Russell Cook

I’m sure there’s a few of you who will have a bit of an idea about me. You’ll know I’ve had MDS, lots of hard times and treatment, and the positives of 3 bone marrow transplants. You’ll possibly know that I’m a Trustee of MDS UK and that I have done my best to be a mentor, raise funds, and help more people be aware. 

I’ve also had the good fortune to sort out my families finance and help create my business in the best wealth manager in the UK. I’ve even been planning on retirement.

But things have changed, and suddenly too. My career has come to a sudden end though I would still hope to help people. The reason?

A journey of hope - my unfinished story!

Nelson Mandela once said “The greatest glory in living lies not in never falling, but in rising every time we fall.” In truth, life is not a smooth sail; we don’t know what tomorrow brings. It is a crazy ride, where nothing is guaranteed.

I had 55 years of smooth sailing in terms of my career, health, and family life before I hit a roadblock. On 30 January 2023, I was diagnosed with bone marrow cancer Myelodysplastic Syndrome (MDS RCMD/EB1) with a medium survival prognosis of 4.6 years (Oncologist at Hammersmith Hospital). The diagnosis followed a routine blood test, which came as a big shock for me and my family, as at the time I considered myself fit with no symptoms whatsoever. I was playing weekly football, cycling to work and walking approx. 5 miles daily.

Until this point I always thought I had control of my life, but this belief quickly started to unravel. The doctor’s room spun wildly as I grasped my wife’s hand. I had not even asked the doctor how long I would live. I could not even pronounce this cancer, let alone spell it. One of the most difficult aspects of this type of cancer is its rarity. I personally don’t know anyone with this type of cancer, but through the NHS website and social media I have heard from people all over the world. This type of cancer generally happens to people above 60 years, so it had caught me early! I think one of the hardest things about being diagnosed with this type of cancer is knowing it is treatable in some cases, but generally is not curable. It is unlike other cancers such as certain types of breast cancer, where survivors are encouraged to “ring the bell” when they finish their chemotherapy. We never get to the ring the bell because the only cure is a bone marrow transplant, and not everyone is eligible.

It was an emotional roller coaster ride throughout the first couple of months, i.e., learning to cope with this new reality of life. We always have some blind spots in our life which we rarely see (or don’t want to see or think about), but I have to say this uncertainty towards life helped me discover other perspectives of life which I never considered before. My senses of optimism, resilience and perseverance. Values which I always passionately believed in as an explorationist really helped me manage my emotions, giving me the courage to stand up and face the challenge ahead instead of giving in.

I decided to go for a second opinion at Kings College Hospital London, which is a renowned Centre of Excellence for this particular type of cancer. Here I met Dr Austin, smart, compassionate and one of the most fantastic professionals I came to know. I could never have made it through this journey without him. In Dr Austin’s experience, the only potential cure of this disease was a stem cell transplant, with a success rate of around 50%. Stem cell transplant itself is a complex process involving a donor’s cells and has its own risks. Finding a right match from a potential donor was the most challenging and stressful part of the transplant. In the doctor’s experience there was 1:4 chance of a match in siblings and 1:100,000 outside of siblings.

A cancer diagnosis either makes you resigned or determined. I wanted to be in the percentage that survived, so, I said, “let’s do it.” For me, the choice was simple - either survive around 4.6 years or live a quality life greater than 4.6 years with a 50% chance of success. I opted for the latter, accepted the risks of failure, and decided to fight. I started feeding on the positive aspects of my affliction. For once being middle aged works in my favour as the chances of a successful transplant improves. Having no underlying serious health conditions was also a positive factor. I could have my treatment at one of the best hospitals. To top it off, following a long and nervous wait, it turned out that my younger brother (who also lives in London) is my best donor match!

My treatment regime started on 17 April 2023, comprising of daily visits to the Haematology Unit for chemotherapy. The objective of the chemo was to eradicate cancerous cells ahead of the transplant. This proved a bit intimidating, but it was my first step to beating this disease. The assigned specialist nurse was amazing in looking after me and made sure to take me through the pre-transplant phase smoothly and safely. Fortunately, I did not encounter terrible side effects associated with chemotherapy, apart from an infection which hospitalised me for a couple of weeks. We were lucky to achieve the desired results within a month and a half, against the doctor’s expectation of three to six months. In the meantime, my younger brother turned out to be a perfect match, so he donated his stem cells. I was admitted to hospital on 25 June 2023 for a stem cell transplant. Following another phase of aggressive chemotherapy (conditioning) for nine days, I had my stem cell transplant on 4 July 2023, the day I was reborn.

