“Transplant”
Personal Experience Of A Transplant By
The Reason
After reading several forums online about stem cell transplants, as well as people's various questions and answers. I haven't managed to read a full testimony from start to finish, what it's like to go through, or to experience the procedures involved. I want to share my version of the events, for those who are going to start their own journey of a stem cell transplant (SCT). Hopefully, this will provide some insight and reassurance to those who need it. This is all based purely on my story, my feelings, and what I've been through. Each person will, of course, have their journey but you are not alone and there are people all around us who have faced and overcome the same challenges that we will.
History
The Year is 1989. I was 9 weeks old when I was diagnosed with Juvenile Myelomonocytic Leukaemia, at St James Hospital in Leeds, the illness that would change my life forever along with the lives of those around me. Then at 18 months, the diagnosis changed to myeloproliferative disorder which causes blood cells to grow abnormally in the bone marrow. I don't remember any of this but I can't imagine the struggle that my mother went through. Unfortunately, the details of the diagnosis predate any electronic records which makes it difficult to understand what happened in my younger years, but to be honest I don't think I would want to know or that it would change anything if I did. I remember being at the hospital, the bone marrow biopsies, the smell of the knockout gas they used, held tight by my mum so they could take my blood or give me medication through injections. The VCR with 3 films to choose from, usually the sound of music was the only film left and then it would get taken to the next room once finished. The ride home falling asleep in the back of the car. One memory that has stayed with me is waking up after my splenectomy at the age of 7 and asking for my mum. My spleen became incredibly enlarged and they did surgery for managing symptomatic splenomegaly. I am now 15 and still in and out of the hospital with appointments and blood samples were taken every few weeks or so. To explain my condition you need to understand what type of blood disorder I have. In a sense, there are platelets which help with blood clotting, white cells for fighting infection and haemoglobin to carry oxygen in the red blood cells. In my case, these overproduce constantly mostly my platelet count and white cells. Let's take a healthy blood count, you have platelets at 135-317. Next, the white cells are at 3.4-9.6 and finally, the haemoglobin is at 13-16. Now compared to mine in the same order from my last blood count Plts 1295 Wbc 12.6 HB 13.1 however this will vary on each sample taken. To combat these abnormal blood counts they have a chemotherapy treatment known as Hydroxycarbamide, prescribed to me 4 tablets per day. Again the dose would vary on my blood count but they used this medication to have some control over my blood production. This stayed the same for many years until 2013 when they did a routine biopsy of my bone marrow and found that it had begun to scar significantly.
Myelofibrosis
In 2013 they began to notice the fibrosis also known as scarring on my bone marrow, however, the diagnosis continued as myeloproliferative disorder despite knowing that my illness was evolving. This led me back to St James Hospital where a Stem Cell transplant began to be discussed, I went through several tests and appointments from which absolutely nothing came of it. After all the tests and excitement about a chance at a healthy life a couple of months later and their result was "You have lived with this illness for 24 years so who is to say you can't carry on living with the illness and have some form of normality". The risk outweighed the reward meaning I was left to carry on suffering in pain, exhausted and weak for another 8 years. Until June of 2021 when my health deteriorated even more. I became worse in general requiring a stick as I struggled with my mobility, I couldn't get the strength to get out of bed. I was losing weight and started with night sweats. It was so hard to carry out this act of waking up and saying I'm okay with a fake smile when really all I wanted to do was sit and cry, knowing that tomorrow I would have to wake up feeling the same way. The worst part of it all was that I have a 7-year-old son who has an unlimited supply of energy and I just couldn't look after him the way he needed me to. I hated it, this deep and utter disgust at myself for no longer being able to enjoy time with my son. I could no longer focus on anything positive with the constant pain and fatigue taking over my life. I knew something was wrong, I could feel things were different and I could see I was getting worse. I rang my specialist nurse and told her what was going on with me so she said let's get you in, we can do a biopsy and take it from there.
