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My diagnosis
“Have you ever wondered what it could be like to go through a stem cell transplant? Or what it could mean for the person receiving them? Well… In June 2017 I received some news that would change things for ever.
Until then I had been fairly active, working on farms and building sites in the Cotswolds, The Midlands, Somerset, and Ireland. I was very lucky and worked in some beautiful places. In 2010 I was joined by the most amazing dog Tarna (Tarusia) Marley, Tarna came to me at 8 months old and would be a huge part in my recovery. But at the start of 2017 I had been getting really tired, so I was relying on coffee or energy drinks to keep me going. I was also getting a lot of back and bone pain, pain relief and muscle relaxants seemed to be coping with that. I had been getting unexplained nose bleeds, some random bruising and wounds that didn’t seem to be healing. I do remember thinking this is all a bit weird but put it down to working 6 days a week and not having the healthiest lifestyle.
One beautiful, blue sky and fluffy clouds morning in June, I was back in the Midlands on site. Lads pulling into work, and machines warming up. It was a lovely morning except I had got a pretty spicy abscess in my gum and was going to see my GP after work. I was climbing up the scaffold ladder the same as any other morning. I got to a few rungs from the roof height, and I got another nose bleed, then, luckily when I was safely on the scaffold planks, I started to get dizzy, and I didn’t feel in control of my legs so decided to drop to my knees. After a minute or so the dizziness passed, I carefully made my way back to the ground and told my boss I was going to the GPs now instead. The surgery booked me in for an emergency appointment with the nurse consultant. I told her all my symptoms, but what I was most concerned with was the abscess. She prescribed antibiotics but also asked for a blood test. I had no problem with that, she was finished in no time and asked if I would like to stay at the surgery until they get the results, I said I would be fine and I made my way home.
About 2 hours later I got a phone call, it was the Nurse Consultant asking how I was feeling. She said my bloods had shown I was very anaemic, and she would like me to go to UHCW in Coventry for treatment and more tests. She offered transport and said there was a bed there waiting for me. Looking back these should have been my first clues that it was something serious, but I had no idea. I thanked her for the time and effort she had obviously put in but told her I’ll see if it will just pass. Then about 30 minutes later an NHS response vehicle pulled up outside my house and a doctor knocked on the door. He explained the surgery had asked him to come as they were really concerned about my health. I was starting to think about going now but still concerned about work, leaving the house and more importantly the dog. So, I refused again, the Doctor reluctantly left, and I went for a shower. In the shower I got another nose bleed, then seriously dizzy getting dry and back to my bed, then the phone rang, it was our lovely persistent nurse consultant again checking on me, she explained that from my bloods there is concern there’s other things going on too. That other tests were needed but they think I might have cancer. At this point I was pretty much ready to go anyway but this put a whole new spin on things. Luckily there were lots of friends around to look after Tarna and the house so I could relax about that. Work seemed pretty insignificant at this point.
As the ambulance pulled up outside my house, I kissed Tarna good bye and told her I will be back soon (thinking I would) I grabbed the essentials I had packed, no idea how long I would be staying but took enough for a few days. The ambulance crew were great, getting me from mine straight to Ward 34 at UHCW in Coventry. Staff came to welcome me, get me settled in and then someone came to tell me the plan. I’ll be honest I don’t remember a lot about this time, but I remember them telling me why I needed red blood cells and a bone marrow test. I agreed to both. After the blood transfusion and IV antibiotics I was starting to feel a little better in 24hrs or so. It was about then, that the doctor who took my bone marrow biopsy came in to tell me the test that they have done showed leukaemia, that the sample would be sent to London for more tests, but they would like to offer starting chemotherapy now. I asked what happens if I refuse the chemotherapy and I was told I would have a week, maybe two left, but the longer I left the decision the sicker I would probably become.
My treatment plan
Chemotherapy seemed like the best option, so I started on the AML19 Trial. This was a treatment option indicated for younger adults with acute myeloid leukaemia under the consultants from Warwick hospital. Little did I know I would be working with these amazing people in a few years.