In the days and weeks that followed, I experienced a number of expected effects, including diarrhoea, nausea, mucositis, hair loss and stomach pain. Those were the toughest weeks - in isolation, laying on the bed unable to speak, eat and struggling to even stand up. It became increasingly difficult for me to eat or even think of food as I lost both my appetite and taste. Around me, I could hear the cries of patients in pain in the ward I was in. I desperately waited for the daily blood report every morning to see if my blood counts started to show up. Even a tiny indication of the cells in the report brings hope, energy and excitement. This was the time I realized “it does not matter what I have in life, the thing that matter most is who I have now.” Anticipating this situation in advance, I had already decorated my room with pictures of my family and friends which really helped to keep me going. For the first time I realised how important the beauty of blue sky, sunlight, and nature is (things we always take for granted) as I was unable to gaze out of window of my room for weeks.

But my care team’s bedside manner could not have been warmer, friendly, caring or more professional. I knew I was in the right place and in safe hands. I cannot thank enough the entire NHS team. I had my day-28 bone marrow biopsy before finally being discharged from the hospital on 1 August 2023. I was so excited to be going home on what was the birthday of my eldest son. We had a big welcome back home celebration, including a family dinner at home that evening.

I am now under the care of the post-transplant team. It is taking a long time to get rid of the side effects of aggressive chemo. I lost my thick silky hairs which have slowly started to grow (though they are still grey!) and my appetite is also coming back. The frequency of visiting hospital gradually reduced from twice a week to once a month. My blood counts were holding up and the results of other necessary parameters were also encouraging. Things were steadily returning to normal until 27 November 2023 when my blood counts fell off the cliff suddenly and I had to go back to the hospital for a week. Despite the doctor’s best efforts to stimulate the bone marrow through GCSF injections, for eight days there was no response. Doctors were of the opinion that either my disease is coming back, and the graft is heading to a failure, or the Covid vaccine had caused some side effects. This brought me again to the crossroad of life with an uncertain future. However, things turned around again, and I was back on track on 12 December when my blood counts came up normal. My “journey of hope” continues with grit and grace. I know it won’t be smooth, I am prepared for any unforeseen bumps along the way. Hopefully, the toughest part of my journey is behind me, firmly in the past!

I am so grateful today for the doctors and care staff at Kings College Hospital. After being told by doctors elsewhere that I didn’t have much time left, I now find myself in remission. These NHS doctors and staff literally saved my life by delivering incredibly personalized and highly professional care at the highest level possible. I have been in constant touch with so many friends through messages, calls, and even personal visits throughout this journey. The support of my company, my colleagues at Tullow and in my exploration team, aided my fight. Now, approaching 12 months since diagnosis, I am already back to work, meeting my colleagues and friends. I am also looking forward to starting weekly football soon and can’t wait to try bowling action in the next cricket season in the summer.

My journey of hope is not complete yet and neither is my story. To get to the end of the story might take another year and half. Hopefully I will be around to share the end of this story, but if not, I am sure my friends and family will share how bravely I fought!

Having cancer has made me look at things very differently. Sitting in traffic, for instance, no longer bothers me. Standing in a queue just gives me more time to think about how lucky I am. I am still around with a hope to live a longer and healthy life. I am much more content and satisfied with what I have so far in my life. The only regret, if I can, is missing the graduation of my son who recently passed engineering degree.

In 2000 I had been breathless and tired (a problem I recall having on and off since the age 11 when I was found to be anaemic) and was referred again to haematology.

(Every now and then I would be referred to haematology in various places I lived, no diagnosis of a condition). This time I was diagnosed age 45 with MDS. My consultant did say it was a blood cancer but didn't explain prognosis and said I was very ill.

My husband and I were shocked on reading up about MDS. Talking to my consultant he gave the impression he thought my low risk MDS would progress rapidly.