I went into Castle Hill the next day, had my blood taken and the bone marrow biopsy and then would go back the following week to discuss the results. Unfortunately, things had become worse and the scarring in my bone marrow had increased leaving more dead bone marrow than working. The Dr explained that it has officially been re-diagnosed as myelofibrosis.
What is Myelofibrosis? It is an uncommon type of bone marrow cancer that disrupts your body's normal production of blood cells, causing extensive scarring in your bone marrow. Leading to constant severe weakness and fatigue and an incredible amount of pain it is considered to be chronic leukaemia. Unfortunately, this now carries a poorer prognosis. The reason for being so poorly was that my body had been working overtime, the bone marrow I had left was being pushed to its limits and this is why I felt so appalling. The only action we had left to take was the SCT, meaning I needed to have all the tests and appointments again. They changed my medication to Ruxolitinib, another form of chemotherapy which can help with fatigue and night sweats. I had my referral to St James and the journey of my very own bone marrow transplant had begun.
Pre Transplant
23rd of July 2021 This was my first initial appointment to discuss what was going to happen and the hopes for the outcome along with the risks involved and the long process to get to the actual transplant, Day Zero. I found this appointment would have been more beneficial if I hadn't had the same back in 2013. However, it was good to refresh as it had been 8 years and in medical terms, so much has developed and changed significantly. The discussion began on approaching an allogeneic stem cell transplantation for myelofibrosis, we discussed the basic transplant process along with the potential risks and benefits. That the Transplant offers a potential long-term control over the disease and possibly even a cure, is all I have ever wanted to hear for 20 years. The delight in my heart from hearing just those few words was indescribable but then it is associated with significant risks after all and we went on to talk about the alternate treatment options of the poorer prognosis. Then we moved on to the conditioning regime which is 9 days before the transplant. They will use chemotherapy and possibly radiotherapy to kill the unwanted bone marrow to which he told me again the lovely side effects that come with the chemo which are vast but the main ones I remember such as nausea, vomiting, inflammation and blistering of the mouth and throat, diarrhoea and hair loss and if needs be they will feed me through a nasogastric tube or the Hickman line. Then the conversation became a little surreal and how this could potentially be life-threatening there is a risk of infection from bacterial, viral or fungal. Veno-occlusive disease of the liver, organ damage to the point of having a colostomy bag or dialysis, even a tube down my throat to help me breathe. He did kindly say that whilst they are generally reversible they can be permanent and result in long-term support. Another massive risk factor is Graft Versus Host Disease (GVHD) which can occur in the first 3 months post-transplant it can affect any organ but mostly involves the skin, gut, liver and eyes and this happens to 20-30% of patients again this can be long term affecting your quality of life, it is basically where the body rejects the new cells and starts to fight them off. Then the whole process has a 10-15% chance of failing altogether so the donor cells don't take and the Transplant fails. If that wasn't enough to scare me we carried on discussing the possible late effects of the transplant. This is up to 3 years after when you can get late infections, secondary cancers, organ dysfunction, and cardiovascular disease, you will become infertile and have an overall survival rate of 30-60%. However, all I can hear is "even a cure" that's all that is in my head. I know the risks are incredibly high and yes I am scared, I have doubts but the truth is I need the chance to have a better life. Not just for me but for those who I love. I want to be a better father to my son, a dad who can run, chase and play without becoming exhausted and needing to rest after an hour. I want to show him that his dad is hardworking and can provide for and protect him and if this Transplant gives me that chance, then let's do it. Isolation will play a part in the transplant due to having no immune system for 6-8 weeks when you are confined in one hospital room. This will be a massive challenge for me as no visitors are allowed but thankfully we have technology so I will be able to Facetime my family and friends to help me get through each day.
Then we went on to Recovery so after leaving the hospital if all goes well. Between 6-8 weeks. I will be home however, for the next 4 months or so I will have to attend weekly appointments which means travelling to Leeds every Monday to see how life is going. Monitoring my blood which may involve transfusions or other forms of treatment. Since my body will be new I will require all my vaccinations again including all my baby ones since they will no longer be in my immune system.
