The hospital admission following my chronic lymphocytic leukaemia (CLL) deterioration and the tests that showed my bone marrow was 80% CLL, meant I began shielding before we all got to understand the implications of that particular ‘S’ word.
Almost three years, on, and my family and I are professional shielders. We are lucky that we have a porch and have instituted an “airlock” system so that only OUTSIDE clothes and kit goes outside, and only safe, indoor things are used indoors. All my family use this system, including hand sanitiser at the door, and spray disinfectant if necessary. Getting shopping is stressful, since slots are hard to come by, and not all the shops deliver to us; we finally now have a system that uses 4 different supermarkets when we can get slots, which means shopping is ordered well in advance. But it is hard to be spontaneous, or just get a forgotten or unavailable ingredient.
My journey to having three doses of the COVID-19 vaccine was also difficult, since I was too ill to be vaccinated in the first wave, and still don’t know whether I am even protected by the jabs I have had – I read that a lot of blood cancer patients don’t generate effective antibodies. Unfortunately for a guy whose family motto is ‘the day my ship comes in, I will be waiting at the airport’, in my ongoing four weekly blood monitoring, it was discovered I had another cancer. They told me I would be vulnerable with a less than average immune system, so Squamous Cell Carcinoma was diagnosed after a PET, CET, MRI and Ultrasound. I won’t go into detail about how many times I had a camera down my nose into my throat, but I have been 8 months nil by mouth, PEG fed, and have overcome 6 weeks of radiotherapy. I’m still maintaining four weekly blood tests as the ibrutinib I took for my CLL was ‘parked’ as it could not be administered by the PEG. Due to the cytotoxic nature of the ibrutinib, even though I’m on the eating journey of pureed foods, I can’t risk the ibrutinib getting stuck in my throat or diverted into my lungs.
The emotional impact of this was felt hardest by those I love. My family were plunged into shielding and continue to assist me with rigorous distancing, shielding, non-participation in the world. My children are still young (15 and 8) and have missed 3 YEARS of parties, and normal activities, although they have had to miss even more during the official shielding. All of that makes me sad. My actual mental health intervention (cancer-related counselling) was due to psychological issues with not eating but perhaps that is another story.
Christmas shielding part 3 awaits us: no visitors, minimal family activity, no fetes, parties, Christmas fayres, just our newfound ‘wonder around the village looking for lights hobby’! It’s actually frightening to me that there are so many Christmas fetes and fayres this year, and so many people taking advantage of our location as a tourist hotspot. For us, even the children going to school is very high risk, as their bubbles are relaxed, and they come into contact with many other children who are almost certainly not being as careful as we are. I find it horrible that people generally assume shielding means old people, and demand the right to mix freely and travel for holiday and mental health reasons because they think vulnerable people means people who will die soon anyway, when my children also have mental health needs, and it is almost impossible to work out how to safely meet these. I am at increased risk, and they feel the risk of causing me harm, or even death. We still cannot have visitors, so, will feel mostly shut away from Christmas.
Shielding is essential as I am subject to being plunged into a medical crisis from infection and Covid-19 is taking its toll on fellow CLLers, as we have considerable infection vulnerabilities.
While I am jealous that society is pretending all is well, I watch daily numbers like a hawk. Here in Wales, we get daily county numbers; my county is very tourist driven so the peaks and troughs of holidays are worst around here. I feel shielding is absolutely essential. I am very grateful that my family are doing their utmost to help and I still worry and am sad that so many opportunities are closed to them. I am also very grateful for Leukaemia Care for giving my wife a chance to participate in the virtual London Marathon, able to raise money for Leukaemia Care who has been a boone to my survival and for her to undertake a much-desired challenge, and we are all very proud of her.
The joys others have at returning to a new normality are bittersweet to me. I know there is not a lot of understanding about Covid’s continued effects and that people accept 100 deaths a day as some sort of ok thing – I find this saddening and annoying. We shielders are now hidden, forgotten, more isolated as we are a minority and less enabled because the support mechanisms put in place have mostly been dismantled. There is little understanding of how the people shielding are just as human and as at risk from the mental health rigours of not going out or seeing people etc, we are just seen as acceptable collateral damage for them to be able to have their ‘normal’. This is a shameful way to see others.
Shielding has in effect closed me down. It is not good for me and it is certainly not good for my family, its impacts are stretching well into the future, creating a building sense of guilt and adding to the overall frustration of dealing with a serious condition and a social nightmare. The inability to ever see a way back to normal things, like going on holiday, or taking the kids to do something fun to get some respite from all the stress of illness, and the bleepy machines and tubes etc at home is grinding and damaging to all of us. The fact that there seems to be no end to this makes it even harder. When my daughter was 6, she didn’t have a birthday party because having a group of people in the house was too dangerous for my immune system, but we told her, it would be better by next year, so she could look forward to it. MY immune system probably WAS strong enough by her 7th birthday, but, that was in 2020, and by 2021, neither I, nor the pandemic were able to facilitate such a thing for her, and now, we can’t realistically look forward to any such things, in any time scale. It impacts on all of us
I no longer get to spend ANY time doing adult or date type activities, because we can’t go anywhere, and I can’t eat, so, special meals are also out. This impacts my relationship, and my lifestyle is such that I work from home, but otherwise, I am attached to my PEG feed, and ONLY go to the hospital. I don’t even think it qualifies as a lifestyle. And that tips over to my family too.
My wife has used Leukaemia Care’s message boards and finds them incredibly helpful in overcoming the isolation that shielding brings. I also do phone the Leukaemia Care nurse from time to time if I am worried about something. The helpline was a godsend in that it gave me focused advice and information on my specific leukaemia (CLL). It gave me access to a nurse for more generalist advice and some very specific questions, they rang me back if they needed to get very specific information. It serves as a comfort shield and has been a boone to my peace of mind.
The assurance of being able to speak to a nurse is comforting and a massive help. The lobbying on behalf of clinically extremely vulnerable (CEV) people was heartening, the flying the flag for our specific vulnerability is absolutely essential. Access to Leukaemia Care’s Financial Hardship fund, to allow my family to come from Wales to see me in hospital in London, was a crucial step in minimising the worry of an urgent unexpected unplanned admission.
If I could receive one gift this Christmas, it would be the chance for my children to do more normal things, and for them not to have to worry about me. Staying up late to make sure the 999 ambulance comes and I go safely to the hospital is not a treat. Maybe a families ‘thing’ too but Santa is rather busy!
Spare a thought for Michael and other leukaemia patients who are feeling #LonelyWithLeukaemia this Christmas by donating today.