I had no problem walking up the hills while I was there, in fact I had no problem keeping up with an energetic 11-year-old. We would often walk ahead and wait for the ‘oldies’ to catch up, so I know I had no symptoms then.

I had a nagging feeling that something wasn’t quite right and did the obligatory internet search.  Tiredness or fatigue that interferes with daily life – Check.  Symptoms that get worse after physical or mental effort – Check. Difficulty breathing or shortness of breath – Check. Fast-beating or pounding heart – Check. Dizziness when you stand up – Check. Joint or muscle pain – Check.

I agreed with Google. It was obvious that I had ‘Long Covid’.

All the symptoms fitted and even when I eventually went back to work, I was breathless after going up the stairs and I got tired in the afternoons, to the point I had to have half an hour on the sofa when I got home each day. It became a routine that I thought would change when I got over my Long Covid.

Jump forward to 12^th September 2022. I had booked an appointment with my GP. All my Long Covid symptoms were still present. The only changes were that my afternoon naps had evolved into an hour, sometimes two, sometimes more and I felt dizzy almost every time I stood up, rather than occasionally.

At about quarter to four, I shuffled the 500m to the GP’s surgery, having to stop numerous times on the way, to sit on a wall, or lean on a railing to catch my breath. “It’s just Long Covid and I’m fifty, so I’m knocking on a bit, this is normal, right?” I kept thinking to myself.

I had my blood taken and was told not to expect any contact unless there was something wrong. I shuffled home knowing that they wouldn’t contact me because I just had Long Covid.

At two minutes past ten that same night I was settled down watching the telly and got the phone call. “Hi, I’m the on-call doctor. I’ve got your blood test results and you need to go to hospital right now. Write this down ‘neutrophils 0.4’ and go straight to A&E”. “What are neutrophils?” I asked. “Don’t worry about that, please just get yourself to A&E” was the reply. “I’ll Google it”. “Please don’t Google it, just go to A&E”. I then Googled it and started to worry.

I went to A&E, which was surprisingly busy for a Monday night. There were all sorts of characters in there. Some were being sick into cardboard bowler hats. Some were clearly in pain, holding various body parts. Others were clearly drunk. There was an annoying chap in a wheelchair, who kept playing the beginning of the same song over and over and over again and my argument with him was the last thing I needed. There were families with crying children and a large bloke being escorted by two police officers. The only person missing was a child with a saucepan stuck on his head.

Thankfully, I was eventually seen by a doctor. He did a few tests and sent me home to get a couple of hours sleep, on the understanding that I would return for the day clinic at 08:00, in a couple of hours.

The day clinic was quickly followed by a trip to the haematology clinic with loads of blood tests and a bone marrow biopsy. It was at that point that I think I knew.

My biopsy results came back and I was told that it wasn’t ‘Long Covid’; this was a bit more special. This is MDS or Myelodysplastic Syndromes, a group of conditions where your bone marrow does not work properly and makes faulty blood cells. A type of blood cancer.

“Wow! I’m only 51, are you sure?” They were sure.

I’m now a year on, 5 sessions of chemo (Azacitidine) down the line, have a date for a bone marrow transplant and I’m optimistic for a successful outcome.

My point for these few words is that I don’t believe that I’m the only person to mistake something serious for ‘Long Covid’.

Please, everybody, if you’re not feeling 100%, go to the doctor. I got lucky, in that it was quickly detected with a blood test. If you put it off, you might not be so lucky.

Tony was first diagnosed with high risk MDS in January 2021 following blood tests he had for knee surgery that showed low counts and raised some alarms. He quickly had a bone marrow biopsy and MDS was confirmed.

At our first meeting the haematology consultant at our local NHS hospital explained clearly what MDS was, the risk that it would turn into AML, and arranged for Tony to start Azacitidine treatment straight away.

The consultant was also very clear about the problems infections could cause and told us that, if Tony felt unwell at any time, he should not wait but to go straight to A&E. They issued us with a rapid response HEAT card (History Examine Action Treat) and said we should produce this if we ever came to A&E and it instructed staff what to do with patients at high risk of Neutropenic Sepsis. The NHS guidance on NICE, the Sepsis Trust and websites for cancer charities all show that high risk patients should be admitted and put on IV antibiotics within 60 mins of arriving in A&E. We were reassured that if this ever happened, treatment would be in place very quickly.

