!!
The period after stem cell collection, with no drugs was great for me. I felt more or less like myself again. I went off to Kent, and a family party in London and last week camping in Wales, plus gardening, cycling, seeing friends.
Use the time to do all the things you enjoy and make you feel good and healthy. Eat good enjoyable food, get exercise and see lovely people. That way you'll be in good condition for the transplant.
Have fun!
Jet x