Leukaemia is a condition where young white cells are released in high numbers from the bone marrow before they’re ready to be released. This means the cells don’t mature to adult cells and do not function properly. They also can’t be reabsorbed like they do normally, so the blood gets clogged with white cells that as an immune system, are about as much use as a chocolate teapot! As the blood stream and bone marrow fills up there is less room for the red cells that get the oxygen from your lungs to where it needs to be to maintain the body, and platelets which stop you bleeding and bruising. Finally white cells being immature cannot prevent serious infections which is always one if the biggest concerns. This lasted about a week, blood tests, injections, and IVs every day. They started me off with cannulas but as I was going to probably be having lots more treatment they suggested I had a Hickman line fitted. This is a tube that goes in your chest and the end sits in at the entrance to the heart. So, I had a trip down the corridor to have this done. I was under a sheet with a member of staff to keep me company, it was like we were on the most random camping trip ever! All I felt was lots of pulling and pushing round my chest. The line seemed to go in fairly quickly, then it was back to the ward for dinner. My appetite had gone for a few days but was back now more than ever. The Hickman line made things so much easier. I really felt for the nurses trying to find my terrible veins. Now they could just plug me into whatever they needed to get things in or out.
The treatment went to plan, going through my blood cleaning, it doesn’t discriminate between good cells and bad cells, so everything disappeared. I had it explained to me as “you spray an area with weed killer, then wait to see what grows back”. My blood counts then all hit the floor. Dependant on red cell/platelet transfusions and having injections to boost my white cells, I waited there a few weeks until they were happy the trends of my blood counts were all heading the right way on their own. I was lucky that my only dependant was Tarna, although she did play on my mind all the time. Luckily my neighbours were spoiling her rotten. One couple lived upstairs so there was someone at home almost all the time. They had always been some of her favourite people and I knew she definitely, 100%, guaranteed wouldn’t go hungry! Some other neighbours, and friends she had made, stopped in to see her for walks and to drop off treats. She always loved visitors so this would have been lovely for her. With my internal door and the back door open so she could use the garden she could do as she pleased. She loved her upstairs family and bonded very closely with their son; she loved days out in the garden with them all. I knew she would be OK; she probably really liked the bed to herself to start off, but I’m pretty sure she wished I was at home as much as I did though!
I had a couple of infections which are common and were dealt with straight away. I remember one night, I was in bed watching Netflix and I started to feel really cold, I had a spare blanket on my bed, so I pulled that onto me as well, but that just seemed to make me colder and I started to shake. I pressed the call bell, and a nurse came in, I asked if I could have another blanket as I’m freezing. She asked if she could take my temperature first.….it was 38.9⁰c. She explained I had a high temperature and that’s making me feel cold. She apologised as she took everything off except the bed sheet over me “just trust me” she said. Then she turned a fan on and pointed it at me. She said I needed IV paracetamol, antibiotics, and some blood tests to see where the infection is. I remember getting this feeling before but didn’t put two and two together, I had been feeling cold for months before being diagnosed but had constantly been having paracetamol so it would have been covering the symptoms of infection. I went for some dental work due to damage and risk of infection and the dentist said he could see signs of previous infection in my mouth, I’m guessing it’s from the abscess that made me go to my GP’s surgery. He said it had affected most of the left side of my face and started to move into my sinuses. With no immune system, left untreated this would have just kept spreading. Just 20 minutes after the IV paracetamol I was feeling much better. I still can’t get my head around, ….. more blankets making me colder…but they did. They took blood cultures from my arm and from my Hickman line, the results showed the infection was in my line, this meant every time something goes through the tube it pushed a bit of the infection into my blood, making me sick, they couldn’t get the infection out of the line, so the line had to come out. They can stay in for a long time with no issues but occasionally this happens. I remember the nurse taking it out of my chest. The area was numb with anaesthetic, I could just about watch her doing it. She very carefully cut in a few places, removed the line, and stitched me up. I stayed until the infection had been treated. Spending so much time in one room I had to make sure I didn’t get bored. I downloaded films to watch and games to play. My Dad brought my guitar in for me, and the staff requested songs for me to learn. It must have been so hard for my family to see me there. I think sometimes it’s harder for them than it is for the patient.
