About two months beforehand, I started to feel very tired, and although I was exercising a lot and running at least once a week, I felt that my fitness levels were not improving; in fact, I was getting worse. I felt exhausted all the time and had trouble walking upstairs as I felt breathless, and exercising left me feeling like I would faint. I would keep having to stop when walking the dogs too as I felt like I would just collapse. I put it down to poor diet and went to see a nutritionist. I was also experiencing very painful gums and mouth ulcers, so went to see a dentist.
In addition, I had very heavy bleeding during my period. It would not stop, and I was bleeding through clothes, changing them nearly every two hours. I had a banging headache where I could hear my heartbeat in my ears so loud my head felt like it was throbbing, and it would not go away when I lay down. I had achy shoulders and neck down the left-hand side as well, and purple spots on my jaw which had been there for months. I was covered in unexplained bruises and petechia. The night sweats were awful too, and I had a temperature and felt like I had the flu a few days before diagnosis.
I had been experiencing some of the symptoms for a few months and put it down to stress as I was going through a divorce, had lost my job as I’d worked for my husband, and was spending long hours setting up a business. It provided an excuse for the symptoms, but when they started to become worse and unbearable I went to the GP. I never thought it could be cancer.
The GP’s initial reaction was that it was probably stress related and I should eat more spinach and iron-rich foods if I felt anaemic. I told my GP about my sister’s history of aplastic anaemia and how I was worried about that. This was dismissed. My bruises were not checked, temperature not taken, and I was told I was just having a heavy period. I had to ask for a blood test and was told I could book in for a non-urgent blood test in a week’s time. I would have been dead by the time the test came around. I was sent away without any medication or tests.
I staggered home and spent the next two days working and taking endless painkillers for my headache. I could hear my heartbeat in my ears so loud at times I couldn’t hear people speak. I even did a personal training session with weightlifting! After every lift I felt like I was going to faint and ended up having to sit on the floor to stop the room from spinning. I felt like I was getting the flu. I remember telling people I felt ropey.
By Saturday evening I was shaking violently with a temperature and was bleeding profusely. I live alone and was very scared at this point that something was not right. So, I called 111 at 10.30pm as I almost collapsed and I felt so ill. They booked me an out of hours GP appointment at the hospital in Worcester for 1am. I was offered an ambulance, but I drove myself there as I didn’t want to cause a fuss. In hindsight I should have said yes to the ambulance!
The out of hours GP was wonderful. She looked at all my bruises, took my temperature, blood tests and urine sample, which was just blood. She said she thought I was seriously ill and would call me with the results as soon as she heard from the lab.
I drove myself home and at 3:30am she called to say my blood test was severely abnormal and she suspected I had aplastic anaemia like my sister. She offered to send an ambulance to get me, but I said I would make my own way to A&E, calling my sister to take me in. I wish I had taken the ambulance as by this point I felt very faint and feverish.
I arrived at A&E where they were waiting for me and put me straight into isolation, giving me blood transfusions, an ECG, blood tests, IV antibiotics and eventually sending me to resus. After being in A&E for about eight hours and having had my first of many bone marrow biopsies, I was told I had acute myeloid leukaemia (AML) by my consultant. I was moved to the haematology ward later that night and was told I needed urgent chemotherapy and wouldn’t be leaving the hospital for weeks. I was gravely ill. The doctor drew back the curtain and the other patient’s relatives who had all heard the conversation were silent. I looked at my sister and wailed. I have never felt so alone and scared in my entire life. When my sister had gone to call her husband, I was still sobbing and the nurse came over to see me. She asked if she could call my parents or husband and I had to inform her through sobs that my parents both passed away a few years ago and my husband left me nine months ago. I truly was all alone. Word got around to my friends and ten of them turned up at A&E from all over the country. I was so grateful. I cannot tell you how much that meant to me. The staff said I had a revolving door there!
