Rewind to Mid March 2020- we were alerted to this pandemic emerging and actually 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 CEV- clinically extremely vulnerable. With that came priority online slots and home delivery. We did avail of these which, whilst useful in helping us to restrict our contact, also limited choice and 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 consultation set up telephone appointments coupled with blood tests at home two weeks before. Even that turned out to be problematic. My hospital is in a different Trust to my GP surgery and the systems did not talk to each other. Luckily my consultant found a way round it by contacting another haematologist in a hospital within the same Trust as my GP. and has set up for her to forward my blood tests to him. Unbelievable in the 21st century that two hospitals less than 40 miles apart don’t have computer systems that 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 actually 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. It meant the need to go to hospital. So after one more visit 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 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 . Still involved with that. 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! 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 wragged bunch wrapped in throws looking more like refugees than party goers. But he had a party!

Then came Christmas! All alone just the two of us but we did make the effort. Actually the first time I felt no pressure to do all the things and see all the people. It was actually good. We spoke to people on the phone but no parties, meals out, or visits to peoples houses. Presents were delivered to doorsteps or swapped in car parks. But it was actually 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 clinical 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. Our 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 TLC. As things opened up we did venture outdoors keeping away from crowded places, 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. In August I was 70 and we arranged afternoon tea for twelve of our closest friends in 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 wind swept September 70th party for my hubby in 2020!

We even ventured away for two night in September to Whitby. We visited 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 tranquility the Centre at Jimmies in Leeds offers. 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, just hope my T cells are awake! The development of anti viral drugs and possible treatments continued apace 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 actually lives only in the next street but we haven’t met in person yet!

The hardest part is having family abroad in New Zealand with little hope of visiting them anytime soon. But that’s where FaceTime comes in- play sessions at a distance with my granddaughter are lovely. When eventually travel is safer I dream of a long awaited cuddle. Meanwhile I can honestly say Covid has made my marriage stronger!