This topic contains 15 replies, has 8 voices, and was last updated by 
fairlifeproteinshakes123 4 months ago.
I believe that most of us with myeloma will have been identified as most susceptible to catching the virus and have to stay at home for 12 weeks. In the press today there are reports that this may be extended for a year. We have all had to recognise that our life expectancy has been shortened.
While respecting that we there is no way we should put others at risk, particularly workers in the NHS, I believe that we do not present the risk that the government says. In our situation we will take more care about social distancing, hand washing etc than many people already do.
If there is a gradual reduction in the lockdown in three weeks time we will still have another five weeks to go. I have a feeling that to extend our lockdown to a year could be carried out without proper debate about what this means.
A year could be a significant proportion of what is left of our lives.
Hi Neil, Yes some soul searching to be done on an individual basis. I am currently furloughed (which is great) but doubt whether the govt will furlough us for a year? – tho, for me, that would be great as I would be getting paid but carrying on life as normal as possible. We are all supposed to be shielding but how many of us are out on quiet walks? (me) and I go to the shops when I need to (but wear a mask n gloves).I am in remission and well and have no intention of hiding away for a year – my choice alone. Individually we have to decide what risks/outcomes we are prepared to take. I will live my life/family life well and if furloughing does not continue I will stop working as I think the workplace is where I pick up all my bugs. Even if we can furlough on health grounds I am sure we can decide not to furlough and go to work – if that is what an individual wants to do. We never know when remission ends and I already had lots of plans for summer/travel that have been scuppered. I bought a body board bag on eBay last week and when the beaches are open and the 12 weeks are up that’s where I’ll be heading regardless – but will aim to do all I can in a quietly safe manner- that’s all anyone can ask of me and I make no apologies for my choice. Our life. Our choice.
Rebecca
I’m glad to hear other people saying the same thing as me, I’m currently shielding and being careful but I will admit to going on a couple of quiet walks, I stay well away from other people and I don’t touch anything. I can’t see how this is any more dangerous than my family bringing something back into the house with them.
This is for my own mental well being, being cooped up inside for all this time is driving me crazy and the ability just to go for a walk makes that so much better.
Once the restrictions are relaxed I will continue to be careful but I will be seeing my family.
Stay safe everyone
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 Greg, When I asked my GP for a shielding letter I got a txt telling me I was vulnerable but unless on treatment not in the “extremely high risk” group and to social distance. So even the medical fraternity are confused! I contacted our Helpline who clarified it was “everyone” and I asked the GP if they would align with Myeloma Uk and Bloodwise guidance. I got a shielding letter. My immune system is always below normal and I know I struggle to shake things off so I do believe I will be in great difficulty if I get it but until there is a vaccine what can we do really? Be careful, wash hands and hope for the best. If The highly vulnerable can be furloughed long term I suspect the current list will become super small.
I think there will be consequences from coronavirus for everyone: life as we knew it will be different, myeloma or not. Everyone’s difficulties in life will be exacerbated.
Data is not yet collated to determine what additional risks we as myeloma patients have in terms of coronavirus, in the meantime the NHS/govt have opened up treatment choices to our consultants which gives them more flexibility to treat us in the least compromising way possible, & this makes me feel reasuringly valued. Anecdotal evidence shows that most myeloma patients in high risk areas have managed to avoid getting coronavirus so far, and that sometimes they have avoided being infected even when ‘healthy’ partners have had severe infections. (Reported by a myeloma consultant in New York)
Some myeloma patients have had severe complications and survived, some of us seem remarkably good at beating the odds. I’m not yet ready to concede that my life will have been cut short by coronavirus, although statistically every one, myeloma or not, will have a reduced life expectancy as so many people will have died.
I suspect that we will be advised to stay in isolation for a very long time, but as Rebecca says, at some point it will be up to us as individuals to determine risk/reward for ourselves. I suspect as myeloma patients we will be pretty good at it as a group as we are already aware of infection risk, that’s my hope.
It is good to see your responses to my initial post about the lockdown. Since then there has been much more in the press about extending the lockdown but mainly for the over 70’s in general, this seems to be genarally accepted as a daft idea. However there is not as much about the 1.5 million on the highly vulnerable list which includes people with myeloma.
For myself as an example, I am 71 and was diagnosed in 2016 and am on permanent chemotherapy as I had a relapse in 2018. I am on Dexamethasone, Ixamobid and Lenolidomide. Fortunately this seems to be working as my blood count is good and scans show that currently my body is cancer free. Presumably therefore my immuno system is not so compromised. Before Covid-19 I helped look after our grandchildren during the week as both parents work full time. In addition I swam regularly, an exercise medically recommended by RNOH at Stanmore as the first myeloma tumour forced my vertebra onto my spinal cord, this resulted in the loss of my ability to walk. I can now walk a mile and swim 30 lengths. I feel that I have a life worth living!
As part of the vulnerable group, most of us have probably already have to consider that our life expectancy is shorter than expected. My motivation to keep going is looking forward to seeing the family, particularly the grandchildren, before my time runs out. An extended lockdown could take away a significant proportion of the time I have left.