Tony’s treatment was supported by regular blood and platelet transfusions, and all appeared to be manageable for some time. In early 2022 Tony’s white count and neutrophils started to drop considerably and his Azacitidine dosage and frequency was reduced. In spring 2022 his red cells and platelets were doing really well, and transfusions not needed. The consultants were comfortable that MDS was in remission (and actually used that word!) so they put his treatment on hold, but they were concerned and puzzled by his very low white count and neutrophils. Tony remained reasonably well and hadn’t had any infections during this time or been admitted to hospital at all. We started to think things were really OK and managed to get travel insurance and have a holiday in Florida. Throughout this time Tony continued to have weekly blood tests and he remained neutropenic.

In early Dec 2022, Tony woke up with a sore mouth and swollen face, so we went to A&E as per instructions and presented the HEAT card. He was triaged straight away but it was a really busy day in A&E and we waited 5 hours in the general waiting room before being taken through A&E and being seen by a doctor. What we weren’t told was this was actually the Urgent Treatment Centre, not A&E, and it was outsourced to a private company, and the doctor we saw was a locum GP employed by that company. By this time Tony’s face was more swollen and he was very cold, but the GP said he needed to see a dentist and he would give us a prescription for oral antibiotics. I now questioned if the GP understood Tony had MDS, was neutropenic and had a HEAT card but he insisted I take him home and book a dentist appointment. We left the hospital thinking perhaps it wasn’t a big problem but, within hours Tony became much worse and following a 4-hour wait for an ambulance was finally in A&E early the next day. The nurses there fully understood the procedure and put him on intravenous antibiotics within minutes of arriving. Unfortunately, this was too late and, following emergency surgery to extract several teeth, (in retrospect this was unnecessary, but staff felt that it could have been the cause of the infection and the quickest way of trying to clear it.) the next day Tony was transferred to intensive care with neutropenic sepsis.

I have formally raised with the hospital the way Tony was treated in A&E. They have agreed that the correct procedure wasn’t followed by the Triage Nurse or the GP and that we will never know if the long delay made his sepsis worse and the infection more difficult to control.

Following 5 days in intensive care, Tony spent a further 11 weeks in isolation being treated with multiple high dose antibiotics to try to hold the infection at bay. All the time during this his general health got worse. Finally, they did another bone marrow biopsy, and this showed that he had AML (Acute Myeloid Leukaemia). All treatment was stopped, and Tony came home early in March for end-of-life care and to spend time with his family. He passed away at home on the 19th March.

Tony and I always found the MDS site and newsletters really helpful and a clear source of information. My reason for sharing his story is to raise awareness of how neutropenic patients should be managed in A&E and to increase awareness in MDS patients that there is a standard, documented NHS process to ensure that neutropenic patients with any hint of infection should get really quick treatment. Patients and their caregivers should insist that staff follow this process. Clearly, not all A&E staff understand this or follow the protocol. I will always wish I hadn’t let them send us home that day in early December.

Pam 

In the winter of 2019 I had been referred to the orthopaedic surgeon for knee replacement surgery. Having seen the consultant I was put on the waiting list and to my pleasant surprise received a letter within two months giving me a date for my surgery. At my pre assessment I was told they wouldn’t be able to go ahead with surgery as my haemoglobin was very low and that they will have to refer me to the haematologist for further investigation.

At this point I thought I may have been anaemic and that some iron tablets might bring my Hb up to normal. I felt fine and had no symptoms of any sort at all. Three months later my Hb went down further and the haematologist arranged for me to have a bone marrow biopsy.

When the result was to hand, the consultant gave me the news that I had a blood disorder called MDS with excess blasts and gave me a booklet which explained all about the disease. Imagine my shock at the diagnosis!

I had not heard about MDS nor had any member of my family. It was so rare that nobody I knew had heard of it. I come from a South Asian country and my family back in India hadn’t heard of MDS at all. I asked both my siblings to get checked. My brother immediately had a blood test and was diagnosed with Hairy Cell Leukaemia. He has since been treated and is doing well. My sister fortunately is ok.

I was told at the hospital that if I didn’t have any treatment this disease would progress to Leukaemia. I decided to get it treated but there was yet another shock when I was told that there was no cure for this disease and that I would need to have chemotherapy for the rest of my life.