I went home after 4 weeks. Safe in the knowledge that the cancer had been knocked back for now at least. I would go back a few weeks later and do exactly the same again. It was a bit easier this time as I felt a lot better, knew the ward and the amazing staff. After this the options I was given were to wait to see if that was enough to stop the leukaemia coming back, I was at high risk of it coming back so the best chance of staying in remission would be the other option of a stem cell transplant. I decided to go with the transplant. Sometimes this can be done from your own cells, taking them out with a machine that can separate the cells taking the stem cells out, cleaning the rest of the blood with chemotherapy, then putting the stem cells back. I was told this wasn’t the best option in my case. I would need a stem cell donor that is matched to my tissue type. They tested my brothers but sadly they were not a good match, then they very quickly found a Polish man living in Germany that was an exact match and started the process of arranging for a courier to bring his cells to England on ice. That is all I know about this incredible man, my genetic twin and potential life saver.
For now, I just concentrated on resting, spending time with Tarna, lots of walks in the fields when I felt up to it. She seemed to understand when I didn’t feel I could manage a long walk. I made sure I ate a little extra as I knew I would lose some just being in hospital having that sort of treatment. As this was the third hospital stay I was a bit more prepared. First time to Birmingham though so a little anxious still. I went for a couple of appointments to discuss everything before I was admitted. Everyone at Ward 19 Birmingham Heartlands Hospital were so friendly. It felt really relaxed and very comforting. I met my transplant consultant and specialist nurse who were the loveliest people.
They explained what would happen throughout my stay and although I was concerned about it all, the way they told me, helped me never feel scared. Other patients in the waiting room who had been going for a while told me they always feel the same going to ward 19. There was definitely a very good energy running through the place. I would have to have lots of tests pre transplant, lots of blood tests so I got to know the phlebotomist really well. They checked how every organ and system were doing, Finally I had another bone marrow biopsy, and I would move into what would become my Birmingham home a few days later.
Stem cell transplant
On December 1st 2017, I went to stay at Birmingham Heartlands Hospital. This could be a 4/5/6 week stay but they thought I would be out around Christmas day. I was on a ward for the first couple of days then went into a side room. December 2nd I started treatment, this felt straight away much more aggressive, but I kept telling myself it’s only 6 days. The chemotherapy continued daily, after that I had a day with no treatment at all to give the chemo time to get out of my system before Day 0, if the stem cells went in when there was chemo still in my blood they would be destroyed, and we would have to start again.
Transplant day, Day 0, was the 9th of December 2017, I had turned 36 about a month ago and was planning on having an alternative Christmas in hospital. Birmingham was seeing some of the worst snow it had seen for a while and staff were struggling to get to work, but they did, and they carried on working on the ward as if it was a normal day. I could see the energy that I had witnessed in the clinic and phlebotomy area was in the ward too, it felt like I was visiting family or friends even though I had only just met them all. The actual transplant was a bit of an anti-climax. The bag of stem cells that had been so generously supplied by my incredible donor, the Polish man living in Germany, carefully brought to Birmingham by a courier, stored there until the perfect moment…..was gone in the blink of an eye and I felt no different. I didn’t expect to be cured instantly but I did expect something. This was only a good thing though as it meant they had gone in and there was no reaction.
After a couple of days some side effects started and lasted for a while. I won’t go too much into details, but they made the basic needs of a person like sleeping, eating, drinking and other things really difficult. When you have an allogenic stem cell transplant there can be lots of different types of side effects, from the chemo therapy and because your new immune system will be made from another person’s DNA. So, although it is a 100% tissue type match, it can still see you as a foreign body or part of you that’s not working properly and try to ‘fix’ you the same way it would ‘fix’ a virus.
