[neilmaurerParticipant]

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

[neilmaurerParticipant]

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.

[neilmaurerParticipant]

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?

[Author]

Posts