Is self isolating getting harder for you as time goes by?

Almost 12 weeks ago in a mammoth computer operation the UK government identified a big group at significant risk of harm from COVID19. They were labeled as the “elderly and extremely clinical vulnerable“. Somehow the label is almost rather stigmatising especially for those of us who are not even close to being elderly! The corona-crunch has affected everyone but perhaps some patients who are in this group of extremely vulnerable have been among the most impacted.

It certainly marks us out as rather different from everyone else. That sense of apartness and loneliness only grows as the general lockdown for “normal” people is gradually relaxed. Our own lock down looks highly likely to be extended beyond the end of June but no official decision has been made. And even in other countries experts in blood cancer are urging patients to take extreme measures to ensure they don’t catch the disease. So I suspect that whilst the details may be different elsewhere some of the thoughts and feelings are the same.

Many of us are grateful for the mere fact our government has gone to so much trouble to try and keep us safe. There were some inevitable teething problems, but as far as I am aware no other country has gone so far in trying to do this.

To be totally self isolating and told to not even leave our homes for any reason other than essential medical appointments is a major ask. So if you reading this and know someone else in that position please don’t forget to stay in touch with them to check they are OK. I think many of us are having good days and bad days as time goes on. It definitely feels harder for some of us now other people are beginning to be released.

Are you a rule taker or an advice bender?

Some of us want to follow the advice we have been given as if they are hard and fast rules. Somehow having the decisions made for us about what is risky behaviour is helpful for some (including me). Others, particularly those who live rurally have been making their own risk assessment and going out in isolated spots for walks. Now the general public has had the limits of how long they are able to be out lifted that may surely have become more difficult for some of the vulnerable to do safely as the numbers of people out and about goes up.

Many of us living in cities and towns have always felt that bending the advice in that way could not ever be safe for them due to the crowding of open spaces. Both groups sometimes feel a bit concerned about their decisions either way. We are missing out on a lot of social contact, and shielding is not a rule but rather advice. Like everyone in the UK we are subject to certain laws, and also certain suggestions. It seems important to distinguish between the two and I do hope we will soon see some more clarity on certain points in our shielding guidance. I do believe, however, that if you are going to make your own risk assessment it is wise to first carefully consider the available evidence that blood cancer patients are at greater risk.

In the news there is so much focus right now on getting “normal” people back into work and other relaxing of the rules. We do not get mentioned often as a group. And so far the “extremely clinically vulnerable” have not been considered as a group that should get priority for testing of ourselves and family for COVID19 antigen or antibodies. This feels a bit of an oversight as knowing you or your family have or had the disease could be literally life-changing for us.

Although some of us did get official calls to check up on us early on, few have spoken in any of the forums I am in of having that in an ongoing way. Since there is so little said about how much longer our home isolation might be extended, it can sometimes feel as though we are being forgotten.

In fact the NHS, government and the patient charities are clearly taking great care and thought in working out what our next steps should be. It is however hard to see a safe way out of the current situation for us any time soon.

There are some crucial questions that do seem to be outstanding, but I am pretty sure I heard in one of the press conferences that we would be given priority for the vaccine, presumably with our households, assuming it works. The current clinical trials do however exclude anyone who has an immune compromise as far as I can gather this seems to be because they are not sure it will work rather than having any specific safety concerns.

There are so many huge decisions for government to make I’m personally not too concerned that they haven’t thought yet about whether to extend our shielding. Truth is they want us safe. And no other country in the world has been this proactive about blood cancer patients as far as I’m aware.

Do you feel lonely or anxious?

If you are anything like me you have good days and bad days. The worst are the days you feel forgotten. As people begin to go back to work or travel to beaches and parks and even shops there’s a real risk that a whole day or even a whole week for some of us might go by without us being able to talk to anyone.

Early on some people spoke about receiving official calls to check they were alright or for a friendly chat. I never did get one. It turns out you always could ask for this and they have actually been widening the group eligible since they have so many volunteers! I do think such calls from someone who’s job (volunteer or paid) is to do that may well be beneficial for all of us whether we realise it or not. If nothing else because it forced us to ask ourselves the question are we alright or not?

One thing I’ve noticed about myself is there are some days I withdraw myself more than others. And actually I sometimes feel that “society” by which I suppose I might mean the NHS have forgotten me. That thought is a little unfair however, since when I’ve reached out for support it has always been there for me. For example I had to get antibiotics and steroids for an asthma exacerbation and presumed bacterial chest infection over the weekend and we managed to navigate our way around avoiding me needing to be assessed in A and E. Having things at home like a peak flow reader (if you have asthma), a blood saturation monitor, a good thermometer, and a smart watch that measures your pulse all really helps the clinicians in their remote risk assessments.

I first saw the above new tweet from NHS England yesterday evening. It mentioned the ability to self-refer for help and support for all self isolating people. One listed item was a regular weekly friendly phone call check-in service. We all miss out on so much social interaction, even silly things like talking to a shop owner, that it might be nice to know such a call was coming in a few days.

To be honest I felt a bit embarrassed about it when I first saw this and my British reserve came in. I thought other people probably need this more than me. After all I do have some friends and family, but the answer to them when they call mostly tends to be “I’m doing “OK”.

Having reflected on this over night, I reminded myself that hundreds of thousands have volunteered to be part of this service. Quite a few have not had any tasks allocated to them yet. I know how much I like to feel like I am making some sort of difference to other people, so since it is more blessed to give than receive I thought why not “bless” someone with the opportunity to call me? Some of you probably talk to fewer people than I do and knowing one person had a job they’d committed to doing to ask you how you were might really help ease the sense of isolation.

So I decided to refer myself for these calls. I invite you to consider doing the same. I found just talking to the person who picked up the phone to sign me up was a really rather normal feeling and we even had a little bit of a laugh when they said I sounded quite young (I sure don’t feel it these days!)

Of course such calls do not replace specialised or professional help if you require that, and many of us may well find we need proper counselling as the weeks become months. If you are feeling stressed or concerned about issues relating to your situation, the Blood Cancer UK telephone support helpline is also currently open for extended hours. It has a great approach to supporting us at the current time via the phone, but also through their website news section. The organisation is regularly in touch with the government, NHS, supermarkets and even specific employers to make representations on our behalf, as are some of the other charities several of whom also have helplines.

If I can swallow my pride and call up tomorrow ask for this help maybe so can you. If you find you dont like it you can always cancel, and the lady assured me it would be easier to stop these phone calls than it was to stop those helpful food packages many of us were given initially whether we wanted them or not!