photos: pablo

I’m rarely ill, if I’m honest my schedule doesn’t allow for it. Maybe a cold or tickly cough per year *touches wood*. Although, that doesn’t mean much when trying to predict the fortune of my long term health, and I know first hand how it can all change in an instant. This week I was in hospital hooked up to the machines and it was all my choice. Here’s the story.

 

Back in January 2019, Rhea had an idea to start donating blood. This plan was soon thwarted due to the fact she weighed less than the minimum weight required to donate (50kg). Seeing how passionate she was about it, I volunteered as tribute in pure Katniss Everdeen spirit.  On my first donation I drove to the donation centre at Southampton General and filled out the long form with a series of ‘no’s’ apart from the ‘have you travelled outside the UK in the last twelve months’ box where I had to trawl back through my memory and list the eight or so times I had left the country. The process was seamless as expected, the staff extremely empathetic for a donation novice. I pushed out my pint in little over 10 minutes, coming out of the chair I was a little hazy but nothing too bad. I remember thinking to myself, “why did I wait 30 years to do that”, well 13 I guess if you take into account that you can’t donate until 17, but the sentiment remained.

 

A few weeks after the donation, my donor card and pack came through the post. My blood type, B+. I never knew my blood type and had no real need to find out but this was a significant step in what was to come. My mum was also B+, for the first time in 14 years since her passing I found out that her blood actually ran through my veins. I took an evening to reflect.

During my second donation, the nurse showed me a tag she was attaching to my donation. She told me it was the first one with the tag that day despite the fact I was one of the last in the donation centre. She said that my blood was Cytomegalovirus (CMV) free; CMV is a common virus in most adults but can be harmful to babies. The tag meant that my blood could be used in a direct transfusion for babies if needed.

 

I donated four times in 2019 and it was after the fourth donation in September that another unexpected event occurred. The first time you donate blood you tick a number of boxes, I’ll be honest and say that I didn’t really pay much attention to these boxes, but I continued to tick anyway. One of these boxes was for the British Bone Marrow Registry (BBMR) to check my blood against the waiting list for people requiring a bone marrow transplant. A letter had come through the door informing me that I was a potential match for someone,  this was very early days but the letter described the two possible processes I could go through; bone marrow harvest or stem cell collection. Bone marrow harvest is a general anaesthetic; a corkscrew like needle is inserted into the rear of the pelvic bone, and bone marrow is literally sucked straight from the soft inside of the bone using a syringe. The stem cell collection procedure is much different; starting four days before the procedure, you have one injection of G-CSF per day, G-CSF is a sort of protein which instigates stem cell creation inside the bones and pushes the cells into the bloodstream. On the fifth day you are hooked up to a centrifugal machine which takes your blood from one arm, spins it, separates the red blood cells from the stem cells, collects the stem cells and pushes the red blood cells back into your other arm.  Obviously I was a little anxious, either a general anaesthetic or pumping a substance into my body for four days didn’t sound that appealing and the positives and negatives of each procedure kind of balanced out. On one hand a general anaesthetic is very invasive but the procedure is over quickly and I wouldn’t know much about it. On the other hand I wouldn’t worry about being knocked out but I would have to put up with the various side effects of G-CSF which vary from person to person.

 

I put that to the back of my mind and contacted BBMR and agreed tentatively to proceed to get my blood further examined. For this I visited my GP and donated around sixteen small vials of blood which were sent off for testing. BBMR informed me that my blood was “reserved” for 90 days and that I couldn’t further donate in this time, in case I was the best match. From what I understand a lot of other people get tested when a patient needs bone marrow, they take the closest match with regards to some sort of protein in the blood. 

 

Ninety days passed and I hadn’t heard anything, and it was more like 100 when I went back in for my fifth blood donation. A few days after I received a call from an unknown number, the lady proceeded to tell me that I had been selected as best match and that they wanted to go ahead with the procedure. I was a couple of days away from the start of penultimate session of university exams for my final year and my head was a bit full. BBMR were fairly forceful with regards to telling me I needed to make a decision ASAP, for which I totally understood and respected. I agreed and a counselling and medical session was booked.  BBMR were very accommodating and between us we managed to find a suitable date sandwiched in between my work and studies, which have been taking up seven days of my week since October. I decided to take time off work and my all expenses paid trip to The London Clinic was scheduled for 30th January. 

