Maggy

Maggy, currently 70 years old, was 54 when she was diagnosed with chronic lymphocytic leukaemia (CLL). Due to COVID-19, Maggy shielded from March 2020 to July 2021 and has been avoiding contact with people ever since. Here is Maggy’s story.

I isolated from March 2020 until July 2021. Now, I do not go anywhere indoors or in crowds outdoors. We do not have visitors inside our home. I do not visit the hospital or the GP surgery.

Rewind to Mid-March 2020

We were alerted to this pandemic emerging and chose to shield before all the myriad of letters, texts, and leaflets from the Department of Health. On discussion with my husband, we decided to shield together so we didn’t have to change basic living arrangements in any way. He is not immune compromised. We had no idea that the lockdowns would come and stay in place for so long. Eventually, I was notified that because of my CLL condition, I was classed as clinically extremely vulnerable (CEV). With that classification came priority online slots and home delivery. Whilst useful in helping us to restrict our contact with other people, we also had limited choice and it upped the shopping bill considerably. Somehow, we were identified as in need of food parcels! After a couple of deliveries, these were cancelled as we really did not need them. However, the thought was good, and I guess was invaluable to certain sectors of the community.

The most difficult event was having to cancel our cleaner who was an excellent resource to us previously. We did miss her cheerful interactions once a week. Coupled with my CLL hospital visits stopping, we really had no contact with anyone. Eventually, my consultant set up telephone appointments coupled with blood tests at home two weeks before. Even that turned out to be problematic as my hospital is in a different trust to my GP surgery and the systems did not talk to each other.

The one bad thing about not being able to visit the hospital was my IvIG infusions stopped. These helped me to fight infections, so it meant I had to be even more careful of catching bugs other than Covid. Eventually in March 2021, a year after my last infusion I had to prepare for surgery. As a result, I did go to the hospital for a top-up of Immunoglobulin. At that visit, I was told there was a new scheme negotiated by the hospital pharmacist which meant I could give myself immunoglobulin subcutaneously. So, after one more visit to the hospital, I was taught to self-administer. I do this one a week and it takes 40 minutes. This replaces the monthly trips and five-hour treatments. Really fantastic.

As Covid became endemic and lockdown was a way of life, I was lucky enough to get a contract working as an associate counsellor on the telephone. This was a lifeline to me as it kept me occupied. Once that contract ended, I acquired another job working on the telephone with people who had experienced sudden deaths. Some of these included relatives of people dying of Covid. It was heart-wrenching but rewarding at the same time. Alongside that, I worked pro-bono for a project helping victims of global traumas. Again, mainly Covid related. My latest contract is working with victims and survivors of sexual abuse and rape. All this has helped me to feel useful. I have learnt to work online using Zoom or Teams and continue to learn new things! I limit myself to two days a week. I am after all technically retired!

Our social life has been badly affected by Covid. The first real effect was on my husband’s 70th birthday in September 2020. I wanted to throw him a party. Due to restrictions, we were not allowed more than six people in our garden at once. So, I decided on a relay system with time slots! This was fine until the weather forecast was dreadful- cold and wind. I purchased a gas patio heater. Unfortunately, the gas cylinder ordered did not materialise. So, my husband’s friend went to a supplier and purchased another. Trying to light the massive heater in a gale was not easy! Coupled with having to supply guests with throws and blankets. However, it worked! We managed a subdued and freezing celebration. The photos resembled a ragged bunch wrapped in throws. But he had a party!

Then came Christmas! All alone just the two of us but we did make the effort. The first time I felt no pressure to do all the things and see all the people. It was good. We spoke to people on the phone but no parties, meals out, or visits to people’s houses. Presents were delivered to doorsteps or swapped in car parks. But it was a very peaceful time.

We did nothing unusual but work wise I picked up a few self-employed contracts which kept me busy. I also used existing skills to diversify into supervision with students which meant I could use my expertise to help others. This also gave me an opportunity to do some pro bono work for an organisation working with people affected by global trauma. It would have been easy to say I would give up work because I had to give up face to face appointments. Instead, I embarked on a learning curve, steep but beneficial. My work kept me occupied and my brain active. It also gave me a focus away from being isolated. Mine and my husbands’ relationship was strengthened by spending time apart in the house as we have enough space to do that.

Come Spring and the garden got a lot of tender loving care. As things opened, we did venture outdoors keeping away from crowded places like cafes and pubs. We did find a few places that served coffee outdoors and began to feel normal again. Friends visited us in the garden and vice versa. August saw my 70th birthday and we arranged afternoon tea for 12 of our closest friends on the grounds of the hotel where we got married four years ago. Lovely to see people but I missed the hugs. It was a vast improvement over the windswept September 70th party.

We even ventured away for two nights in September to Whitby. A very small pub with socially distanced dining room which we risked. Again, nice to do something normal and we were extremely lucky with warm weather. Since then, we take days out walking in remote places with our little picnic basket! Sadly, the weather now has curtailed those days, but I have managed to attempt a sponsored walking challenge for the Maggie’s Centre. When I visit the hospital- a rare occasion nowadays, I love the tranquillity the centre at Jimmies in Leeds offer. The medical treatment there is fantastic too and instead of face-to-face visits, I get regular phone calls from my consultant. He arranged my immunoglobulin infusions at home which are so essential when we have no immunity. Sadly, I have developed no antibodies in response to Covid jabs – I just hope my T cells are awake! The development of antiviral drugs and possible treatments continued, and I feel less threatened now they are there in case I catch this dreaded virus. However, if we continue to keep our distance hopefully, I won’t need them.

I get my support from a lovely international group of cancer patients- Blood Cancer Uncensored. I write for them but also take part in weekly Zoom meetings and have made some real virtual friends. We support each other. Professionally, I have monthly clinical supervision meetings on Zoom. I also have weekly personal therapy by Zoom to keep my sanity. It’s ironic that the therapist lives only in the next street, but we haven’t met in person yet!

Spending Christmas shielding was the only way to avoid transmitting Covid-19; if you don’t come into contact with people, you reduce the risk of catching It. Christmas has become like any day of the week, with no visitors, just me and my husband. It is especially important for me to avoid catching Covid as I have no immunity or antibodies, even after three vaccinations.
It’s tough continuing to shield whilst the rest of society opens, especially since they don’t understand shielding and why it’s necessary for some, but it’s better than dying of COVID.

My mental health has been significantly impacted by my time shielding and my lifestyle has been changed beyond recognition. The way I have survived Is by the support of my husband who has shielded with me. He has been my lifeline. It has strengthened our relationship and made us more resilient. The other way of coping Is by having the control to work from home online and on the telephone two days a week. I do not have to work but choose to, so I have a focus. I have also continued studying to keep my brain active. Additionally, I used Leukaemia Care’s webinars and the resources on their website during my time shielding and continue to do so – I’d recommend these to other leukaemia patients, shielding or not.

If I could receive one gift this Christmas, it would be to see my family In New Zealand. When eventually travel is safer I dream of a long-awaited cuddle.

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