My blood cancer journey began in 2009, although it would be some years before I would be diagnosed. This was because my initial symptoms showed up around the same time that I had gallbladder surgery and probably because I was just considered a menopausal female…
I was experiencing abdominal pain and swelling, along with tiredness and sudden paleness of the face. This was attributed to bowel adhesions following my surgery, so I had a further operation which hoped to undo these and eradicate my abdominal discomfort. However, when my issues persisted, further scans suggested I had ‘mesenteric panniculitis’, inflammation in the fat surrounding the bowel. This was thought to be causing my symptoms. In 2013 I retired from work. But my pain persisted and I was totally exhausted, with no explanation as to why.
In 2014, I saw a new GP who found I had two incisional hernias in my abdomen. I underwent an endoscopic repair of these, removal of more adhesions and the insertion of a mesh patch. But still my abdominal pain and swelling, along with other symptoms, persisted.
In 2015, I had bilateral knee replacements. Post surgery, I had huge bleeding problems, needing four units of blood. My leg was distended, looked like a black pudding and had to be kept in a splint for three weeks. The surgeon was excellent, but could not explain the bleeding issues, so my second knee replacement was delayed while he referred me to haematology. I was told I had a rare hereditary platelet function deficit, affecting a receptor on the platelets called (p2y). This condition, not detected by standard hospital clotting studies, had prevented me from clotting appropriately all my life. My second knee replacement was therefore performed with pre and post operative platelet transfusions and a different surgical technique. Despite this, it also needed splinting and the haematology team kept me on their list. Meanwhile, the abdominal pain and swelling continued.
In early 2016, a routine breast screening showed a lump. The biopsy resulted in me being admitted to hospital overnight for a platelet transfusion as it had caused so much bleeding. My abdominal pain and swelling, along with episodes of paleness continued, and I underwent further investigations, such as a gastroscopy to see if there was an issue with my pancreatic duct. There was nothing detected. But further exploration revealed the presence of a very large spleen. Again, I was referred to haematology and soon after this I started to experience soaking night sweats. Further investigation showed the presence of the JAK2 marker on my platelets and in May 2016 a bone marrow biopsy confirmed the presence of myeloproliferative disease.
At this time a clinic locum told me that, at the age of 60, I was too old for a transplant and because of the condition of my bones, I only had a 25% chance of surviving the next two years. At the time, I had private healthcare so was lucky enough to be put onto Jakavi, which at that time was still waiting for NICE approval for use by the NHS. I did well on it. My symptoms improved as my spleen shrank back to a more normal size. But by 2018, my platelet counts had increased and I needed top-up transfusions, so I was put on Hydroxyurea as well as Jakavi. At first, this was monthly, then fortnightly, then weekly. I was also admitted to hospital with atypical left lower lobe pneumonia, probably due to my spleen pressing on the lower part of my left lung.
I was offered the option of a stem cell transplant by the NHS if a donor could be found and provided I was physically fit enough. My brother was too old and my sister was not a suitable match. But thanks to the transplant team, a compatible voluntary stem cell donor was found. On 12th September, I started pre-transplant chemo. I caught norovirus in hospital, but made it home for a two-week break before returning for my first stem cell transplant. I was home by Christmas.
In March 2019 I got an autoimmune haemolytic anaemia, thought to be triggered by a bacterial infection. This meant my own immune system was making antibodies to my red blood cells and destroying them. I returned to hospital for multiple blood transfusions. During this time, I also suffered a stroke which caused some speech difficulties, which are now only apparent when I’m very tired. The haemolytic anaemia and treatment for it, resulted in failure of my stem cell transplant and I was forced to stay in isolation with no bone marrow function, sustained by platelet and blood transfusions and with no clear way out.
In June 2019, my donor offered new stem cells. This transplant went less smoothly. I had problems with nausea, suffered a bad reaction to Cyclosporin A, had a brain bleed and seizure and a condition called PRES, a rare side effect of Cyclosporin. I had problems seeing colours correctly for a few days, as well as other complications including difficulty eating (I had to be fed via the Hickman line for three weeks). Leaking PIC lines resulted in me getting sepsis for which I needed IV antibiotics. I also caught a hospital superbug and ended up in ICU overnight.
When I was discharged from ICU, my left knee replacement was swollen and would not bear my weight. The artificial joint had become infected with the superbug. I finally got home in August 2019 and gradually recovered, but my T cell counts remained very low and I was highly immunocompromised. By March 2020, the graft was failing and a few weeks later, I turned yellow and had very dark urine. I was suffering with GVHD affecting my liver, skin, gut and mouth. Subsequent treatments for this have caused some joint problems.
By Christmas, my graft was doing well but my liver function was poor. I had some remote physiotherapy, but I also needed many venesections to remove excess iron from so many transfusions. I also fractured my sacrum and had two falls. I have various ongoing health issues resulting from my treatments. But now, I can drive and have a good quality of life .
I owe everything to the staff at the Haematology and Transplant Team, my German stem cell donor and the support of my husband, sister and two children and their partners. A special mention is needed for Max Jones who ran the London marathon to fundraise for Leukaemia.
My blood cells and bone marrow are now that of a German male while the rest of me is a British female. Because my donor had normal platelets I also no longer have a problem clotting. My huge thanks to everyone who donates blood platelets and stem cells which have made it possible for me to survive and be here for my family.
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).
Did you find this webpage helpful?
If the answer is yes, please consider leaving a donation, no matter how big or small, we are incredibly grateful for your support and contribution.