Hi Ellen,
I don’t think it would be right for me personally. I have spent most of my time with myeloma yearning for some sort of “normality” so I don’t think it would do me any good psychologically speaking to wear something that reminded everyone I’m not.
I think the problem is that the ones who don’t care to do social distancing will most likely still not care even if you wear a badge.
I do think Myeloma UK and other Blood Cancers should focus on an awareness campaign though – something like everyone doing their duty to help those around them by social distancing – and to try to break the connection that many people have that “extremely vulnerable” means old and frail, which in coronavirus terms it definitely doesn’t mean.
Greg
There is something in the semantics of the current discourse that I find quite offputting, when people talk of “shielding the vulnerable”. Don’t get me wrong, I understand that people have our best interests at heart, but I often see it used in a way that does not appreciate that we are actually human beings. Personally, I am all for giving choice to individuals, I don’t like the idea of an enforced, and effectively permanent, isolation. I would hope that Myeloma UK is lobbying on behalf of myeloma patients to ensure there is a balanced approach to how this is taken forward. To me, it only seems to be myeloma patients who are permanently at risk from the virus – Bloodwise says that leukaemia and lymphoma patients should be fine a year out from treatment. I don’t understand the science behind it, but I hope that Myeloma UK understands how depressing and dark the messages currently being given to myeloma patients actually are. I know that we are free to interpret the rules as we see fit, but why are we being forced into making those decisions? Personally, I think there should be more flexibility in the guidelines and allow individuals to make decisions that work best for them. I very much doubt a myeloma patient is going to run off and be reckless, but I think myeloma patients also need hope that there is a possibility of living some sort of life whilst this virus is still around, which it is expected to be for quite a long time.
Must admit I am struggling quite a bit with this. Over 4 years in remission, 41, coach the local football team, pretty fit relatively speaking. It was a shock to be told to shield for 12 weeks. Definitely appreciate what everyone is saying about personal choice, but I’ve got 3 young kids, if I were to ignore the guidance, then catch something and cop it, would they think what a waste? Not sure what to do really. I try not to think about it too much to be honest! I would much prefer they didn’t have these shielding guidelines and just told everyone to be careful – it’s putting a lot of pressure onto people and I’m not sure what the benefit of that pressure is? Also, I do wonder if Myeloma UK has thought through the guidance that all myeloma patients, regardless of where they are at in treatment, are extremely vulnerable. What is the exit strategy in that scenario?
Hi Jack,
I don’t often post in this forum but stumbled across your post and felt compelled to reply. I was 36 when diagnosed, coming up for 4 years ago now. So much of what you have written was relevant to me too although I was a little older and had already started a family. The hardest part for me was and still is the confirmation of the uncertainty regarding the future. In your 30s, you are supposed to be in your prime, making big plans for the future and making your mark on the world. I know the feeling of having those notions somewhat jolted. It’s good that you are on watch and wait, that is better than being on treatment, and even if it feels like a false positive, you should definitely take some comfort from that.
The biggest advice I can give you is to delve deep down into your soul and work out what is most important to you in your life. Imagine it is all over and you are looking back, what would you most want to have achieved? Everyone should do that anyway, regardless of illness, but a cancer diagnosis focuses the mind. And whatever it is that is most important, that is where you should focus your energy and live your life doing. If making a success of your business is most important, put your energy into that. If it is relationships/family, put your energy into making that happen. If it is doing things you’ve always wanted to do, put your energy into doing them. The time now is for deep self-reflection, working out what your life is going to be about and doing those things which give you what is most important to you.
For me, it was spending time my family and trying to make a success of that. So I pulled back
from my career (I still work because I need to pay the bills, but I don’t let it be as all-consuming as it once was). I wrote a book because I’ve always wanted to do that. I do some volunteering as I wanted to feel like I was helping others. I must admit, I sometimes question whether I am doing the right things – for so long I was career-driven and it is hard to see peers going on to achieve what I wanted to achieve but I had to make some difficult decisions about what really was most important to me.
I hope you find what is right for you Jack and I also hope that you stay on watch and wait for a very long time.
All the best
Greg
Hi Vik1,
I am so sorry to read about your Mum and I send both you and your Mum warm wishes at this very difficult time.
In terms of the mental health side of things, what size hospital is your Mum in? If it is a major cancer centre, they will definitely have on-site psychiatric and/or pyschological support. You just need to make it known how serious it is. I was having big problems with GvHD after an allogeneic stem cell transplant and I was seen within 24 hours. Things had got pretty bad, and the staff saw the urgency of the situation. If you can show them how critical it is, you should be able to get the support you need.