They anticipate that by 6 months I should be able to return to some normality including work and hobbies and that support from my family and friends will be a vital process of this. Finally, he arranged a visit in 8 weeks once I have gone through all the various tests to help decide on an action plan to move forward. The hospital will begin a search for a good donor match. On the face of it, I am a good candidate for stem cell transplantation and given the natural history of myelofibrosis, it would be best done while I am as well as possible given the risk of progression to acute leukaemia
Testing Begins
After going home and trying to take in all the information I had been given. Which was a challenge in itself as the hospital appointments poured through the letterbox. I am used to a single appointment every 2-4 weeks but I didn't realize how popular I had suddenly become in the hospital scene. First and most common blood, bloods and more bloods 16 bottles at Leeds 16 bottles at Castle Hill. I can't explain most of them. The only ones that I know are the test for a purple top containing a full blood count and a gold top for liver and kidney function. Unfortunately, I can't explain the others to you but just be prepared for lots of blood tests. Secondly is the bone marrow biopsy which I have previously mentioned is the most unfavourable. The basic description is to imagine a corkscrew being inserted into your pelvis. I can't describe the pain you feel, you can't feel the needle inside you. It's more the pressure they have to put into getting the needle inside your bone to take this tiny jelly-like substance. This is definitely my least favourite procedure but I've had more than a few over the past 32 years so I know what to expect which doesn't help but it gets me through and it only takes 20 minutes or so. Thirdly we had the lung function where you are in a little box with a tube attached to a mouthpiece that is used for you to blow out or suck in air with absolutely no problems. A little light-headed at times but overall nice and easy. Fourth was an echocardiogram and an ultrasound which were done simultaneously. It involved laying there with some sticky pads on my chest and some jelly to take pictures of my heart again no bother. Fifth appointment: a computerized tomography (CT) with my scan. It was used to check my organs in the torso area. They used the dye put through a cannula. It was a really strange feeling as it sent a warm sensation throughout my body and made me feel like I had wet myself, bizarre. Again no bother just laid there while the spinny thing zoomed round me taking pictures. A Skin biopsy which I found fascinating watching them remove a small round piece of my skin using a scalpel. It did require stitches and after the bruising did hurt but they numbed everything so during the procedure I couldn't feel a thing, they took the skin sample to test it and see whether the bone marrow transplant would be a viable option or if once they had placed the new stem cells in me my body would accept them instead of rejection, but also how much chemotherapy I can take without causing too much damage which will be used in the week prior the transplant in the conditioning. The most uncomfortable and upsetting test I had to do was the fertility test, since after the transplant from the treatment the chance of conceiving a baby naturally goes down to pretty much zero, I wanted the chance to have another baby after the transplant so my son can have a brother or sister plus I just love being a father as it's all I've wanted since I was young. However, after 3 sessions of giving samples in a room next to the staff room, I could hear people making cups of tea which helped massively by the way while trying to ejaculate into a tub. However, it turned out that after years of treatment, it has already damaged and killed most of my sperm. It was really hard to hear, to be honest. I am so blessed to already have my son but then it would have been nice to be able to experience being a dad to two. The good news is that they managed to save just enough twitchers to complete 2 cycles of IVF so hopefully, that will give me a chance even if it is a small one.
Waiting Game
Now all the tests are complete I went back to St James to find out what happens next and I got told to just go home and wait. I understand how much must be going on behind the scenes al; various tests that I won't know about meetings about myself as a patient. There's the donor who they will need to test to make sure they can get a 10/10 match, so much preparation work that I won't understand and all I can do is just wait. This so far has been the hardest of the whole experience. Imagine being told you need a heart transplant to save your life but just go home and wait for us to contact you. Well, you can imagine how frustrating and hard this feels especially not being at work. My days consist of existing instead of living, each and every day several times I will check my phone and emails along with the daily post hoping that it will be the day they gave me a date to begin the transplant. Unfortunately, it's been 5 extremely long months and still no date. I have been told that they are hoping to begin in December, they have had their final meeting with discussing more tests or if they are all happy to go ahead and that the results of the tests have all come back positive so after a 5-month long wait hopefully soon we can begin.
