I was diagnosed in September 2006. For a good year beforehand I was having shoulder pain, which the doctors told me was just a pulled muscle. This seemed perfectly believable at the time because I was a very active person, teaching kayaking and canoeing twice a week, running a scout troop and having a full time job.
After finishing a large project at work I decided that I needed to sort this pain out once and for all. One Wednesday morning I made an emergency appointment at my local doctors. It just so happened that I was able to see a new doctor that I hadn’t seen before and she suggested that I had a chest x-ray and some blood tests, which I had later that day. Just two days later I had a phone call at work early morning from the doctors asking me to come in to discuss the results. By this point I knew something wasn’t right but the only way to find out what was wrong was by making an appointment. So I went, with mum along for support.
Amazingly, there was no wait to see the doctor...you know there is something wrong now! I sat down on my own with the doctor and she started to talk. A lot of the conversation was a blur to me but I remember the doctor saying to me, "We think you have lymphoma", to which I replied, "Ok, can I have a prescription for that?" thinking that it was just a chest infection. The look on the poor doctor’s face was horror and she then held my hand and said, "Andi, its cancer". Well that was it. I broke down and couldn’t hold back the tears. After what seemed like days of talking, I went and got my mum and brought her into the doctor’s room and had to explain. Within a week I had been to see a cancer consultant at my local hospital and had started chemo. It was all going to be ok though because the doctors assured me, "If I was to get cancer this was the best cancer to get". I thought to myself, “thanks that really helps!”
I stared a course of chemo called ABVD which involved me having chemo once every fortnight for eight months. During the eight months I had no end of little troubles which included really bad sickness and long stays in hospital for infections. At the end of this treatment I had a PET scan to see where we stood with how well the chemo had worked. Of course hopes were high! Everyone was so sure, including me, that I would be cancer free and I could start to get back to a normal life. Well after playing the waiting game I found out, that although the chemo had worked in shrinking the tumour, it was still there. As you can guess it was more than a kick in the chest to find this out but we were still sure that there was more treatment out there that would, in the long run be successful. It was just apparent that my fight was going to be a little harder than first thought. Not all bad as I’m a great believer that if it’s worth it, then you need to work hard for it.
So after taking in the news and explaining to people what had happened, I discussed the next round of treatment with the doctors...and this was no small amount of treatment we were talking about! The line up would be two rounds of intensive chemo which consists of 7 days of chemo without a break...the chemo was none stop for 24 hours. After I had the first week of chemo I had to have my stem cells taken, with the view of me having a stem cell/bone marrow transplant after I finished the intensive chemo. Again, with having chemo it comes with loads of bad side affects with sickness, depression and a lot of time to think about things that didn’t really need to be thought about.
Because of the sickness I had I was having a huge amount of anti sickness drug. These drugs helped me get through the day but sometimes left me on another planet and I was under no control of what I said or did. In the mean time, I was having my bone marrow harvested and frozen ready for this big scary transplant. I had the second round of week-long chemo and was lined up for a huge amount of radiography. To be honest, the radiotherapy was a walk in the park compared to other treatments I’d had...so much so that I decided I would be the 'big man' and drive myself to every appointment every day. This was partly because driving was the only time I had where I was the only one in control and where no doctors, friends or parents could tell me what I needed to do. It was MY time! Sometimes I pushed myself a little too far driving to hospital day in day out but it was something I had to do for myself.
After having a special Christmas with family and friends and a small break from treatment, I went to a brand new hospital with new doctors, nurses and a different environment. I felt like I was really going into the unknown to start my first bone marrow transplant. To say that was the scarcest thing I’ve ever done is an understatement. I spent 5 weeks in a tiny little room in Leicester Royal Infirmary where I could touch both sides of the room if I stretched, and only really wanting to see close family. I have always been scared of friends seeing just how bad and sick I get. For those 5 weeks I never ate much, only ever eating in the evening when mum & dad came to visit and where I might push myself to have an ice lolly. Over the course of the 5 weeks I dropped to 5 stone in weight and had some worrying times when I got pneumonia and a bad heart infection. But as always, I kicked that all in to touch and just about got well enough and strong enough to convince the doctors to let me go home. The weeks that followed were really hard, trying to get back on my feet and remembering to take the pills I needed on time, and not having the security of the hospital and nurses is a hard hurdle to get over. But of course with the help of my family and close friends I started to build my strength and get back onto my feet. With about a six month wait and weekly visits to hospital to check blood levels, I had another PET scan to see, and to really confirm, that after playing the waiting game, all the hard work had paid off. Most of the time it took a good week to hear anything! So when 3 days later I had a phone call asking to see me and my family in hospital later that day, I sort of already knew from there it wasn’t going to be good news. As it turned out I was right and again the treatment had worked but not completely done its job. The knife twisting moment that was added this time was that they had found another tumour in my neck.
Never fear though as this was not the end! There were more tricks and more treatment and if that was the case, then by damn it...... line it up and lets have it! It wasn’t easy to come to that conclusion as being told again that you had failed is one heck of a bitter pill to swallow and to move on from, but after a few days of upset, anger and all the other emotions that follow, I set myself up for the next round of treatment. At this point we knew that the options of treatment were running thin on the ground and that the long run plan was to have another bone marrow transplant, but this time I would have to have a donor donate their cells with a hope they would be stronger and completely cancer free. The first place to look for a good match would be my two older brothers. In this case it would turn out that they weren’t to be a match for me. There was then some uncertain time of searching for a donor on the list of donors. At first this seemed to take a long time to move forward, when out of the blue, after what felt like a long time but was really only a few months, there happened to be two new donors’ sign up to the list with 100% match for me. One was a 20 yr old and the other a 30 yr old. That’s the only information I was allowed to have because of data protection etc. It was decided by the doctors and the people in the know, that we would go with the 20yr old donor as he would be the younger stronger donor.
I had the second transplant which wasn't as hard as the first one as I had a better understanding of what was to come. I spent just under 5 weeks on the bone marrow transplant unit and left there with high hopes. Within a week or so, I had to be readmitted to hospital for what I didn’t know then was to be one hell of an uphill battle with a virus which would keep me living in the hospital for 85% of 2009. But with help from close friends, family and an amazing team at the bone marrow unit, I would fight off the virus to a controllable level and slowly, but surely, spend more time at home. Then, once we had given the second bone marrow transplant time to work, I would start to undergo more scans and tests to see how well the transplant had gone. Sadly the scan had shown that although the cancer hadn’t grown since the last scan before the transplant, it also hadn’t shrunk. As you can guess, this was a hard blow again to be told that you had failed to fight off the cancer after all the hard work and energy I’d put in. But there was still hope. The doctors still had more tricks up their sleeves and I was sure not ready to give up. I would move on to a new treatment called ‘DLI’ which is basically more stem cells from my donor in a hope to give the cancer one last kick in the bum and get it gone for good. After two rounds of the DLI it showed that the treatment was not going to be the answer and I decided that enough was enough. The tricks had run out, the treatment ideas had come to an end and it was time to face that, with all the will in the world, all the backing from friends, family and hospital staff there would be no cure to beating my cancer. This just about takes us to today, when I formed the ABC trust.