After being moved from A&E to Laurel 3, the haematology ward, I rapidly went downhill. I picked up C-diff, started chemo for AML and had a Hickman line fitted after bags and bags of platelets and blood. I was told the purple spots on my jawline were Sweet’s syndrome and then developed excruciating colitis and ulcers. I was moved to my own isolation room.
Two days into the chemo and after two bone marrow biopsies, I was told I actually had acute promyelocytic leukaemia (APL) which in their eyes was the ‘better’ one of the two as it’s more treatable. So, I started on a new chemo regime. It was bright orange idarubicin. Or Iron Bru as I affectionately called it.
I was devasted as the chemo went in, because I knew this would mean my chances of having my own children were being wiped out. I had begged to have egg freezing before starting but the doctors told me there was not enough time; I would be dead before the process could be completed.
I spent the next six weeks in Room 5 on the Laurel 3 ward. I never left that room. I had constant temperatures, diarrhoea, I was covered in spots that looked like chicken pox, I couldn’t eat, I could barely move. I thought I was dying. I probably was. I was attached to a drip constantly, IV antibiotics, antifungals, fluids, painkillers, anti-sickness, you name it, I had it. They couldn’t get control of my temperature and didn’t know what the cause was. I had numerous MRIs, CT scans, ultrasounds, blood cultures, but no one could stop me getting worse. I was on pethidine as I constantly used up my daily paracetamol allowance, oramorph for the pain, and about 30 plus other tablets a day including ATRA. My lovely long blonde hair fell out in clumps and I sobbed and sobbed as I pulled it out. I sat there in my hospital bed, body ravaged by cancer and chemo pouring into my veins, bald, bleeding, with a tube going into my right breast straight into my heart, and my divorce came through. That was my lowest ever moment. My rock bottom. I thought I would never make it.
I had a skin biopsy done on my jawline which had now swollen up into lots of big abscesses and I was given a new antibiotic which seemed to do the trick. Finally, my temperature came down to normal and my blood counts were high enough for me to go home. I was so utterly relieved. I had spent the whole of October in hospital with no warning or preparation time, brought in urgently in the middle of the night.
I was allowed to leave, I couldn’t believe it! I was left alone at home with only my cat for support! I should never have been left by myself, but I didn’t have anyone to look after me and I desperately wanted to be in my own home. I felt dreadful. I took one look at my poor body in a full-length mirror and fell to my knees in waves of emotion. What had happened to me? It was utterly traumatic and life changing.
I struggled on for the next few days, trying to feed myself and sleep as much as I could. I wasn’t well enough to keep my dogs overnight, but I managed to see them for a few brief visits. That kept me going. They were so happy to see me. Unfortunately, my beautiful cat had to be put to sleep a week after I came out of hospital. She was the grand old age of 20! Another blow. How much more could I take?
Then a week after leaving hospital I fell out of the loft hatch! I had been putting something up there and the ladder slipped. I was knocked unconscious and the dogs licking my face woke me up, so back to A&E. Thankfully my platelet count was high enough for them not to worry too much and no broken bones. I realised then, that I couldn’t look after myself and started to ask for more help from friends.
I started the second round of chemo and managed to stay as an outpatient, with friends driving me to and from sessions. The third round of chemo around Christmas time seemed to be going to plan, as I was told I was in remission. Then I fell quite ill again. I was experiencing high temperatures and double vision. I had the horrible headaches back again and we all thought it was side effects of the chemo. I had a few long stays in hospital again and upon being discharged my eyesight worsened. My right eye started to turn inwards, and I couldn’t see well enough to even walk in a straight line. I saw the eye specialists, had more MRIs and eventually a lumbar puncture. The lumbar puncture relieved the pressure on my optic nerve and my eye righted itself. Great! All was going to plan, so I thought. Until I went in to see my consultant. I was in the room on my own expecting good news. After all, I was in remission! However, he told me the results from the lumbar puncture and latest bone marrow biopsy showed the cancer had come back with a vengeance. This time in my central nervous system, the fluid around my brain, and also low traces in my bone marrow. I was devastated. My world fell apart yet again. He informed me I would be starting chemo in two hours’ time. I had no warning and I was so terrified. How could this be happening again? I thought I had ‘beaten’ the cancer. Luckily a friend was waiting for me in the waiting room and as soon as I saw her I just burst into floods of tears. I went back two hours later, and they started a course of intrathecal chemotherapy.