The Wait Is Over
I received a phone call on the 19th of November saying that they have finally put in place a date to start the transplant on the 27th of December. The nurse did say that this could of course change due to it being around Christmas and COVID is still a part of our lives. Also, the donor still needs to voluntarily give himself to harvest his bone marrow and people have their own commitments. However, she did say that you get some donors who take it seriously and despite having plans will drop everything to come in and help. It could be earlier or later depending on the coming weeks. I will still need to get my Hickman line fitted and a pre-transplant appointment at Jimmy's but if all goes well and according to plan and there are no changes then in 5 weeks we can begin the transplant procedure. This is what I mean by the worst part of all of this. The Transplant team rang again on the 24th of November and it has now been moved to the 3rd of January due to the donor not wanting to be in over Christmas and New Year but he is happy to be involved and pleased that he can help, which is amazing news and I'm so grateful to this stranger for been willing to help try and save my life. The Transplant coordinator said that I will have a pre-transplant appointment on the 17th of December which is the final one just to make sure there are any queries left. However, I also need to visit castle hill for the pre COVID swab and then on the 21st of December I will have my line fight however again this may change as I'm not going into Leeds until the 3rd of January which means it will be fixed for 2 weeks without been used this could lead to infection so obviously they want to do it a week prior but bank holidays and various things are going on so this date may change as well. They have told me the Transplant will begin on the 13th of January which means I will have 10 days worth of chemotherapy first. On the 22nd of December, I had my dual Hickman line fitted and it was incredibly painful and is still extremely sore. It felt rather intimidating at first with several people moving all around you and then preparing you for surgery although only a minor one. They laid me down and did an ultrasound on my neck to find the correct vein on the right side of my neck first but unfortunately, they couldn't seem to see the vein so they put the line on the left side. They did use a local anaesthetic to numb the area and made the first cut on my neck and the second passing the line down the vein and then out through the second cut towards my collar bone. It was a bizarre feeling, it felt like I was getting a camera down my throat but at the side of my neck. However, it was incredibly painful. Once the line is inserted they stitch both wounds shut in to hope that the skin will heal around the tube as it will remain in there for a couple of months. The day after I had the line flushed with saline to stop the infection. It was a big realisation after it had been inserted that there was no going back now and that the line will be used for the chemotherapy and transfusions and taking blood and the transplant itself.
A Gap In The Plan
Unfortunately during the period over Christmas leading up to the transplant I had a COVID test 4 days before the transplant was going ahead then on the 29th Of December 2021, I received a phone call confirming I tested positive. This news seriously threw me off. I couldn't believe that we got up to the point of getting in there and starting to be let down by this disease that had never affected me throughout the 2 years prior. I was isolated like I had been told to be and fully vaccinated. The only places I was going were hospital appointments. So again I waited. Thankfully I was ill for 2 days with flu-like symptoms. I was finally negative and rang the hospital and they told me we aren't going to go ahead with the transplant as it was now too dangerous, I couldn't believe it I was so devastated having this hope just taken away from me no mention of another date or if there was it was going to be another 6 months or more. This led to me having a minor mental breakdown and I refused to go to the hospital, I just couldn't take any more disappointment or be let down. I have spent 32 years dealing with this day in and day out, and I was exhausted. After a few days I got my head together and thought this time I will not put my life on hold. I will try to carry on the best I can, which I did. For the next 3 months, I spent time with my son, and my partner and I went to see some live music. I went back to college to do my pottery, even bought a wheel to use at home and started creating teapots and vases. Then on the 4th of March, I got a phone call from Leeds saying I have a date and to come in 2 weeks. This was it again although this time I carried on with my life and told myself it's going to be okay if something happens again and we get pushed back it doesn't matter we will keep moving forward until it does. Then I had my line refitted on Tuesday the 15th of March and was in hospital on the 18th of March 2022.
