Your COVID-19 stories
People like Elspeth explain how they are coping at this challenging time.
Elspeth | Nichola | Mike | Angela | Roy | Bel | Maria
Elspeth
‘I was diagnosed with Hodgkin lymphoma in July 2019, and had finished my last course of chemotherapy treatment just before the start of the UK lockdown due to COVID-19. However, once the lockdown started I felt like I’d fallen off a cliff. I was so used to the routine of seeing my incredible cancer nurses and speaking to my consultant whenever I had questions. There are things that I would like to discuss with my GP and oncologist which are so much easier to talk through by seeing them face to face, but at that point I felt I couldn’t even go the hospital if something was wrong through the fear of catching COVID-19.
This is where Lymphoma Action have stepped in to fill that void of support. When the twelve-week shielding period was announced for people like myself at high risk of severe illness from COVID-19, I initially found the information a little ambiguous. However, I knew the first place that I could go to for clarification was to Lymphoma Action’s website, and I knew that if I picked up the phone to their helpline that someone will be there to support me too.
I have also recently joined the charity’s UK wide support group on Facebook, Lymphoma Action Support UK. Being able to connect with others in a similar situation has been so helpful. People can share information and tips about coping with the current situation, as well as their thoughts and emotions about their diagnosis. It is also a place to go to generally have a good chat, which is so important whilst local face to face support groups are not running. I feel I am still surrounded by a number of people who all know the sort of journey that I have been on and what’s to come.
I can never thank Lymphoma Action enough for the help they have given me. I remember sitting in the doctor’s room, nearly a year ago now, hearing the words ‘you have cancer’ and I was handed Lymphoma Action’s book about Hodgkin lymphoma. From that day, the charity has been the most incredible support system and it continues to be - now more than ever.
When I clap every Thursday, I am not just clapping for the doctors and nurses who saved my life, and the key workers who are keeping us going. I am also clapping for Lymphoma Action.
I hope I can be of support to others like me, who may be shielding for some period of time. I was actually self-isolating before the outbreak due to my condition, but have found this to be a time of opportunity to try new things. Lymphoma is physically exhausting, and I just don’t have the energy I used to, but I have got back into cross stitching, sewing and reading, and just generally taking the time to focus on myself. My advice to anyone having to shield right now is to find something you enjoy, or been meaning to try and go for it! I have also found it useful to write a journal of how I am feeling. Writing your thoughts down or just saying them out loud can be so beneficial – say how you feel, and let it all out, as there is no shame in it.’
Nichola
'I was diagnosed with follicular lymphoma in January 2017, when I was 42.
I am currently on active monitoring with four monthly appointments. My four monthly appointment was completed over the phone. I had already had my blood taken, so these were discussed over the phone. I don’t think I could expect any more than that and was really grateful for the call.
Because the consultant couldn’t check for lumps on that occasion, I’ve noticed that I have started checking for lumps a lot more, which isn’t a good habit to get into on a regular basis.
I have two daughters (age 11 and 14). They don’t understand why I can’t go out for daily exercise with them. We have had a good conversation and they know they can ask me anything, but one of the hardest things for me is having to go into more detail. I worry that too much would overload them, but they are already worrying and won’t leave the house. I have lots of time though, so small steps.
I am also a key worker - an Assistant Head in a primary school. I feel very useless not being able to support my colleagues. It frustrates and really angers me that the lymphoma has stopped me doing this.
I sometimes forget how much it affects my husband. I think you get on with life and keep busy and sometimes, you forget for a while. Then something like this happens and it comes back, slaps you hard across the face and reminds you it’s still there and all of those worries and fears start running around your mind again, especially at night when you just want to sleep.
My husband worries about going shopping and passing something on to me. It must be hard for partners. My youngest daughter is in year 6 so is very upset about missing it. Therefore, I’m trying to make sure she is ok as well.
I can feel myself distancing from friends again. Sometimes this happens. I don’t know why it is. I’m ok over the phone and by text but the thought of a video call (especially with work) really panics me. Funny isn’t it? With family it’s fine! When I’ve spoken about feeling down, a couple of friends have said we are all in the same boat. I get why they say that and completely agree - this is impacting us all in so many ways - but that makes me feel like I can’t share. Does that make sense? I think that’s quite normal with people’s general understanding of lymphoma.
Morning is working from home, afternoon is cleaning and having fun. My house will be spotless by the end of this! I’m thinking of starting a new hobby to help me relax. I prefer to stay busy otherwise I think too much, but this is going to be a long twelve weeks so I need to find something to help me relax, which in turn may help me sleep.