To add to my troubles I caught Covid within a few days of my diagnosis by which time the Covid had become a pandemic. Both the illnesses made me very depressed. I started losing weight and had become anti-social, not wanting to talk to any friends who called and I would just let the phone ring and go to answering machine.

Looking on Google to find more information on MDS my husband came across the MDS Support Group and suggested I join. I started reading about this disorder on their website and finding out that there were many like me who had been given this diagnosis and how they coped, helped me to slowly come out of my shell and to see life in a different perspective. The help and support of the MDS Support Group together with the regional Zoom meetings have been very useful in understanding this disease.

Surekha Kodical

In my last update I explained that I’d been an in-patient and they were treating me for pneumonia. It seems I have a fungal lung infection that then caused a bacterial infection. I was put on some strong antibiotics as well as a hefty dose of antifungals.

I got out of the hospital Sunday night which gave me a day to prepare for my friends funeral that I was taking. I felt pretty awful. I’m normally very quick in writing liturgies and personal eulogies. I’m lucky that I have this ability to sit and let it all come out in one stream. What I found was that I kept losing my concentration. The words would also start to swim in front of me on the screen. It was a strange experience. I kept at it but it took me twice as long.

The other thing I noticed was I was shaking. My hands had an obvious tremor. Also my legs were uncoordinated. If I had to step over something, I’d really wobble. On top of this when I was in the car, I’d look up and not recognise where I was despite it being a familiar road. In what is highly unusual for me, I asked my other half to drive. This went on for a few days. I felt like I was dying. I was uncoordinated and clumsy. I couldn’t concentrate and I was very shaky.

Despite all of this I was determined to take Eileen’s funeral. It was at a nice time later in the afternoon so I didn’t have to get it together too early. My lovely Maggie drove me to the crematorium and went for a wander in the grounds while I took the service.

When I write these liturgies I always print them in large font. This makes it easier to look up and connect with the people at the service and navigate your way back to where you’ve left off. This was working fine until we came to the hymn.

The family were keen to have a hymn because their mum loved music and singing and used to be on the rota to play the recorded accompaniment during our church devices. I told them all they needed to sing. The only problem was the backing track was a choral version that was set too high for congregational singing. Normally I would belt it out and try to encourage others to join in. Sadly though my lungs were not up to singing. The effort it took started making me shake from head to foot. The small print of the hymn words meant the words were swimming before my eyes and I couldn’t find my place. I had to grab the chair beside me at one point and I also gave up on attempting to sing.

It’s never happened to me before. I felt vulnerable in that moment and just decided to concentrate on my breathing. Fortunately I was able to dig deep into my soul and find the resilience and resourcefulness I needed to get through the rest of the service. I was so pleased to have pulled it off without incident or anyone noticing. I hope I did Eileen proud. May she rest in peace.

The next day I took it really easy and recharged the batteries. Then I had to go for a check up to the hospital. I explained how I was feeling and that I don’t remember ever feeling so frail and vulnerable. Normally I sleep like a log for 10-11 hours a night. I hadn’t slept for 3 nights more than a brief doze and this was also making me feel very spaced out. I told the doctor and it seems that the strong antibiotics were the culprits. Also the antifungals were causing problems so they changed both of them and I slowly started feeling normal again. It’s not until you’re really sick that you realise the huge impact that some of these life saving drugs have on the rest of your body.

The current additional meds will need to be taken for around 3 months. Healthy adults do not get fungal lung infections. It’s something that only happens to immunocompromised people like me. Fingers crossed there’s not too much lung damage.

I’m feeling slightly sad just now at the impact all of this has had on my voice. I had to give up so much over the years. Football was a hard one to let go of. Hill walking and circuit training and bike riding all have gone by the wayside. What I’ve held onto was my singing. The last couple of years with covid put pay to communal singing for me. The hard thing for me now is that I just don’t have enough puff. I’ve been struggling to get to the end of the line of music before taking a breath for a while. If you sing with others you can hide that you a breathing in the wrong places. These days though I can’t push enough air out of my lungs with my diaphragm to make a good quality sound. Music is the language of the emotions and it’s speaks for us when we can’t put into words how we feel. It’s also good for you mentally and physically. I really miss it and don’t feel I’m ever going to get back to be able to sing in cathedrals when my old choir covers the cathedral choirs for absence.