I was looked after with exceptional care at Ward 19 and made it through what could have been one of the hardest times in my life, actually quite nice. Christmas day came and we were spoilt, I was lucky enough to be able to walk quite confidently so I would go out around the grounds to stretch my legs. Just after Christmas day I was told my blood counts were recovering and I would be able to go back home. I loved that when I needed to have this treatment done, there was somewhere like Ward 19 for me to go. The experience I got from the moment I walked into reception was always a great feeling.
So, I went home, back to Tarna, friends checking in on us regularly and started the long road to recovery. There were lots of little side effects but 6 months in I developed Chronic anaemia as one of my main side effects. Once my blood was 100% donor cells I didn’t make any red blood cells, I was told this is common in people who have had what they call an ABO mismatch donor, this means that the tissue type was matched but my donors blood type was A and mine was O, at some point my blood type should change to A as well, it normally kicks in from 6 to 12 months. Mine would take a little longer, almost 2 years. I attended the day unit at ward 19 for regular clinic appointments, blood tests, and transfusions, 2 units of red cells every 2 weeks. The idea was to keep me going until I produce my own. To start off I was in and out of there like a rabbit in a carrot field for one thing or another. A lot of the time I would only be in for something quick but would stay for a few hours seeing everyone, drinking tea, and eating whatever was around.
They tried all sorts of treatments to start my bone marrow producing red cells including adding some CD34 cells which were also collected from my donor, but nothing was working. They did a bone marrow biopsy to see if there were any reticulocytes (baby red cells) in my bone marrow, but that showed nothing. The white cells and platelets were working perfectly but the reds weren’t even trying. Towards the end of the 2 years, I was starting to get some concerning blood results. My iron levels were getting dangerously high. This goes up every time I have a blood transfusion…but I needed the transfusions! This played on my mind a lot, not being able to see a way out of it. After another month or so, my consultants had been talking to their colleagues and had come up with a plan, they would try a type of steroid, we just needed my red cells to kick in and that would make the transplant a complete success. The new steroid definitely had an effect, I felt so much better, it was explained this was only covering things up not fixing the problems like fatigue. Whatever it was doing this gave me a lot more energy and I was able to get to the gym which kept me entertained. After a couple of months, another clinic appointment, my consultant came in with a big smile on his face. He passed me my blood results and said “look” for the first time my HGB had gone up by its self, no need for a transfusion this week. I still stayed for a few hours though because there was cake. Then the next week, it went up again, and again. It’s still unknown what fixed the problem. It may have been the shock of the steroids, the extra exercise getting my blood moving more, or just the time…..but something worked. My red cells got to the normal level where they have stayed since. Then it took another 18 months of venesections, where an amount of blood is taken off which takes the iron with it, to get my iron (ferritin) levels back down. Every time a unit of blood was taken, my body would start to make the cells back again. With terrible veins it wasn’t easy, but we got there.
The only time I needed to stay on the ward, apart from during chemo and my transplant, was when I developed a side effect that was a rare type of Graft vs Host disease. This is where my donated immune system knows I’m different to it, so it attacks. This showed itself at first as lots of joint pain, and a migrating rash, I didn’t even know rashes did that! One morning it was on my ankle, then in the evening it was on my shoulder. It just kept moving and popping up like a submarine. The pain moved as well and eventually it took me off my legs. My transplant consultant said he thought it was Graft vs Host disease and I should have steroids, some other doctors wanted to have a look to rule out other things, they decided it was either graft vs host disease or a condition called adult onset stills disease, both would be treated by the steroids so they gave me some in the muscle in my arm, and tablets to take after. By that evening, I was able to walk to the bathroom again unaided, then by the next morning I was walking to the entrance. This still has some effect today 6 years on. We’ve tried treating it with steroids creams and tablets, as it’s an immune system thing we tried immunosuppressants, both help this problem but cause other issues in my case, so I decided to just stick with a steroid cream and another ointment which is stopping it getting angry again.