Hope this helps,
Greg
Hi Steve,
Welcome to the forum although sorry for the reason you had to post. I hope things went well yesterday and you have a bit more information about your situation. There will no doubt be a lot to take in, so take your time, do your research, ask questions and try not to worry as best you can. I would advise sticking to well known myeloma websites for info – there is a lot of scary and out of date information on the internet.
As to your technical questions, I can’t really answer them as they are not questions I have asked myself. One thing I have learned is that the myeloma journey can be very unique to the individual. I don’t think there is a path you can necessarily predict.
In terms of something positive to cling on to, I was exactly your age when I was diagnosed. I’m three years in now (almost 40) and I feel well. There is nothing I can’t do now that I could do before myeloma came along. Also, I have no intention of popping my clogs any time soon and with treatments developing all the time, I think that is a realistic goal.
All the best,
Greg
Hi Jash,
Welcome to the forum.
I know how easy it is to get stressed out about blood readings, trust me I have been there!
The best advice I can give you is to try not to think about it too much. In my experience, readings can vary by a lot very quickly and different machines can come up with different results. The best bet in my opinion is to trust your medical professionals to tell you if there is something you should worry about. Dr Google can be helpful but also incredibly unhelpful. I would stick with liaising with your GP / hospital contact. That’s not to say you shouldn’t push for answers from them if something is unclear, but also try to trust them to get the right answer for you.
Wishing you all the best,
Greg
Hi Beffydee,
Thank you for posting although sorry for the reason you to post.
I think your question is a really hard one to answer because myeloma can be such a unique disease affecting individuals in very different ways.
Kidney failure can happen, infections can get people due to weakened immune system, it could be the treatment that causes the end, it is such a difficult one to know with any great certainty. For example, I presented with a massive blood clot in my leg – if I hadn’t got treatment, it would have been that that got me.
i think the best bet is to listen to the specialists, they will know the specifics of your father’s situation. Also, I would also add that people can be very poorly at diagnosis but recover very well when treatment gets going – i’ve learned that with myeloma, there is very little that is predictable. Hopefully you father will be able to build some strength soon to get the treatment started.
Wishing you all the best,
Greg
Hi Mastantuf,
Welcome to the forum, although I am sorry for the reason you had to find it. I have had 4 of the 6 drugs you mention. I think a lot of the time it can depend on the dosage of the drug, but generally speaking I found melphalan and prednisone to be the worst. The former gave me very bad stomach problems and the latter significantly altered my moods. But I did have high doses with both. I found I tolerated velcade very well with no noticeable side-effects but I know others have had bad side effects with that drug. Dex was also fine for me – some altered mood and increased appetite but generally well tolerated. I have not had the other 2 drugs but i’m sure someone will be along soon who has.
Hope this helps in some way.
Greg
Hi Paul,
Sorry about your name!
I was treated in Bristol and I cannot praise them highly enough – they seemed to know what they were doing.
I have the light chains myeloma so slightly different to yours (my PPs have never been high) but other than that the time frames seem very similar – diagnosed March 2015, auto SCT Oct 2015, allo SCT Feb 2016.
The procedures themselves are pretty much the same, I just had a much tougher post-transplant period with the allo – I got GvHD (which is the main risk). I was poorly for about 8 months. But I have recovered now and am feeling really well. Who knows if it’ll benefit me in the long run, but I’m glad I did it. But there are risks, so definitely worth taking your time to decide what is best for you.
Greg
Hi Millie,
Not sure if it is the same but I have had what was called a tandem transplant – an auto SCT followed by an allo (donor) SCT about 3 months after. I had the donor SCT when I was in remission – I was told it would give me the longest possible remission.
it’s a tough process to go through – a donor transplant brings additional risks not present in an auto, so it’s something to think long and hard about. I went for it because I was relatively young (36) so I wanted to throw as much at it as I possibly could.
please feel free to ask any questions about it.
Greg
Hi Kazaa909
i would back up what beetlejuice said – it can be two to three weeks after SCT before the patient begins to feel better. I was pretty shattered all the way through and often it was a comfort to have loved ones there even if I didn’t really engage. I took books in with me but never read them. Things tend to turn when the blood counts come back, which as beetlejuice says is normally after a couple of weeks.
Wishing you and your Mum all the best,
Greg
Hi Paul,
Happy birthday! 7 years, that is fantastic, and here’s to many more!
All the best,
Greg
Really sorry to hear your news. I was 36 when diagnosed and it knocked me off my feet. I’m almost 3 years in now though and feeling well, but as others have said it is a long road so look after yourselves and take things slowly. Any questions I can answer from a relatively younger person’s perspective, i’d be happy to help.
Greg
Well done Adrian! There’s still some time to go to fully build up your strength, but give yourself a huge pat on the back, you got through it!
Cheers,
Greg
