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John's Story

John’s Story

Published 30.10.20

My diagnosis and realisation of my symptoms was somewhat mixed in with some intensive chemotherapy I was undertaking at the time for a bone marrow cancer called Myeloma. I spent around 3 1/2 weeks in an isolation room where my immune system was essentially killed (neutropenic) due to the high dose chemotherapy I was receiving. This process alone gives a substantial kicking to the body where I felt absolutely exhausted, nauseous and very weak. I was discharged through March with enough of an immune system to allow me to shield at home, as this was the period where the UK was going into lockdown.

At home my nausea was horrendous, I could not eat, had very broken sleep and fatigue played a huge part. Now during my hospital stay I had a pulmonary embolism on one of my lungs and was taking daily Clexaine injections to break the clot up. This had made my breathing laboured and this also came with a diagnosis of atrial fibrillation, high blood pressure and an irregular heartbeat. These symptoms continued whilst at home, where I only remained for a week.

I had a raised temperature and after monitoring this I spoke to my acute oncology team and was blue lighted back into hospital. At this time I was being treated for nausea and an infection, the type of which was not mentioned. I managed to get relatively steady after a week in another isolation room and as I was being discharged a comment was causally thrown in “oh by the way, you tested positive”, I asked what for and only then did they mention I was covid positive and needed to self isolate in the house away from other family members. Luckily my wife is a nurse, who is also going through her own battle with cancer, so we had everything sorted at home in no time at all.

Now the main thing hindsight has allowed me to do, is to look back at my symptoms. As I was recovering from some industrial chemotherapy I assumed everything I was experiencing was due to my cancer treatment, as such I think I downplayed things like breathing difficulties thinking they were all port of expected cancer recovery, these were discussed with the haematology team on my weekly telephone clinics. My failure was to be able to unpick covid symptoms away from cancer recover symptoms. For example, at rest in bed I could breathe relatively fine, if I went to the bathroom I was light headed and found I really struggled to breathe. I usually cut short what I was doing and literally collapsed back onto the bed panting for what seemed around 20 minutes. I think I remained covid positive (tested at hospital) for around 7 weeks.

My cancer treatment recovery can normally take 6 months but as time plodded on I was starting to think some of my issues must be covid related and my haematology team agreed, noting that this was still a new disease to most. My breathing struggled on for months and whilst it is much improved 7 months later, I still get out of breath on occasion walking up a flight of stairs. My primary bronchi used to develop a sharp pain when I inhaled a lot or coughed, this bit has thankfully subsided. Other things I am left withy relate to muscle pain, inflamed joints and ligaments and small tremors. If I sit for a while my left thigh muscle is incredibly painful, forcing me to return to bed to give it support. My joints are still stiff and painful and in certain positions explode with pain, the main joints are my hips and knees. I cannot take anti-inflammatories due to my cancer and I am maxed out already with most other painkillers, with tramadol held in reserve.

Only in the last month or so have I been made aware of the ‘long haul’ version of covid, which helps me look back and bring everything into perspective. I can now usually separate my covid pains and cancer pains. My breathing is better but I still have issues and combine everything together I am very limited on what I can achieve. Most days see with long periods of fatigue where I achieve nothing more than relocating from bedroom to downstairs.

I am unsure how long these issues may continue and have become aware of possible heart damage as being another post covid issue, with atrial fibrillation and family heart issues it all adds to the mix. I get frustrated at time but not down, as my shortened life expectancy due to my cancer has refocused things in life for me over however many years I can squeeze out of this.

I have no idea how I caught it but I was aware that whilst the hospitals were just starting to lockdown through March, staff were not routinely masked. Not blaming anyone but I was immunocompromised at the time, so I put this down to bad timing.

Thanks for listening.