I had in total 17 lumbar punctures, with chemo injected into my spinal fluid over the coming weeks. They were my worst treatment to date, I hated them! A couple went wrong and it is the most painful feeling. I have a high pain threshold, I just get on with things, but these almost got the better of me. I experienced the worst headaches ever; on one occasion I couldn’t sit or stand up straight and had to have help getting changed and walking into the hospital as when I sat up my head felt like it was going to explode.
The vibe on the ward the day of my first intrathecal chemo was sombre, everyone was so disappointed and deflated that I had relapsed. I remember consultants saying I would need a stem cell transplant in order to survive. To me this was my very worst nightmare.
I asked to delay treatment for a few days so I could be a bridesmaid at my friend’s wedding. They reluctantly agreed, and I think then I realised how poorly I was yet again; time was of the essence. So off I went to the wedding, wig in place and coping with the pain I was in by taking codeine. The next day I was admitted to hospital and started an eight-week course of arsenic. Yes, that’s right, arsenic! The last patient at this hospital on arsenic was two years prior so I quickly became known as the arsenic girl! It is administered through an IV like chemo. I imagined the world would turn black and white like an old noir film, but sadly everything stayed the same, apart from my heartbeat. Arsenic can affect your heart and so my twice weekly sessions were preceded by an ECG and more often than not a potassium infusion. This was an uncomfortable time for me. I could feel my heart racing at times for no apparent reason and the mixture of arsenic and lumbar punctures every week soon got to me. I was exhausted. I would go home and sleep for hours after each session. I felt like I was missing out on life. And I have never eaten so many bananas in my life, as arsenic lowers your potassium!
I realised during this time that I couldn’t live at home alone any longer. I couldn’t cope. My lovely ex in-laws asked me to stay at theirs and I will be forever grateful for their support and care.
After the first round of arsenic and intrathecal chemo I was told I was in molecular remission again, but a stem cell transplant would still be required in order to blast my bone marrow. I was very reluctant to do this and went to see the Professor at the Queen Elizabeth Hospital in Birmingham. They searched for a donor and one unrelated match was found. However, because I was in remission it was decided that I could have my own stem cells back, an autologous stem cell transplant. After hundreds of sleepless nights, calls to specialists, discussions and soul searching I decided to go ahead with the auto stem cell transplant. I had my stem cells harvested over two days, six hours spent on the machine each day, unable to move my arm or use the loo! Eventually, after a special injection to get my stem cells overproducing, enough were harvested for the transplant to take place and they were put on ice.
I asked for a chance to have my eggs frozen, should there be any left undamaged. I was told I could go through with the procedure and now was my only chance. So, I got funding and I went to the Women’s hospital in Birmingham. The whole experience was traumatic. I was a single, freshly divorced lady, whose heart and body were broken, but I so desperately want kids that I tried it. I spent a few weeks injecting myself with hormones and going in twice weekly for scans and appointments. At first there seemed to be a glimmer of hope that we might be able to harvest one or two eggs, but then disaster struck. I came down with an horrific infection in my Hickman line which meant I was hospitalised. I begged the staff to let me go to my final appointment at the Women’s hospital and they let me go. Then the most crushing thing to happen to me in this process occurred. I was told there were no eggs to harvest. The treatment I had already received had damaged my ovaries and that was it. It’s not the end of the world, the doctor told me, but to me it was. I had lost everything. My glimmer of hope was gone and so was my hope for the future. I cried all the way back to Worcester hospital and there I spent the next few days in isolation recovering from this latest life-threatening infection and my line was removed. I don’t normally cry in front of the nurses but this night I did. They were fantastic, holding my hand, crying with me and supporting me.