About 6 months post-transplant I bumped into a friend who teaches Pilates classes, and she asked if I wanted to go. I wasn’t sure at first, I think it’s a man thing, but I really enjoyed it. Building muscle strength up in a fairly relaxed way. I’ve got to admit even though it was a beginner’s class, some of it was pretty tough! When I felt a bit stronger I joined a gym, partly because I just wanted to get out of the house, but mostly because I wanted to improve my strength and stamina. The gym staff were really welcoming, giving advice on how to gently work your way into it. They even kept ward 19s and my specialist nurses phone numbers in the office with instructions about me being at risk of neutropenic sepsis for the paramedics if we ever needed them. Thankfully we never did but I felt much safer knowing my team would know if something happened. I spent a lot of my time here. Learning different routines, which muscles get worked with each exercise and started to pick it up fairly quickly. Building myself up and enjoyed testing my limits. I also spent time learning to cook healthy, tasty food. Food is such an important part of recovery. I remember there was one point where I completely lost my appetite for about two weeks. I was relying on fortified milkshakes for most of my calories, then I smelt some tomatoes in a greenhouse. From that point on I had tomatoes with everything. Finding that one thing I liked was a real breakthrough, and then just built on that by adding things to the tomato-based diet.
Sometimes my goal was to put on weight, or lose it, or get more energy. During my treatment something made me diabetic, and I was relying on insulin for 6 months, again my diet was a huge part in dealing with that.
Support for me
During my time at ward 19 I met someone from a charity called Leukaemia Care, they offered lots of support and advice which was really useful. After speaking with them I decided to join their Buddy Scheme where they put you in touch with people going through a similar situation as you have, to give them an extra bit of support. Another charity I got involved with was DKMS. They promote signing up to the stem cell donors register and go to events and festivals to swab new donors and raise awareness. It was great to see the dedication from the volunteers and the enthusiasm from those wanting to sign up. I imagined my donor doing exactly the same in Germany sometime, and imagined the look on the recipients face when they’re told they’ve been found a match in one of the people swabbed with us. Seeing them inspired me to set up a few donor drives in my home town.
It was things like this as well as going to the gym and walks with Tarna that helped to keep me going, I’m not sure if it was the fresh air, contact with others or just getting the blood and body moving but it definitely improved my mood. Tarna was great for getting me up and out of the house during my recovery. I knew how much she wanted to go for a walk so if it was in any way possible, we went. I always enjoyed it once we were up there, but she was always very aware that sometimes I could only go a short distance, and sometimes not at all.
Working with Leukaemia Care I started to enjoy finding out things about the issues others were having and I had always enjoyed the atmosphere at ward 19, so I was seriously thinking about a career in the NHS. I had also learnt so much during my treatment from my team, it would be a shame to waste it. When my red cells had woken up and things were starting to return to normal, I started to look into support worker jobs at Warwick hospital. After lots of checks and a couple of references from my team in Birmingham as they had known me best for the last few years, I was successful and started on an acute ward in January 2020.
This was partly Haematology, and the rest was frailty. It was a big change from anything I had seen or done before but I needed to go through this route to gain experience to build on. I was very lucky to work with an amazing team who were understanding when I was struggling with fatigue every now and then. I made some dear friends and found very useful mentors here. On this ward we had a few people with dementias. This was something I knew nothing about, so I started talking to the Admiral nurses who are our Dementia Specialist Nurses. They invited me to become a dementia link nurse and learn how to help someone keep occupied and as relaxed and content as possible while they are with us, hospital can be a very strange and boring place if you’re stuck in one area. Our ward started working with a charity and we started to develop activity books and photo albums for patients to look through on subjects they would remember and enjoy. Bringing back fond memories of childhood and growing up.