Although I’m shielding, my husband is still going out when he needs to, although he really worries about this. I have become obsessed with trying to get delivery slots. This really stresses me out and I hope supermarkets get hold of the government information soon so that I don’t have to sit up late waiting for slots to open. I have lots of people around to help but I like to be independent and hate relying on others. But I think this time I may have to give in!
As someone with lymphoma, the situation with coronavirus is making me feel so vulnerable and out of control, which is really overwhelming at times. I’m not that person, or so I thought. Being told you have to shield yourself is very hard and so very scary! I’m trying to find things I am in control of to counteract it, but that’s sometimes easier said than done.'
Mike
'My name is Mike. I'm 28 years old, married with a 1 year old and my wife is about to give birth to our second child via c-section mid-April.
I was first diagnosed in January this year, but since then my diagnosis has changed several times. Originally, I was told I had a ‘diffuse large B-cell lymphoma’, but in February my medical team changed my diagnosis to ‘primary mediastinal large B-cell lymphoma, grade 2'. I have only just started chemo and am due to have my second round this Friday for 5 days as an in-patient.
As my wife is also heavily pregnant, my medical team have been amazing in making sure I am going to be able to attend the birth and fitting my chemo treatment around this.
However, with the COVID-19 now ongoing, this is adding to the stressful time we are having.
We have both been isolating and getting family members to run to the shops for our essentials. We also have to think of other ways to occupy our daughter, where normally we would be able to visit parks and family members, we are no longer able to do this.
The following weeks and months are going to be very strange for both of us, especially if the measures are not lifted.'
Angela
'My name is Angela and I’m 69 years old. I was diagnosed with follicular lymphoma in October 2018 and am on active monitoring, being seen 3 monthly. In the past 6 months there have been some changes in my enlarged nodes and my team were contemplating maybe treating this year.
I’m coping well with the current situation, partly because my husband is on ‘the list’ too so we are shielding together and partly because we have a really good, close family network. We are also fortunate that we arrived back from a fabulous holiday in Sri Lanka just when the UK went on ‘lockdown’ so we started this situation feeling rested and fresh.
I’m normally very active, walking 10,000 plus steps a day and going to fitness classes 4 times per week and so I am missing that. I’ve done an on-line Facebook Live yoga class with my normal yoga teacher, but mostly my exercise has been painting the house. Normally the house wouldn’t get this much attention because I’m too busy doing other things. I belong to several groups such as craft groups, a pudding club and a book club with my ex work colleagues. We are all keeping in touch though via WhatsApp chat, emails, text messages and Skype.
Everyone in our local family, apart from our daughter-in-law, is still working so rather than taking up their time we tried to get food deliveries without much success. We managed to get one delivery, but half of the stuff was out of stock, so our family stepped in. They shop for us several times per week, and we’ve not had much trouble getting the basics, apart from bread flour, which we can’t get from anywhere for love nor money. We never buy bread and have made our own for years so are hoping that we’ll be able to get some soon. Our daughter has also shopped for her elderly neighbours and her partner’s mum too as all are self-isolating. We are also thankful that we started having recipe boxes delivered earlier this year so we have the fresh ingredients for 4 meals for 2 delivered each week. A godsend in these times!
We should have had a family meal out in celebration of my mum’s life last week, as she died earlier this year, but that was obviously cancelled so we got together virtually and played silly games and raised a glass from our living rooms. We had a lovely FaceTime with our son and grandchildren who live on the south coast too.
I’m an ex secondary-school teacher and have kept in touch with lots of ex-students and colleagues on Facebook so have spent a lot of time social networking: sharing funny stories and jokes; joining in the rash of photo posts to lighten the mood - such as photos of beaches, landscapes, pets etc - sharing kind deeds and happy events, and other optimistic things.
We always get our prescriptions delivered so that’s not been a problem, although I did worry about the Hydroxychloroquine that I take for my Sjogren’s as there is apparently a shortage due to it being used to treat COVID-19 in Italy and France. It was fine though. They delivered enough to last until the end of June.'
Roy
'Hello, my name is Roy and I was diagnosed with high-grade non-Hodgkin lymphoma (NHL) in June 2018. I had previously been treated for testicular cancer in 2006, so the lymphoma was my second cancer.
Following treatment with R-CHOP chemotherapy, I have been in remission since January 2019 and am currently on four-monthly follow-up appointments, this having changed from the initial three-monthly appointments.
It being my second cancer diagnosis, I was in some ways more prepared for it than I had been the first time. I had been feeling unwell for some time prior to the NHL diagnosis and whilst the cancer diagnosis came as no surprise, the type did, as I knew nothing about it.