On this rare diseases day I wanted to share with you how debilitating it is to have a rare blood cancer. Then after transplant to have rare side effects like losing my hearing and the ongoing battle with GvHD (graft versus host disease) and now lung damage due to a fungal infection. All these things are rare and people like me are beginning this journey every year. The big cancers of breast, lung, bowel and prostate take the lion share of cancer funding. The rest of us have to fight our corners to shine a light on to the issues.

Please help us share our stories of living with rare diseases so that funding is given equally and also so that people begin to recognise the early symptoms of blood cancer. In case you don’t know what they are its:

• fatigue
• breathlessness
• bruising
• night sweats
• prone to infections

If you are experiencing any of the above, please see your doctor and ask for a blood test. This will be enough to show if there’s a problem that needs further investigation.

Thank you to everyone who has helped me with living with my rare blood cancer. My family and friends are an amazing bunch. I’ve also met many dedicated medics. I’m really proud to be part of MDS UK which does so much to demystify this appalling illness and bring comfort and support to so many. On this Rare Diseases Day 2022 I dedicate this blog to Sophie and all the staff and volunteers at MDS UK. You will never know the difference you make to so many. Keep going all of you, we need you and the world needs more people like you too.

In June 2015 I was diagnosed with MDS RCMD, it was something I had never heard of.

The only symptoms I had had up to the diagnosis was bad mouth ulcers, really big ones. This led my GP to run some blood tests which showed that my platelets and neutrophils were low.

I was referred to the Northern Cancer Care Centre at the Freeman hospital. It was there that I had the first of many bone marrow biopsies over the years. The first bone marrow biopsy confirmed that I had MDS RCMD.

My blood counts slowly dropped over the following years and my fatigue and infections increased. As my neutrophils fell below an acceptable level in 2019 I began a course of regular GCSF Injections. These gave my neutrophils a boost.

However, during August and September 2020 my white cells started to increase really quickly, a bone marrow biopsy confirmed that the MDS had transposed into acute myeloid leukaemia.

On the 5th October 2020, after becoming really unwell & losing a lot of weight, I was admitted to ward 33 of the Freeman hospital at 8am. I was fitted with a Hickman in theatre at 1pm. I had my first dose of CPX chemotherapy at 7pm that evening, it would prove to be a very tough 5 1/2 weeks.

I had intensive CPX chemotherapy doses but I didn’t lose my hair- this time. There were a few ups but mainly downs such as infections, Neutropenic sepsis, joint pain, nausea , severe mouth ulcers, rashes &, shall we say, the unmentionable ‘toilet issues’.

Due to infections I had to have x-rays, scans & ultrasounds to check where these infections were. It was also the only time I was allowed out of the ward.

My blood counts were basically obliterated by the chemotherapy so the leukaemia cells could be killed off. Blood & platelet transfusions were a regular, almost daily thing. Throw in some intravenous antibiotics & fluid drips plus regular obs. It felt like I was always attached to a machine.

Covid:"Nurses, Drs, radiographers and staff on the ward were amazing, always there for you"

Covid brought its own set of challenges. A couple of times I had a cough and was almost immediately popped into an isolation cubicle until the Covid test came back, negative luckily. With these spells in isolation & visitor restrictions & it got to be a lonely place at times.

However I always felt cared for, I was surrounded with love, affection & care from my family & friends through cards, messages and social media. The nurses, Drs, radiographers & staff on the ward were amazing, always there for you no matter what was happening.

Also the BMS lab staff were always there to process samples, bloods & the regular covid tests.

I found I could cope with the physical side of being very ill, however the mental side was much harder. It was made harder still with covid restrictions on visitors, but at least I could have one nominated person, the hardest part was speaking to my daughter and son in law via the phone, through the window, whilst they stood in the rain on the car park. That really crushed my soul and spirit. However the nurses and Drs were always there with their unending support. I love them from the bottom of my heart. I cannot thank them enough.