I’m Just Soggy From The Chemo
So first impressions are okay, not a bad size room with a shower and toilet in the corner, a tiny mini fridge and a little wardrobe, and a window. However, the idea of spending 6 weeks in this room is a bit daunting as nobody told me I could bring anything I wanted like a duvet and snacks and drinks a kettle tea bags sugar milk all that. The only things I thought to pack were clothes and my laptop, the idea was that I could write this and keep my thoughts and information written down but also watch Netflix and Prime and Disney+ turns out the NHS Wi-Fi blocks all streaming services which is just typical so I can watch normal TV for a few hours a day which I haven't watched normal TV for about 8 years now.
As I arrived I was left to unpack then I had my observations done BP, Temp, Weight, Height, MRSA and Covid Swabs, after which the nurse flushed my line and took some blood for me. Asked the usual questions about opening the bowels and peeing, eating and drinking. All ready for the big day tomorrow, the first chemotherapy session.
Oh, My Days I have not slept at all! It was freezing last night and I had a banging headache. I'm constantly thirsty so I drink a lot. I have a fluid chart so I am peeing in a jug to find out how many mls of urine I pass. Usual day, Up at 6 am for obs and blood. Observations and weight, lots of new medication. The chemo hasn't affected me yet. I seem to be cold and snotty a lot but apart from that it's not too bad. I'm still having broken sleep at 11 pm lights out then wake at 2 am, 4 am, half at 5 am and then up at 6 for blood and observation. The days are going slow already finding it hard to keep myself going. I have my laptop and PlayStation and a sketchbook. My sister and mum came through to bring me stuff I didn't realize I needed, a blanket, some snacks, milk tea bags and a kettle since the last tea is usually between 6 and 7 pm. It's always nice to have another before bed. The second chemo feels a bit rough, with some nausea and pain in my head again sort of like having a slight cold. Those types of symptoms but managed through it. Spoke to my partner, mum and sister which was nice although I miss my son. I gave him my old phone to keep in contact with but it turns out my ex-wife won't allow him to use it so now he can't even keep in contact with each other. I can't believe that I'm going through all of this and she won't allow me to contact my son. It's not even the fact that I have done something to hurt her as she left me for someone else. I just can't understand why she wants to cause me so much pain emotionally it's messing my head up. Just keep lying to myself and saying one day at a time, everything will be okay. Today is another wonderful day at the hospital. I started the day off well, had a shower walked around the room, listened to some music and did some drawing and then spoke to my son then things went a bit downhill and I had an emotional blip shall we say. Soon picked myself back up though and played on cod with the lads and then went for an x-ray and that was it another day done. I don't want to do this anymore! I know I don't have a choice but this is getting hard. The chemo is more intense and I can feel my body shutting down. I haven't eaten, and I haven't drunk as much as I have the other days. I haven't managed to get out of bed only for a little walk around and then I fall back asleep I feel constant nausea I hurt my skin burns my gums bleed and my head splits and all I want to do is go home I am really struggling now and it's still such a long way to go I don't know what I was thinking when I agreed to this idea at all. It's taken me a while to realize what an achievement I have done so far. I feel awful and I keep thinking you have only been here a couple of days, stop being pathetic and get on with it. When I've had 6 days of heavy chemotherapy which is incredible for anyone. It's hard to explain the sort of side effects you get but for me it feels like withdrawal, so years ago when the pain got incredible I started on tramadol which is an incredible drug however like all amazing drugs you need more and more to get that same effect so I got given the choice of rehab sessions or cold turkey I chose the latter hence the overwhelming feeling of withdrawal. For those who aren't ex druggys, you have terrible chills a feeling that no matter the number of layers or sweat that's pouring off you can't get warm, nausea where you have been so sick and your body still wants you to be but there's nothing left to come out, which applies to both ends by the way. Headache, a snotty nose, exhaustion, cottonmouth. This is like 24-hour torture so you have an hour session then a 3-hour session then a 5-hour session but it's not just whilst you're having the chemo that you feel awful it's also the time in between the time that you know will soon come around when the nurses bring the chemo trolly into