 

On the day I made my way up to London alone, I had to go the long way from Southampton via Gatwick Airport due to the train derailment at Eastleigh, which doubled the journey time. On arrival I quickly realised I’d never been in a private hospital quite like this, and I’ve been in a lot of hospitals! The London Clinic is one of the most prestigious hospitals in London, famous for treating royalty and big names. I went up to the third floor to Haematology where I met my consultant haematologist. It dawned on me, after a quick google, this was the first time I had been around a consultant who was a specialist in the exact same cancer mum had died from since that time. My consultant was an incredibly nice man, he listened to everything I said and was taken back when I explained about my mum, he left the room, I don’t know where he went for those five minutes but I think it shocked him a little bit when I told him my mum had died from cancer at 38. I told him that my mum was the recipient for the exact procedure I was about to go through in around 2003, and that it didn’t work for her. When he returned he explained to me that he could see how motivated I was to do this but that I should think carefully about what I was going to sign for. He explained that there was no benefit  from this procedure for me apart from "a halo around my head and a warm heart". He went on to say that the recipients doctor had asked for 3 pints of my bone marrow via bone marrow harvest as the preferred route, over half the bone marrow in my body. I was a bit confused because I thought that I had a choice in procedure, and suddenly I felt backed into a corner with one option. However, this was soon alleviated when he said that because I had donated so much blood in the past year he would not recommend this route, he was looking after me, he knew how motivated I was and how much university meant to me and knew I couldn’t afford to lose any time.  Going through with the bone marrow harvest would have left me anaemic for months. He advised me to chose the stem cell collection route, due to the nature of this procedure the red blood cells get pushed back into your body, therefore little iron is lost. Before I signed the papers he warned me, when I sign on the dotted line the recipient starts undergoing chemotherapy in preparation for the transplant, if I was to pull out after agreeing then the patient would be in serious trouble and could possibly die. I signed. His caring nature convinced me I was in good hands. This was real now, my mindset changed, I could potentially save somebodies life. Having been through the procedure with my mum I know what it feels like to be on the opposite side of the situation. The relief when we found out there was a match available for her to have another chance at life. It’s impossible to put a valuation on the gratitude we felt for someone volunteering. This was now me. 

 

With my medical and counselling passed, the procedure was set for 27th of February which was worked in and around my timetable. BBMR cover for loss of earnings and it was inevitable that I was going to lose working time. The nurse from private nursing company Alcura contacted me to start my G-CSF injections on Sunday 23rd of February. By the time it came around I wasn’t that anxious, I just wanted it to be over. The day after the first injection I began to feel it. Bone marrow mainly resides in the pelvis, ribs and other upper body bones, it was these that started to ache, and boy did they ache. The only way I can describe it is like my hips trying to detach from the rest of my skeleton, if you’re a man, a constant feeling of being kicked in the balls except for in most of my upper half. Occasionally I’d get a sharp twinge from around my stomach area. Night two I didn’t sleep well, paracetamol wasn’t touching the achey pain so it was just a case of grit and bare it. I stayed at home over these days, I could never have  gone to work or to university. I had plenty of project work to be doing so that kept me occupied. Day three of injections was much of the same, no sign of the symptoms dying down, apparently most people get it worse on the final day of the injections so I had that to look forward to.  

 

Thankfully, the last day was no worse than the previous, one hour after the injection at my flat I was off in a taxi with my friend Pablo, I’m extremely grateful for him giving up his time to accompany me and be part of this process. He’s also an extremely talented photographer so I was hoping he could capture a few moments. We took the 1800 from Southampton to Waterloo and by this time I was far from comfortable, it was the first time leaving the house in three days and I felt it. On arrival in London we took a short tube to Regents Park and checked into the Holiday Inn just down from Devonshire Place. I actually got a good nights sleep in the hotel, at least seven hours, up from two hours the previous night.

