This is a place for me to share my experience of living with some one who has been diagnosed with Chronic Lymphocytic Leukaemia (CLL).

As my husband -S has reached the point where he needs treatment I wanted to log my experience as a wife of someone living with CLL . Posts will be a mixture of recent events and retrospective. they may not be in Chronological order. I will also add links

Diagnosis

My husband has Chronic Lymphocytic Leukaemia- CLL- he was diagnosed by chance back in 2016 although they think from the symptoms he used to go to the GP about he has had it since 2012. One of the symptoms is fatigue and getting exhausted easily. He will fall asleep in the afternoon or be in bed by nine. Way back in the 2010-s my husband started getting fatigued. He went to the doctor numerous times, each time was told it was stress. Occasionally a blood test was done but nothing was spotted. In December 2015 he saw a locum doctor, by now he was also having hot and cold flushes. The locum did a full blood workup and just before Christmas he was advised he probably had Leukaemia but it would need to confirmed with a specialist. We waited for the appointment to come through and tried to put a positive spin on it. My dad had Leukaemia in the eighties but he recovered and lived another 20 years. 

In January of 2016 he got the flu. He was so ill that we had to call a doctor out. He was barely conscious, because of his diagnosis and not yet had the specialist appointment this was the first terrifying time. He was taken to hospital and admitted. He did have the flu and due to his unconfirmed diagnosis they did all the tests including a bone marrow biopsy to check it wasn’t the Leukaemia that was causing the illness. Thankfully it wasn’t but he was put in a single room in an oncology ward. This confirmed he had CLL. This was also the first time he was told the phrase “it’s one of the best cancers to have” no one wants to hear that. This began our watch and wait journey with 4-6 monthly appointments 

COVID & CLL

My husband has Chronic Lymphocytic Leukaemia- CLL- he was diagnosed by chance back in 2016 although they think from the symptoms he used to go to the GP about he has had it since 2012. One of the symptoms is fatigue and getting exhausted easily. He will fall asleep in the afternoon or be in bed by nine. He has been double vaccinated and had the booster. He still wears a mask when out and about and at work where he works mainly outside. After the second jab his glands became swollen, this is also another symptom of CLL when run down or fighting an infection. He got it checked and was advised that he had a bad reaction to his second shot and that the consultant had heard of others with the same.

On the evening of the 13th October 2021 he had his booster shot. Around the 21st October his glands started swelling followed by a bad cough and cold. As usual he was fatigued, we thought this was a reaction to the vaccination again but to be safe we did a lateral flow test on the 27th which was negative. In-between his bouts of fatigue he was alert, chatting and watching programmes, this led us to further believe it was a reaction to the booster. Over the next two days he became weaker, he had put off going to the doctors as he didn’t want to go to the surgery or end up in hospital as he believes he won’t come out. The doctor finally saw him Friday evening and he was sent straight to A&E. He is now in a COVID ward dehydrated determined not to die. I am at home and tested positive for COVID, I am not as bad as my husband, I have a horrendous cough, sneezing, a rash and a cold, I am also losing the taste of things. I am annoyed with myself as from Wednesday 27th my coffee was tasting funny but everything else tasted fine, which as my daughter pointed out change in taste can be one of the first signs. 

The thing is we are both double jabbed, have only recently started going to a supermarket once a week to get some shopping, always wear a mask, use hand sanitiser, keep distance as much as possible. I work from home and my husband works mainly out side and still maintains social distance and wears a mask. So we are perplexed as to how and where he may have got it. The hospital think he may have picked it up when he got his booster shot. I am currently unsure if I will have the booster shot as if I recover from this I do not want to get it again.

If this encourages one person to call their doctors surgery or 111 sooner rather than later to nip it in the bud as they say. then it helps. We didn’t because some of the symptoms were normal non covid ones for my husband. Since I was a child I get an annual cough so didn’t think anything of it especially as we were so careful. I am still glad I had the vaccine as I would be a lot worse without it. Right now I am just praying that he makes it out alive. Stay safe, wear a mask, be kind to one another

UPDATE

He is still in hospital on a number of drips and on an experimental COVID drip he is lucid and is better although last night he took a severe dip. I am feeling a little better but when I am, I forget about some of the symptoms I have with it and it comes back and hits me with a full force. 

My symptoms have been : Cold and flu type symptoms, cough, change of taste, backed nose, sneezing, runny nose, severe sinus pain- like an earache pain in your nose, hot flushes, and a headache which I originally thought was a migraine and the breathlessness.

02.11.2021 . Husband is home, still tired and breathless, has a cough he is resting but so much better, he just needs to drink more water. I am feeling a lot better today, cough has finally lessened and headaches are less. 

08.11.21 Husband is much better, he is drinking more which is good. We both still get breathless intermittently for no reason, have a niggly cough and dry throats. He still gets tired which is a mixture of his CLL and the Covid-19. We have been told these could last weeks. I also have the change of taste. I am longing for a normal tasting coffee. We are both very thankful we are over the worst 

17.11.21 We are definitely better, I still have the odd bout of breathlessness, a dry throat and waiting for the taste buds to come back, Husband has the same but still has the tiredness and a cough. Thank you for all your kind messages. Still can’t work out how we got it which is very annoying but we survived, for which we are thankful

30.12.21 Husband had a throat infection, luckily we called the doctor and they prescribed some antibiotics which resolved this. His glands are still swollen and he now has to have regular PCR tests with the immunology department until there are no more COVID cells in his tests for 3 consecutive ones. This is because he is immunocompromised (his CLL). Silver lining he is still alive .

Symptoms The two main things my husband suffered with before treatment and ongoing are the hot flushes and the tiredness. He will be fine then feel extremely hot but not have a temperature, fans don’t always cool him down. One side effect of this is that he can sweat a lot. It also means he can’t sleep properly at night as will wake often. The other is the tiredness/fatigue which even when you explain to people they don’t get it. He will be fine, be alert, active then all his energy will go and he is exhausted and often will be asleep with in minutes. This means especially since he has needed treatment, it ends up in a cycle of not sleeping properly, getting up early, still feeling tired, have a good few hours, sleep most of the afternoon, awake for a few hours then sleep again.! If we are going to watch something of an evening I have to ask how he feels so know whether to watch a shorter or longer item.

November 2022 One thing people don’t realise about living with someone who has a chronic illness is the worry you carry with you about them . When he’s had treatment , is feeling a little low and falls asleep quietly, you watch him to check he is still breathing. When he has his infusion you’re on tenterhooks in case he has a reaction to it and something terrible happens.