I believe that if a lockdown is to be extended there should be a mechanism for coming off the ‘vulnerable’ list. If a changed medical condition, for example less chemo meaning we are not so immunosuppressed, is not a good enough reason, should we be put in the position where stopping the chemo would allow us the freedom to live a normal life within any other restrictions in place at the time?
Hi Neil,
My understanding is because myeloma is a cancer of the immune system then regardless of whether on chemo or not, relapsed or in remission, we are all high risk unfortunately. I did read that those with terminal cancer, with less than a year to live, must choose what they want to do. There is no house arrest or monitoring of individuals so it is up to you what risk/reward strategy you personally follow. When tests are plentiful in theory we could mix with those who have tested positive for antibodies.
Hi Rebecca,
It amazes me the many different ways myeloma can manifest itself. My initial diagnosis took a while as I have never produced paraprotein and each time the myeloma has appeared as a tumour requiring surgery. I have had a stem cell transfer.
The first reason for the ‘vulnerable’ list being produced was to protect the capacity of the NHS, this has been achieved. For us to be at risk to others, especially NHS staff, we first have to catch covid-19. As already mentioned we are already used to being careful about contact with others due to our lower immunity.
We are almost half way through our twelve week lockdown, the general lockdown will probably ease off in another two weeks. We still have another six weeks to go. I do worry that the 1.5 million on the list will be an easy target to be told that we should isolate for longer.
We need to make our voice heard so that we are trusted to make our own decisions about our activities. I have been writing to whoever I believe will be able to influence the decision when it is made, presumably this will be closer to the twelve weeks but may be lumped in with the general decision due fairly soon.
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.
Good Evening I was very glad to find this discussion going on. Ever since myeloma was flagged up specifically by Chris Whitty at that press conference before this lockdown my heart sank and has stayed there. Like Greg says I don’t understand the science at all!
Can only hope that as time goes on we all get more specific guidance from our medical teams but my guess is they will understandably err on the side of caution!
Maybe we will just have to weigh everything up as time goes on and make our own decisions as to the level of risk we’re prepared to take? How can we socially distance or shield from partners and children who will need to return to some kind of normal life for months and months?
I suppose when it comes to it we will just have to summon up the strength we’ve all found time and time again and carry on!
Best wishes to all
Sue
I have been glad to read all the different comments on this topic. It is such a difficult one. I am between DVD treatment and a Stem Cell Transplant and wishing I could be out using this time to see family and friends and get out into the countryside. At the same time, the threat of the virus keeps me shielding at home. Whilst I am grateful for the services such as (eventually) being able to access online food deliveries, I don’t normally think of myself as a ‘vulnerable person’ and find it quite hard to wear this label, even though I know it is true. And my other thought on the matter is that I feel very sad for those who were going about their normal lives – without dealing without dealing wth a time-limiting diagnosis such as Myeloma – who suddenly and unexpectedly passed away from the Coronavirus. Its not easy and there are no simple solutions.Thank you Sue for your wise words at the end of your post – that sums it up well. I am trying to do just that.
Best wishes everyone in this continuing situation.
Rachel
Hello Rachel
Hope you are well. Your post rang bells for me. Like you I do not feel like a particularly vulnerable person and finding ourselves on this list is very difficult. Particularly when I see my very elderly neighbours in their late eighties going out and about and having quite a lot of visitors too! It brings the disease too close to me at a time when I was hoping just for a while to be able to push it away from me. Like you I was hoping that this was a time for getting on and doing some fun things not hiding away indoors. I did enough of that over the last two years having treatment and STC.
I’m sorry that you find yourself in such an awkward position too. When you’ve made the decision to go ahead with STC you just want to get on with it!
There is always this nagging feeling that you allude to in the phrase “time limiting”. We dont want to waste any of our precious time!
As you say there is so much loss and sadness at the moment. It’s hard to feel very optimistic for the future of everyone young and old.
Best wishes to you
Sue
Hello Sue,
I think most of us who, before coronavirus, were continuing with life as normal as we could have been finding the shielding very restrictive. It is important to remember that the shielding guidance for those seen as extremely clinically vulnerable is voluntary and sits alongside the statutory regulations for lockdown. It is for individuals to decide to what extent they will follow the shielding advice. I have had a stem cell transfer and therefore all the family understand what neutropenic means and the safeguards necessary. We have been taking care of ourselves for some time now. I love swimming and in January we were on holiday in Madeira.
Some people will want to continue to self isolate, and this is obviously fine. It was my birthday on Monday so my treat was that my son and grandson brought over fish and chips, which we ate in the garden. I think what I am saying is, that provided that you are using common sense (Boris Johnson’s words) and not putting others at risk, you need to make your own decisions about what you do. You must be happy in your own mind about what you are doing.
I don’t know your circumstances but, provided you can, I would not think you need to hide away indoors.
All the Best
Neil
Dear Neil
Thanks for your reply. Its made me feel much cheerier! You’re right of
course that provided we are careful and use common sense then all should be well.
After all as you say who is better equipped than those of us who have experienced neutropenia! Our families are clued up on all that too.
Was just feeling down in the dumps this week as we had to cancel a long awaited family holiday to North Devon. Mind you looking at the weather forecast for this week we most definitely would not be swimming!
Glad you were able to celebrate your birthday with fish and chips. I bet they were delicious!
All the best
Sue
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