I started here in January 2020; I’m sure I don’t need to remind anyone what came next. I’ll keep it short; our ward was turned into a covid ward, I remember our patients being taken elsewhere and new patients coming in. I called my transplant consultant who had mentioned before about something happening in Europe that could potentially be very dangerous to me. It was this virus. He advised me to speak with my ward manager and to leave. This was such a difficult thing to do, leaving the team that had taken me on and taught me the ropes, to deal with this. I would have to stay at home until further notice. I started working for another team from home which kept me occupied. Then when I was allowed back to work the team put in some extra effort to make sure I was as safe as possible.
After a couple of years, I moved to our oncology/haematology day unit. This is where almost everyone being looked after by the South Warwickshire University Foundation Trust Cancer Services will go at some point. Having the experience of going through my treatment made me feel very comfortable talking to patients here. I really enjoyed the work and the team were incredible! They have the consultants clinics, treatment area and an acute oncology service for emergencies. The clinical support workers do one of my favourite jobs here, the phlebotomy clinic. I wish I didn’t have to use a needle, but I really enjoy taking bloods, especially the really tricky ones like me! I think it’s more about having that one-to-one time with patients that I really enjoy, finding out how they are getting on and knowing once you got their blood they would get their results soon to guide their treatment.
Both teams I’ve been with so far showed exceptional teamwork and dedication to their patients. It’s been a huge inspiration to add to the experience I received at ward 19. I’ve been lucky enough to work alongside my transplant nurse who put my amazing donors Stem Cells into me, my transplant consultant when he came to us for a few weeks and so many other incredible members of the trust.
During these last few years, Tarna had been fighting her own battle, she had an operation to have some lumps removed which gave her another two years. But eventually it got the better of her and she passed away at home. If I’m honest this was probably more devastating than when I first heard I had cancer. We had been through some really tough times and turned it into a great life. I felt lost for a long time without her.
Tarna had made lots of friends during her life. A few of them came to stay with me at the weekends. Giving me that reason to go out for a walk again. I had really missed this. Working in the cancer services I remember thinking regularly that this is the place for me, but I was keen to train to be able to perform more clinical skills. There were a few ways of doing this but in 2023 I decided the student nursing associate apprenticeship looked like the best option for me. This is another way to get registered with the Nursing & Midwifery Council. Learning on the job a lot of the time with a day a week at Uni. I’m loving the content of the course, which is keeping us all very busy, but it will all be worth it. We have a lovely group, who are always very supportive of each other. It’s nice to know people like that, will go on to provide care in the NHS.
Our course has us based on a ward, we were asked where we would like to be if we were given the choice, I requested the ward where I first started, and that dream came true. The work isn’t easy, but it’s interesting and enjoyable and that’s enough. I’m so happy to be doing my training where our haematology patients will be, along with a lot of general medicine. We get several 4-week external placements to other areas like A&E, Cardiology and Trauma & Orthopaedics etc to gain extra experience in those areas. We can also request days with other teams like x-ray, pharmacy, and community teams.
With lots of support from colleagues in our trust I feel this will work out really well. My health is good at the moment, I’m still having blood tests and chats with one of my consultants at least every 3 months which all have been good news for a long time. The only real issue is chronic Graft versus Host Disease which is under control with a couple of creams.
I’m so grateful to have had those incredible teams there when I needed them, what they did for me will stick with me forever.
The future
My plan is to stay as healthy as possible through fitness and diet which naturally helps with mental health too. To get registered with the Nursing & Midwifery Council, then there’s all sorts of things I can train to do. My passion has always been haematology, but oncology has become very interesting now too, so I hope to stay in those specialities. I need to make sure I remember to rest, something I’ve not been great at, but I’m sure it has helped to push myself sometimes. Continue to visit beautiful places and meeting incredible people. To get another dog at some point, now isn’t the right time as I’m too busy. But that time will come.
Support services
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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