I was treated with R-CHOP chemotherapy, which I have to say was much worse than the BEP chemotherapy I had undergone previously. But my recovery from the treatment went better than I expected and my fitness returned fairly quickly. I have always enjoyed exercise, such as walking, cycling, swimming and kayaking and tried to look after myself.
The Covid-19 scenario has of course brought with it severe limitations due to the possible effect of that ghastly virus on my lungs due to possible immunodeficiency. Thus I now have to remain at home. Just as well I have a workshop and plenty of hobbies. I also have a cycle turbo-trainer, which allows me to keep my legs and cardio-vascular system working hard.
My wife has elected to self-isolate with me as the prospect of us having to undergo a virtual-divorce every time she went to the shops is one we are not inclined to contemplate!
I registered as ‘Extremely Vulnerable’ and received the first of the food parcels and local authority supplies as we were having great difficulty obtaining home-delivery ‘slots’ with supermarkets, though I have now withdrawn from these. Despite the promises made by certain large chains I have as yet to receive the communication advising me I am on their list for preferential deliveries; maybe it will arrive soon. If not then they really need to get on top of this issue. Those not so categorised can go to the shops. I cannot. I wish I could, as I am more than physically capable and have no desire to be dependent upon others. Meantime we are managing with such home deliveries we can arrange alongside asking neighbours to purchase the occasional small items for us.
I still struggle to comprehend just how we got into this awful situation and can only try to keep busy, keep positive and avoid continually watching the news, the media seemingly intend upon painting a negative picture all the while. ‘Good news is no news’ used to be the maxim I believe?
I decided after my ‘remission’ diagnosis to crack-on with my life and do as much as I can. I am always mindful of my mortality and the chances of getting yet another cancer. For me this virus could not have come at a worse time and I don’t want the virus to deny me the chance to enjoy my life whilst I am able to do so. Having lost two long periods of time through cancer treatments I am very sensitive about losing a single day, let alone many months.'
Bel
'I was diagnosed with diffuse large B-cell lymphoma last year, which unusually manifested in my ankle and leg. My treatment started April 2019, with six rounds of R-CHOP chemotherapy and four and a half weeks of radiotherapy. My treatment finished in September 2019 and I had a clear scan. I am currently on 3-monthly check-ups with my oncologist which usually would take place at the hospital. But due to the coronavirus my consultations are now over the phone.
My husband Martyn died last year from chronic myelogenous leukaemia (CML). It happened when I was between the first and second round of my chemotherapy. So I'm here on my own with two dogs and five old moggies.
My freezer and store cupboards are pretty well stocked. It will be getting hold of fresh fruit, veg, bread, milk and hand soap that I expect will be the most difficult. One of the local rugby supporters has been texting when he's going shopping. It’s a bit ad hoc, but today he's dropping off a loaf and bananas. So I'm reliant on the government food box. I had a call yesterday from the council about the community help hub they are setting up. Believe it or not it includes dog walking, so my two will get out.
I'm trying to work my way through Martyn's stuff now; I couldn't face doing it before. I watch a fair bit of telly, catching up on stuff I've recorded. I also follow rugby online and am enjoying re-runs of old games.
I follow a few Facebook pages which keep me in touch. I do FaceTime with my niece in Australia and text or phone my sister-in-law. I'm still using my local Maggie's centre for support, which is now online or on the phone.
I really struggled when Martyn died last year and was in a dark place for quite a time. I have got through this now and it's made me a stronger person to deal with the isolation. It made me learn the difference between being alone and being lonely. Being stuck here is not a problem mentally for me, as I have got used to seeing hardly anyone since my husband died. But I do miss meeting up with people at the Maggie’s centre, which was a weekly trip out.
Maria
'Hi my name is Maria. I have Waldenström’s macroglobulinaemia. I finished my R-CHOP chemotherapy last April and am in remission. I am back on watch and wait every 4 months.
I was last seen in January and my next appointment was to be in May, but I have already been told that my next appointment has been put on hold.
I worry about my family. My son, his wife and 4 year old daughter live in Preston. As I live on the Wirral I keep in touch with them via WhatsApp every day. My daughter and her partner live in Southport. They are both hospital healthcare assistants and are on the front line. I keep in touch via WhatsApp and phone. It’s reassuring to hear their voices.
My husband is a mobile response security officer and travels all over the north west. His company says they are key workers and so he has to work. It’s really hard for us to maintain social distancing. What if he gets it? How do I self-isolate then? I wish the government would let people who have partners who are at risk stay at home as well. My husband is worried when he goes to work that he will catch it and give it to me. I also worry about my pets, as if my husband and I have to go to hospital, who would look after them?'
If you would like to share your experience, please email publications@lymphoma-action.org.uk