your room and hook you up to another bag. Also, the medication has increased to something like 15 tablets and an injection in your tummy every night which is fun but a bit of advice if you can learn to do it yourself it hurts a lot less. Day 7,8,9 the final stretch things are about to get rough with 12-hour sessions of chemo so if they are worse than these past 6 days then I better get my big boy ball bag on! I honestly wasn't prepared for this and I know I'm writing to try and help prepare you for your journey. This will give you some insight of course but it won't truly describe the challenges you have ahead of you so just do the best you can as that's all we can do. Same as the others unfortunately not a lot going on just a lot of feeling rubbish from the chemo. Exhausted and fed up with not being able to leave this room or feel some breeze from outside when you can see the sun shining. Tomorrow is the big day The new cells await and hopefully, a better life will come with them otherwise all of this will be for nothing and trust me when I say it is hard and it will test you both mentally and physically you will have times of fear and doubt but just have a family by the phone ready when you need a chat about it all and the nurses are around to talk as well.
Bone Marrow Transplant Also Known As Day Zero
So after yesterday having pre-transplant medication through the line today is the day! It's not very dramatic so I'll try and build it up a bit. The two nurses come in and do your obs and check your details the usual then one brings in a big metal incubator with water in the bottom that is increased to body temperature. Then along comes this trolley with a bin on it and inside the bin are the cells. All Frozen since they have come from Germany. As the lid is taken off it hisses a mist over the bin itself and then one back at a time is hung up and put through your Hickman line. Now obviously it all depends on what each individual needs but for me, it was just 3 bags of cells that sort of looked like frozen salmon and smelled like boiled sweetcorn. However, if you have had a Hickman line before. Then you will know that sometimes you can taste what they put in your line and unfortunately, this was the case when having the cells a great piece of advice is to take some goodies to suck on as it takes about an hour with that taste in your mouth. Then that was it all done, new cells are in so it's just a waiting game to see if they take and hopefully home in a couple of weeks.
I don't feel any different yet by the way, still waiting to see how things move on which takes up to 100 days anyway so, for now, we are just waiting for my blood to come back to a safe level for me to go home in. Still have a headache and ache like I've been on a night out and woke up all cold and half drunk, but hopefully, it will pass. I hate this machine that your line is attached to I hate the alarm is constantly going off but in general, it takes a nurse between 25 to 60 minutes to arrive when you press your buzzer, I know this isn't their fault understaffed but please this machine all it does is beep at me and then moves on to another alarm to tell me that alarm has gone off. I want to go home now. I'm so tired I can't remember the last time I slept or had something good to eat. I miss my son and I want to hold him and smell his hair, I want to touch my partner's skin and kiss her lips, I want to hug my mum and sister. I need someone to hug me back. I can't do this anymore. I need to be home. I need to get out. I just can't deal with these same walls and lights and the constant pain and exhaustion. Please let me go. There's not a lot going on now. I've had a few symptoms of pain, headache and diarrhoea but nothing more than that oh and of course the constant exhaustion. I'm attached to this pump machine 24/7 since the transplant and I hate it I can constantly hear the alarm in my head beeping and the stupid machine will not just shut up. It would be okay but it takes half an hour or more for a nurse to come and turn it off so having an alarm going off next to you for up to an hour sometimes really gets to you mentally especially when you're exhausted and just need to sleep. Since the stem cell transplant, my blood has gone down slowly however the neutrophils have gone up and they need these to hit 0 so my body can start a new cycle of blood but at the moment there going in the opposite direction good news is on Monday (Day 17) I will speak to the dr and find out what the next phase of treatment. Great news it turns out we are allowed a visitor. I haven't seen any of my loved ones for 16 days! But the laws have changed and my mum will be coming to visit me later today! Then my partner on Wednesday and then hopefully my sister at some point, unfortunately, it's no children but to be honest I wouldn't want Isaac here anyway. It's going to make such a difference having them in the same room as me.