"My preparations to have my stem cell transplant"

I came out of hospital on November 10th 2020. On the 16th November 2020 we met with the transplant team at the Freeman to discuss my preparation to have my stem cell transplant. During my stay in October we had spoken about my transplant and possible donors, they’d got several 9 out of 10 donors but had asked if my daughter, Aimée, could be tested to see if she could be a HAPLO match. I also signed the treatment consent forms and what seemed like a contract that I would finish the treatment.

The following day I had another bone marrow biopsy to ensure the CPX chemotherapy had killed off all the leukaemia cells.

On the 19th November Aimée had a medical to see if she was able to donate.

On the 25th November we attended the Freeman for my “work up” chat. I had lots of bloods taken approx 14 vials, then spoke to the radiologist to talk through the risks of the total body irradiation, TBI (Editor's Note: TBI is a type of radiation therapy, given to the entire body. TBI is often used with high-dose anticancer drugs to help prepare a patient for a stem cell transplant) and to sign the consent forms.

Then it was the heart unit for an X-ray of my chest, next up was a lung function test, then across to another department for an ECG. After that it was off to the radiology department to be measured up for the TBI,they tattooed a small dot on my chest ready for when I would have the TBI. It was good to have my wife with me, it helped to process all the information we were being given.

On 27th November I had a new Hickman line fitted at the Royal Victoria Infirmary, RVI in Newcastle. All went to plan, it was a worry having it fitted but I knew it would be a blessing when I was going to have my treatment.

On the 28th November - 1st December Aimée had to go to the Freeman for GCSF injections to boost her cell counts and on the 2nd of December Aimée donated her cells, what a special thing to do. Aimée was very brave to go through the donation process.

I was re- admitted to ward 33 on the 4th December, this time to an isolation cubicle, cubicle 2. That evening I was given my first dose of chemotherapy, fludarabine and cyclophosphamide.

The following day, 5th December, I had my 2nd dose of chemotherapy, however this time I had a reaction to the cyclophosphamide so they slowed down the drip rate and gave me an antihistamine.

I had my 3rd dose on the 6th December, this time just the fludarabine. The following day, 7th December I had my 4th dose of fluradarabine chemotherapy, I was now starting to feel nauseous, however I hadn’t been sick.

The next day I had my 5th dose of fluradarabine chemotherapy, I was starting to feel quite unwell.

On the following day, 9th December, I was taken down for the total body irradiation, 8am sharp. I was placed on the top of what appeared to be a bunk bed. I then had extremely cold Vaseline packs packed around me. I was irradiated on one side then they turned the bunk bed around and they did my other side.

When I got back to the ward I was completely shattered, I slept all the rest of the day and night.

10th December and it was transplant day, finally I got to receive the cells Aimée donated, well some of them anyway. Some are kept aside in case I need a top up.

The transplant went ok, it was just like having a blood transfusion. The CNS transplant nurse was with me, also a chap from the labs from the RVi who had brought over Aimee’s cells in the deep freeze pod unit.

The following two days I was completely wiped out, I was hardly able to get out of bed.

During the following weeks, I also got a small bleed behind my eye, I had to go to the eye department at the Freeman. The bleed was due to my platelets being so low, at one point they were just 12. I needed quite a few platelet transfusions to ensure my platelets were kept at 50.

I also lost my hair due to the chemotherapy, for some strange reason it didn’t bother me. I got further infections but the staff were onto them very quickly with intravenous antibiotics. The staff were absolutely wonderful, always there for me, their professionalism was first class. I don’t know where I would have been without them.

On the 13th & 14th December I had a further two doses of cyclophosphamide chemotherapy. During this period I managed to get an E. coli infection and my temperature spiked to 38.5. I felt terrible.

On the 15th I started on the anti rejection drugs, Tacrolimus.

On Christmas Eve morning I dressed up as Santa, stepped out of my cubicle and just said ho, ho, ho, it really brought a smile to all the nurses at the nurses station. It was shift change over, so they were all there. I felt awful really unwell but I was determined to do it. Just for them.

I was in isolation for approx 5 weeks, I spent both Christmas and New Year in cubicle 2. I came out of hospital On the 6th January 2021, it was such a relief to come out but there was still a long journey ahead. That’s for another time.

I’d kept a journal of my time in hospital and my continuing journey afterwards, it often saved my sanity to be able to download all my feelings onto paper. I could cope with the physical side of being ill, however the mental health side is just as difficult to get through, perhaps even harder.