It doesn't always go to plan. By Lisa King
Lisa is an influencer, blogger and mum from Falkirk, Scotland. She was diagnosed with Leukaemia aged 31 and is keen to share her experiences of treatment to help anyone else going through similar complications.
I was prepared for most of the usual suspects of cancer treatment side effects.
I embraced the hair loss by shaving my head straight away and accessorising my temporary baldness with bold make up and big earrings.
The sickness was unwelcome and difficult but it was also expected, so it was another thing I was prepared for.
What I wasn’t prepared for however and what I wish I could have factored in at the start of treatment were all the possible complications and delays I would face during my journey.
I was diagnosed with Acute Myeloid Leukaemia having just turned 31. It was as crushing a blow as it would be for anyone to find out they have cancer. Especially with a young family.
Treatment for my type of blood cancer involved 4 rounds of aggressive and intense chemotherapy to destroy and reset my immune system in order for it to stop producing immature white blood cells and go back to producing a healthy balance of infection fighting white cells, red cells and platelets.
As the treatment essentially wipes out any normal blood cells along the way I would need to stay in hospital for 4-5 week stretches each round to wait for my immune system to recover slightly before being sent home for a short break leading up to the next round. All this made perfect sense and although it was very difficult being away from home and my family, we knew it had to be done and just wanted to get it over with. I worked out roughly how long it would take and had a date set in my mind for when I would be finished with treatment at the end of July.
The first round was uneventful. I actually started feeling better once treatment started. I had been very poorly for the two months leading up to my diagnosis, but as a young mother I think you tell yourself that it’s just in your head and you crack on with life as you would normally.
By this point I had had a consistent migraine for six weeks, a ringing in my left ear for near enough the same length of time, was so breathless that I could barely take the set of 3 steps leading up to my front door without my head feeling faint and I felt all round horrendous.
Only after getting several infections including tonsillitis and an infected wisdom tooth, which weren’t subsiding with antibiotics did I realise that something wasn’t quite as it should be.
It still took me collapsing outside the school gates on a Monday morning due to shortness of breath to actually go to the hospital but once I was there it did not take the triage team long to take a blood sample and the haematologist to sit me down for the dreaded diagnosis.
After that, everything went very quickly. I was given a cocktail of pills to stop my bone marrow from producing any more cells and several IV blood and platelet transfusions to get me to a level where I could physically cope. I was not allowed to leave the hospital again, I was admitted as an inpatient that morning and treatment started 4 days later.
My consultant actually disclosed that she thought I would only have had another couple of weeks to live, which thinking back to it, still absolutely blows my mind that it was so close.
Once treatment started I spent a lot of time sleeping which felt like I was catching up on all the fatigue of the weeks before my diagnosis, having tried to ignore the symptoms and get on with life. After my counts recovered, I was weak from the bed rest but I actually felt pretty good. The first bone marrow biopsy showed that the treatment was working and that I was technically in remission. Although at this stage we didn’t yet know whether I would need a bone marrow transplant, but being in remission after the first round meant that I was responding to treatment and that was a huge relief and good sign in itself. Yay!
The second round followed after 11 days of ‘break’ at home. It was a wonderful time seeing my family who hadn’t been allowed to visit due to covid-19. It was particularly hard because I never got to say goodbye to my children, I dropped them off at school and just didn’t come back again for the next 4 weeks. The break was great and just what I needed to regroup and prepare myself for the next round.
Chemo was harder that second time, mentally and physically. Technically I was in remission and my body was producing healthy cells, so it felt strange to have to destroy my immune system again. On a physical level, I was also a lot more alert and didn’t feel unwell when starting this round, so sleeping through the difficult side effects of chemotherapy like nausea and sickness was a lot harder. But in the end that round went uneventfully also, my counts recovering within around 5 weeks and me being sent home.
It was after this round that I experienced the first major delay. I was told that I had two genetic mutations, one of which was called FLT3 and required a chemo tablet for a year post treatment, and the other one was called NPM1 and would be retested after the second round of therapy and would determine whether I needed a bone marrow transplant or not.
One of my consultants expected the results to come in within a week or so but it ended up being nearly five. The wait was agonising, not knowing what would happen to my treatment plan and where we were going. During this time, I also experienced my first major complication.
I lay in bed one evening, around 10 days into my break and just started shaking like a leaf. I mean absolutely uncontrollable rigors that frightened the life out me and my husband Callum.
Off we went to hospital in the middle of the night to get checked over and it turned out I had a high temperature and a possible infection. I was pretty blue eyed then, actually refusing antibiotics because I thought I had just spent too much time in the sun that day.
Not long after, I became so unwell I had to be looked after by the intensive care staff as it turned out I actually had an infected Hickman line and one of my consultants had to come in at the crack of dawn on his day off to surgically remove it.
Needless to say, that was the last time I refused antibiotics! I still don’t like taking them but unfortunately sometimes needs must on this journey.
After recovering from that infection, I was sent home around a week later and continued waiting for my NPM1 results. I have to say when they finally came, they had been worth waiting for. The molecular markers for this particular mutation had actually become undetectable, so no bone marrow transplant needed! It was such a relief.
I once again packed my bags and checked into my ward at the hospital, again preparing for smooth sailing but unfortunately entirely unprepared for what was to become as my team call it my nightmare round. Chemo was uneventful but during my time of complete neutropenia I developed a swollen lymph node on my groin which slowly but surely turned into an abscess and there was nothing we could do about it except watch it grow. I had a high temperature; my infection markers were through the roof and I was in so much pain I couldn’t even bend my leg. At this point my team were still convinced it was a treatable line infection that would go away with enough strong antibiotics but after 3 weeks of intense treatment without improvement we finally decided that the abscess needed to be dealt with surgically by emergency incision and drainage. By this point I had been in hospital for nearly eight weeks.
As soon as the abscess was drained my temperature steadily came down and after a few days I got to go home. Unfortunately, the joy didn’t last long. Within five days I developed a new cough and yet another temperature. I couldn’t believe it! I couldn’t believe that it was happening and that I would have to go back to the hospital and leave my kids again after having just returned home after eight weeks. It was heart-breaking.
I was sent for another CT scan and it actually turned out that because the abscess had been left for so long, the bacteria from that infection moved around my body and settled in my lungs and also in my new Hickman line. So, once again, that line had to be surgically removed and I had to be put on strong antibiotics to clear the lungs, this time for a total of 6 weeks. Fortunately, I could receive this treatment as an outpatient and only needed to come to the hospital briefly every morning for a thirty minute IV.
At the end of treatment, I got another CT scan to see whether it had actually worked and after the positive results I was able to crack on with my last round which I am still completing right now.
I had hoped to be finished with everything in early August at the latest but now we are at the end of October and I still have a little while yet. I suppose the moral of me telling this part of my story is, that cancer treatment is unpredictable and even though we’d like to think that the treatment plan and time frame will run in a linear fashion, it’s important not to go into it with rigid ideas because it’s worse being disappointed when it doesn’t go to plan. No two cancer journeys are the same and although I have always had a very positive outlook, I wish I had known that things could potentially take a lot longer than predicted. I felt like every additional day past the deadline I had created in my head was extra time stolen from my regular life.
Since then I have come to terms with the fact that it will just take as long as it takes and I am lucky to be here at all but the transition from control to acceptance has been one I had to learn to embrace.
Trust your instincts, listen to your body but try to go with the flow as much as you can without stressing about things like time frame because it just adds pressure and anxiety to an already taxing time.