Unfortunately, my hair has begun to fall out and I can no longer swallow food or water at all. I have had a feeding tube inserted as I'm losing weight dramatically and can't take my medication. It's an awful sensation called Mucositis. My throat has become swollen and blocked by mucus. The feeding tube has helped dramatically and I am now taking food and fluid and my medication all at the same time. Eventually, the tube did get taken out after a few days and I managed to get back to eating and drinking normally. My neutrophils have reached a point where they are happy for me to leave the hospital finally I am so happy I couldn't take any longer on the ward as lovely as everyone is I'm just so glad to be heading home so after 40 long, long days in the hospital they are letting me leave I have a gigantic list of medication and will need daily injections for now until my neutrophils reach above 1 but who cares. I'm coming home.
So Called Normality
There's a line of a song which can describe how I feel and it goes "I got bloodshot eyes, and there's blood in my teeth I got a ripped up jacket and a friend who's a thief Well I'm a frothing' at the mouth, tryna pull it out But the fire inside keeps burning, burning out” I'm writing this on day 72 as since leaving the hospital there have been constant appointments back and forth from Leeds but also my local cancer unit. I can't explain or describe to you the toll both mentally and physically this has been on me. When I left it was a good start. I was hopeful and just ecstatic to be home. I think the adrenaline of it all kept me alive. Unfortunately, it didn't continue this way. Then it started going downhill. Night terrors waking up extremely terrified to the point I would be shouting out but never remembering what they were about, not nightmares as they seem a soft perception of what it is I was having. From there it began skin blistering, tears and rips in my groin and armpit skin feeling like you're burning from the inside out. Pulsating headaches that would keep you awake, pain in your legs that would bring you to your knees. My platelets are so low it causes bleeds in my skin and eyes and mouth. Vomiting which was so hard it would blacken your eyes and the cherry on top of course PTSD all wrapped up. Now I'm at a balanced point I guess you could say unfortunately my relationship has broken down and I am no longer with my partner I think it was the stress of it all outweighed the strength of the relationship. I'm only getting about 4 hours with my son before I fall asleep on him, but he is going through such a massive thing for a young lad to go through and yet he cares for me. "Can I get you a drink, Dad?" "Next time you cough, sit up and I will pat your back." "Let me get you a cold flannel so I can wipe the blood from your mouth." I mean this kid is just my hero!
Where are we so far?
I am still having weekly transfusions of both platelets and the odd red blood cells, so my mouth still bleeds and I have the platelet rash which is little bleeding under the skin. It just looks like little red dots. I no longer have so much pain or headache. My skin has turned black and peels off which is from the chemo. I am utterly and completely exhausted not just that oh I've had a busy day exhausted but the Am I half dead type. I required a bone marrow aspiration to see if it actually worked which they did on day 100 but they brought mine forward as something should have changed by now. Unfortunately when the results came through the Stem Cell Transplant failed there were no donor cells in my bone marrow. This means I have 2 options: spend the next 6 months having transfusions until my heart goes into organ failure or have a 2nd bone marrow transplant but this time with higher and more intense chemotherapy and a more unforgiving regime before the transplant itself. I hope this helps you all and gives you some insight as to what goes on and what we as patients have to go through.
Option 2 A Second Transplant
I'm sure we have all had one of those days, the one that starts with a spill that will be hard to get out or the breaking of a mug, then it turns into the next stage you lose your wallet or your keys, then you think no I'm not going to let this day get me down. And then the bad news comes. Well, this was one of those days. Just 4 months after the first transplant I received a phone call telling me that I had graft failure and the transplant had failed.