After breakfast at the hotel we headed for The London Clinic and arrived just after 0830, I met my nurse for the day - the same one who took care of me for the medical. The machines were all set up ready to go and I had a nice donor gift pack waiting from me from BBMR, which was a much needed pick me up and reminder of what the previous few uncomfortable days had been for. I had my vitals checked over again and my chemistry taken, my white blood cell count had increased from around 8x10⁹/L to 47x10⁹/L which showed the injections had been successful. The lines were inserted into my arms, the fistula (bigger needle) which drew the blood from my body to the machine in my left arm, and the cannula (smaller needle) transporting the red blood cells back to my body in my right arm. My left arm had to stay straight and still but I was able to move my right arm freely. The nurse explained I needed to donate 4 million stem cells and because the recipient was 25kg heavier than me I sensed this wasn’t going to be easy in a single four hour session, still I had my fingers crossed I wouldn’t have to use the reserved overflow day and do it all again. The collection process lasts for four hours, but that doesn't include preparation and testing time, The London Clinic only allow the machine to run for four hours per day to protect the patient, rather than doing an extra long day, they'd use the reserve day if the donation wasn't sufficient. Once started I went through a few different phases; when the centrifuge started I could feel my bones quite a lot, like a really strong but dull ache, when the centrifuge stopped to process the stem cells in to the bag I felt waves off tiredness. Lunch at 12 perked me up a little bit with some Purbeck ice cream and Pablo and the nurses kept me in good spirits. I had to go to the toilet three times during the procedure due to the amount of water I was drinking, this wasn’t easy even in tracksuit bottoms. Trying to keep one arm exactly still and pull off your trousers and underwear whilst lying on a bed is a challenge, but I managed it three times, damn bladder. It seemed to go quite quickly in the end but I was delivered with the slightly deflating news that I had only managed half of the stem cells required, so it would be back the next day for another full sitting. Not only that but I had to have a fifth injection of G-CSF in order to keep on producing stem cells. At around 1500 we left the clinic and headed back to the hotel via a very nice Brazilian in Fitzrovia. It was another night of tossing and turning as I was still very uncomfortable.

On the second day of the procedure I was the only person in the ward, I had a different nurse who was equally as caring and explained every single detail to me. I switched arms with the needles so each would have equal time with the blood going in each direction.  My cell count was higher on the second day at 58x10⁹/L so we were hopeful that I could provide the full amount they needed. I asked about the process for the recipient and the nurse told me that often the BBMR donations go to the United States, if this was the case they would leave the clinic immediately and effectively be on the next flight. I had a quick thought to myself about how much the entire process must cost, from the cost of organising me, the nurses/doctors and facilities, the equipment and the transport. We agreed that it must easily exceed six figures. Much like the first day, I had to chew on some calcium supplements as my lips started to tingle as the stem cells were collected. It seemed that my bag of stem cells was fuller on the second day but volume of the bag doesn't necessarily equate to more cells being collected.  I was very impressed by the staff thoroughly cleaning all the equipment and setting up next weeks donation kits in the time they weren't tending to me.  For some reason I had really perked up by the end of the donation, I'm not sure how considering how mentally and phsically drained I was. At around 1415 I was discharged and said my farewells to the amazing staff at The London Clinic, they made the process simple and I always felt that I was in amazing hands, they also showed a lot of gratitude for the donation. On the train home I recieved a call from one of the nurses to inform me that I had reached the desired donation target of four million cells which was amazing to hear. We got home around 1700 and it was clear I was going to need several days of recovery, I was told not to vigorously exercise for a few days and to take in plenty of dairy.

This was a super humbling experience, one that came out of the blue but was vitally important in giving someone a chance to stay alive. At first I was quite worried about my health, but the rigorous systems and checks eliminate any danger before anything actually happens. The side effects to G-CSF are different for everybody and talking to others I had symptoms on the worse side of moderate, but I was never in pain, just very uncomfortable.  BBMR have been amazing throughout, they are an extremely professional and personable organisation who catered for all my needs, all expenses during the week are covered including any loss of earnings for the donor and their companion. They provided me with a certificate and a pin badge as well as a lovely hamper of fresh fruit on my return home. 

 

More donors are needed and I hope that this honest account will inspire people to go and at least donate some blood and tick that BBMR box.

...

Grief is non-linear, it never heals, it scars. The scars are only as deep as you allow them to be and if you pick at them they’ll get deeper. In my adult life I have found my own way of dealing with things, my mums life was a springboard for the success of my brothers and I, we look back over our shoulders with loving fondness but we stay facing forward towards the next challenge. Her strength gave us that guidance.  All this time I’ve wanted to say thank you to my mum for the life she led me into but I’ve never been able to do so. I’ve found ways to say thank you by completing challenges and milestones in life in the spirit of her name, the morals she stood for and the love in her heart. Actions speak far louder than words;  I’m less known for my talking as I am for my doing but this was something I had to share. To know that my mums blood has the chance of saving someone from the very illness that took her life will never be superseded.

To start the process click on any of the links below.

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© 2020 Eddie Edmonds