“It all began on 4th December 2020 when I felt a slight ache in my back. It was followed by a gripey ache in my left side. I felt unwell so I went to bed at 5:30pm and ended up sleeping right through. Thinking back, I also had an irregular cough, and the sleeping makes me realise that I was lethargic. It stayed this way until I was diagnosed. I did contact the GP after five days, although I wasn’t concerned as I’ve always been healthy, but a friend pressed me into calling 111.
It was at the height of COVID-19 restrictions so getting to see a GP was almost impossible.
The GP called me back and prescribed medication for gastritis, but also, thankfully, ordered a blood test. Circumstances, again fortunate, led me to having the test that evening.
It was just 10am the following morning when my GP called me and asked me to come in. My heart literally sunk; my stomach tumbled. Somehow, I knew it was serious. Once in with the GP I answered no to most of the questions she asked which were regarding any symptoms I was experiencing. However, that very same evening the horrid night sweats started. It was as if someone had thrown a bucket of water over me. Worse than any menopause sweats. It really upset me. I also noticed lesions on my tongue.
I was told I needed an urgent referral. A telephone appointment was made for me for 16th December – one week after my GP appointment.
Following further blood tests, I was given a bone marrow biopsy – I cried throughout the whole thing. It was at this appointment, with the nurses wearing Blood Cancer lanyards, my little finger being black and blue and being told my sample was going to UCLH, that I knew this was very serious.
It was then less than three weeks from that initial pain that the consultant called me, on 23rd December, and said you have ‘acute lymphoblastic leukaemia (ALL). Pack a bag, you need to come in for platelets and I’m transferring you to UCLH today.’
It was awful. I was alone. I arrived at midnight – scared, shocked, and terrified. As the COVID-19 restrictions had been tightened up, (this was the Christmas the Government decided there could be no mixing) I wasn’t allowed to have any one with me. My husband and two daughters were distressed too.
The next morning I was started on dexamethasone steroids. I spent Christmas alone, in isolation and with COVID-19 rampant at that time, I found it very tough. I was allowed one visitor per week. All the medical team at UCLH were outstanding. The next stage was for me to start on the UKALL14 protocol, but I didn’t want to know how long my treatment would take, nor my prognosis, at that time.
I suffered with many infections and allergies and terrible fatigue set in as well. Yet every time the medical staff reassured me. They got me through. Every hurdle was overcome. At one point all treatment was withdrawn as my liver reacted badly to one chemo drug, but they got me better and found an alternative.
I had to add osteomyelitis (inflammation of the bone/bone marrow due to infection) into the mix, as well as a spell in ICU, a long-infected blister, and the removal of a uterine polyp. It was a lot to deal with as well as the leukaemia. The lasting side effects include bone necrosis, but I’ll take that over the alternative.
I owe getting through that stage of my life to my friends, family, co-workers, doctors, nurses, healthcare assistant staff, and having my faith. They all supported me and that meant I came through this. There were dark times but also good times too. I cannot express how much the support has meant to me from everyone.
This was me three years ago, and since then I was admitted locally on 12th December 2021 with a soft tissue infection (that sadly became osteomyelitis). Whilst in hospital I contracted COVID-19 so again was isolated from everyone and feeling very scared as I was not with my specialist team. However, my amazing Professor took time out to call me and reassure me as best she could. I’ll never forget her kindness and over and above care.
I’m now on the last leg of ‘maintenance’ treatment. I had my final i/v chemo in October 2023. My final tablets finish at the end of this year. I’m in remission.
I feel grateful, yet nervous, but I intend to live for today. Never give up hope. So many advances have been made over the last 10 years. Early detection is key, and so it’s very important, especially to help this, to always go for a blood test when it is offered.”
If you or a loved one needs advice or support regarding your diagnosis, please get in touch. You can call our free helpline on 08088 010 444 and speak to one of our nurses. Alternatively, you can send a message to our team via WhatsApp on 07500 068 065 (services available Monday to Friday, 9am – 5pm).
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