So, I geared myself up for the transplant. What else was there to do? I got shingles, which delayed the process, and I had a second Hickman line operation which went wrong and the tube ended up sticking out of my neck and I had to have it removed. I then had to go in the day before my transplant to have a third Hickman line operation. Whilst on the operating table, the QE in Birmingham called wanting me to go in that evening to start the transplant. I was so upset, scared, terrified, nervous, all of the emotions! I said no at first and called my consultants to say I didn’t want to do it. But I was talked around and so I was dropped off in August on the bank holiday evening at the QE.
The transplant process began with cranial radiotherapy. A mask had been sculpted to my face a few weeks beforehand and it was like torture! It was unbelievably tight, and they screwed it to the bed to stop your head moving. I am claustrophobic, so I had to gather all my strength to get through these sessions, practising mindfulness and meditation to get me through. But I did! I have realised how strong I am.
The next stage was total body irradiation. This is the one procedure that would 100% make me infertile, no hope or chance of having kids after this. I had begged for ovarian shields but was told I couldn’t have them. The chair you sit on is like an elevated dentist’s chair and your legs are tied together to stop them moving. You have to sit still there for thirty minutes twice a day for four days, alone, whilst the beam goes up and down your body. I brought some CDs with me and cried all the way through the first sessions. I can never listen to those albums again without being transported straight back there and crying my eyes out. I even balled my hands up into fists and placed them over my ovaries in the vain hope that this would protect them and one day I could be a mother.
I got progressively sicker as the days went on. My hair, which was now about two inches long and had been dyed pink, started to fall out again. I thought it would be easier second time around but in fact it was harder. I had received more high dose chemo and began to puff up. Once again, I was on numerous tablets and IVs. Then the day of transplant came! Thank goodness for me I had a friend there at the time, I wouldn’t have wanted to do that on my own. My stem cells were warmed up out of their deep freeze and fed back into me through my Hickman line. At this point my bone marrow had been obliterated by the radiotherapy and chemo and this was the starting point, the reset button so to say. An exciting time! It took two days in total and the stem cells had a distinctive aroma and taste of sweetcorn. I can’t touch the stuff since!
I was transported by ambulance back to Worcester for my recovery, where I was placed in isolation again and rapidly went downhill. My mouth was agony with mucositis and I was being sick. I couldn’t eat and ended up on a morphine driver for the pain. I felt very low and wondered if I would ever recover again. Maybe this was all too much?
The wonderful staff got me through and after two weeks I was sent home. I went to stay with my sister and ex in-laws for a few weeks. I couldn’t even walk up the stairs without help and a shower took all of my energy for the day. I would have to go back to bed after having a shower! Slowly but surely, I built up my strength.
However, and here’s the hard bit for me to write, the transplant hasn’t grafted properly. Unfortunately, my blood counts are struggling to reach a ‘normal’ level following the transplant. I am now 10 months post-transplant and I am still struggling to function normally. There have been discussions about a further allogeneic stem cell transplant, but it has been deemed unnecessary at this point. So, I have to hope that my bone marrow will start to regenerate normally in the future, or maybe this is as good as it gets. Who knows.
I do know for certain that I am in medical menopause and I am due to start HRT soon. This for me has been one of the hardest elements of the whole process.
But I am still here. Without all of this treatment I wouldn’t be here at all, for certain. So, I am eternally grateful to all the nurses, doctors and hospital staff who have kept me alive. I am in remission now. I am trying to keep my mind and body active and I volunteer at Malvern Hospital looking after their raised beds garden which helps me while I try to build up my strength and hopefully brightens the patients and staff’s day.
I hope the Spot Leukaemia campaign will raise awareness of the signs and symptoms of leukaemia for both patients and healthcare professionals. I would urge anyone who has these symptoms to seek urgent medical help and demand an urgent blood test. I would also hope that on seeing this campaign GPs would request a blood test on a patient presenting with these symptoms as a matter of course. A simple blood test could help diagnose patients within a few hours and lifesaving treatment can then be administered as soon as possible. Leukaemia can affect anyone regardless of your age and ethnicity.