The second Transplant would now begin and I would have to dance with the devil once more, imagine having to go to a place of hell with this awful suffering but you come out on top you have beaten it. No more chemo or vomiting or being ill now is the time to get back the life that was taken from you from this illness, but it failed and they're asking you to go back into hell all over again, but this time more intense chemotherapy and with a bit of radiotherapy in there just to be safe. I honestly wasn't ready and certainly in no rush to start again but with little choice I knew I had to. The second transplant was a lot like the first in many ways, there was more of a physical demand from my body obviously with the treatment being more intense it knocked me, I mean I remember nights when I didn't feel human. Half naked, Half dead with my head over the toilet projectile vomiting while holding my feeding tube in to stop it from trying to come out of my nose it was like my soul had left my body and I was just a shell left to get through the worst of it. Maybe it was a way of coping or dealing with the trauma. There are only 2 parts to this transplant that stick out to me. The first was the day the chemo and radiotherapy finally finished I sore death in his physical form, I know this sounds hard to believe and I will leave it up to you. Personally, I don't believe in spirits or have much faith but I have to believe in what I saw. I was lying in bed soggy from the chemo. Now imagine a black sheet being pulled from the ground up onto the wall and through to the ceiling and there it stayed before hanging just above my head, this shadow had no features just pure darkness, drawing closer to my face. It stayed there for a few seconds and then disappeared. Now I wasn't scared neither was it scary I mean the light was on dimly so it wasn't a horror film setting. To be honest with you there was no emotion I felt nothing, hollow and empty. The second is After the transplant to help your neutrophil levels go up, you need GCSF injections but unfortunately, the one thing you need also comes with server pain. Now I'm not talking about your average pain I'm talking to the point that after 3 days of it if someone comes over and offers to remove your legs to stop the pain you would seriously consider saying yes. The correct dosage of morphine is 5 ml every 4 hours. This, however, did nothing so another 15 ml later and 62 hours without sleep I found myself staring into the mirror in the bathroom. I began to laugh that the laughter that you can't control the laughter that starts because of all other emotions you feel will bring sadness or pain. I began to feel myself questioning reality and if the past 3 weeks is a world that I had created to deal with the trauma of what I was going through. I literally couldn't tell you that night what was real and what wasn't. Apart from these couple of stand-out experiences it was much like the first except mentally it was slightly better as I was allowed visitors so thankfully this split my days up and gave me something to focus on and look forward to. There was also a nurse who I became close and had a strangely intense relationship with, she helped me get through it. She was incredible and supported me and made me smile and I enjoyed being there with her, so that made it easier for me in some ways.
Home At Last
I have finally come home again and this time without needing transfusions, the tests and results seem to be going positive and in the right and good direction. Physically and mentally each day is still a struggle, I find myself caught between a good life and a bad one. Some days I feel okay and think I could have gone to work today and then others I can hardly carry my weight. I'm hoping that this is just the adjusting period and that in another couple of months, I'll be able to start my life again. I know I'm a long way of been happy and proud of myself but I haven't fully given up hope not just yet anyway. I still have to attend the clinic and give myself some injections to increase my blood count. At least I'm not going to the hospital 3 times a week and needing blood transfusions.
I hope this gives you some insight into going forward with your transplant, I'm not going to lie or tell you it's going to be okay, all I can say is just keep going one day at a time and keep the fight to survive that's all I did grant it failed the first time but this time around so far so good. Eventually, one way or another the transplant journey will come to an end. This is in no way a full account of what it is actually like going through it as I couldn't begin to describe the true feelings and emotions of what you go through and I have left a lot out as I didn't intend on writing a book but I have done my best. Its also been written in a few parts over the last year because of the amount of ups and downs and changes in my life.
All the best and if you want to chat you can give me a message through the account and ill be more than happy to answer questions or give you what information I can.
Adam.
