I had always feared chemo. I don’t know why, but the thought of having a version of drain cleaner shot through my veins left me with a sense of dread. I was put on a GemCarbo regime. The first infusion consisted of one lot of Carboplatin followed by Gemcitabine. Seven days later I would be give just an infusion of Gemcitabine, followed by a two week ‘break’ before the cycle started again.
The first infusion took around three hours in total, including bloods at the beginning. All I felt throughout the whole process was the cold seeping of drugs into my veins. Luckily a heat pad was at hand to alleviate the discomfort somewhat. Funnily enough the worst discomfort I felt was the cannula put into the back of my hand. Bloody painful at the best of times, and that’s even before the chemo started irritating my veins.
I was fairly upbeat that day and wondered how many days it would take before I would feel any sort of reaction to the drugs. It didn’t take long. An hour after it had finished I was lying on the settee at home with flu like symptoms. At that point I started descending into my roller coaster ride to hell that I never recovered from during the whole process. Practically my whole world felt drug induced. We'd booked into a hotel in Cardiff the following night for two days, as I thought the chemo wasn’t starting 'til later. We didn’t cancel under the assurance that I should feel “ok.” I felt like I was slipping in and out of consciousness most of the time. I wandered around the Welsh capital with everything looking like a scene from ‘Dark City’.
After a week of feeling like crap I was ready the following Thursday for my second infusion of Gemcitabine. I never made it. Having showered in the morning I noticed the veins in my left arm and chest were horribly swollen, and after a quick call to the Oncology team was told to head over to A & E pronto as I had a suspected blood clot. Now the good people in the Oncology hospital stated that a Doppler Scan should pick up any sign of a clot. Well, after arriving in A&E the first Doctor who saw me was most insistent that it couldn’t possibly be a clot as I would have problems breathing. Sorry mate, second opinion needed here so another came along and agreed that it would need further investigation. A chest X-ray was called for, bloods were taken and showed nothing. By this time the swollen veins had died down abut I was still feeling unwell. A CT Scan showed nothing either, no luck thus far.
Six hours later and virtually at the end of my tether I was told there was time for a Doppler scan. Within ten seconds the scan had picked up my clot. I'd already received a blood thinning injection and was told to report back to the hospital the following day. On arriving at the ward on Friday I was politely asked how I'd feel about injecting myself with Clexane in the tummy everyday. “Great”, I thought, “I would just love to do that on top of everything else.”. Now, don’t get me wrong, the thought of jabbing myself in the stomach with a needle fills me with horror, but, strangely enough you do get used to anything, given time. Besides I had no choice, either I do it myself or I go the GP surgery everyday. Nope, I was doing this myself, and did it everyday for six months. This was on top of chemo, radio and everything else I was going through at the time.
My second infusion was obviously late and threw the whole cycle out, which I was told was quite normal for chemo patients. When my second cycle started it had to be postponed due to my white cell count being too low. Another week’s waiting and and I was getting sick of it all. One reason for this was that I never seemed to fully recover between cycles so permanently felt like crap.
Got through the second OK-ish and then the third one started. Boy, was I ill this time. We had friends over for a meal on the Saturday, two days after my infusion. I'd been in bed most of the day, feeling listless. I eventually got up around five-ish and went down to greet them. We had a meal, few glasses of wine and then settled down for a few hours. I didn’t feel particularly unwell just very very tired. Friends left at around 10pm and I lay down for a rest. My wife had insisted on ringing the Velindre Cancer Centre and explaining that I wasn't feeling very well but I was having none of it. In typical man fashion I said I was fine and to stop fussing. Half an hour later I was drifting in and out of sleep and the hospital was called. The told me to come in immediately. My blood pressure was way down and I was severely dehydrated. I was put on a drip and stayed on it, with various combinations of solutions, for three days. I could have died. Dragging a drip down a cold corridor in the middle of a frosty night on a Sunday morning to relieve myself was the low point of everything I had gone through. My body had taken a beating and I was ready to pack it in.
Back home on the Monday and having been told to drink copious amounts of water I had made a decision to stop chemo. It wasn’t for me and I had zero quality of life. At the next clinic I told them how I felt, but, incredibly enough the chemo so far had worked and had shrunk the tumors significantly. I was having no more chemo and could start my radiotherapy as soon as the planning was done.
Some people sail through Chemo without too many problems. I, unfortunately wasn’t one of those. Would I have it again? I really don’t know. I certainly wouldn’t want to feel like that again. If my only choice was to have it through a Cannula it would have to be a no. I found the experience too painful and distressing. Still, it’s a decision I may well have to face again at some point so will have to wait and see.
Chemo was always something Hywel dreaded, maybe because he'd spoken to and seen people who'd had it. The effects were pretty obvious and much more immediate than with radiotherapy. We were told every patient reacts differently to chemo so Hywel might not feel too bad. He'd get to know which were his good and bad days and we should work around that. We'd be able to ask for the chemo to be fitted around our usual activities so there wouldn’t be too much impact on our social lives. Hywel was to have four cycles of chemo, each cycle was three weeks long with the chemo being administered on day one and day eight of the twenty one. We had booked a two night stay in Cardiff before the chemo started, but because they wanted to start the treatment ASAP the first infusion was to happen the day before our booking. I was all ready to cancel the trip, but the oncology nurse advised us it should be fine and would be a nice break for us, Hywel was unlikely to feel ill so early on in his treatment.
I went with Hywel for his first dose of chemo, he had to have quite a large needle put in his hand which was a bit painful, I could tell as he was squeezing mine very tightly! He told me he could feel the drugs seeping into his veins as it was making his arm really cold, so cold it was getting uncomfortable. He was given a heat pad to help with this which was an improvement. There were three other people sitting in similar chairs with drips in their arms, some on their own and some with a family member. I noticed they were all a fair bit older than Hywel. We chatted quietly to each other and I popped out to get us a hot drink. The treatment took around three hours. We got home and Hywel started to feel the effects immediately. He lay on the sofa shivering and we both missed choir that night as he felt pretty rough and I didn’t want to leave him.
We went into Cardiff the next day, but it was a mistake. Hywel was feeling so dazed and unsteady during a wander around the shops that we went back to the hotel for him to sleep. Luckily I'd taken a novel and magazine with me as we spent a lot of time in the hotel room whilst Hywel slept! We did manage to go for a meal each night, but were both glad to get home as Hywel just wanted to be in his own bed. He spent a lot of time sleeping during his chemo.
The eighth day of cycle one arrived and Hywel woke up with an aching arm. He had a shower and when he came out he looked really strange. The veins on the left side of his chest were protruding and his skin looked red, accompanied by a swollen arm. I rang the chemotherapy helpline at Velindre and explained Hywel’s symptoms. They recommended we go to our local A&E as it sounded like a blood clot and they would be able to do a doppler scan to find out. We were seen pretty quickly by an A&E doctor, he wasn’t convinced Hywel had a clot even though we told him Hywel had cancer, had just started chemo and had been advised by Velindre to go to A&E. He felt that Hywel should be having breathing problems for this to be the case. We weren’t happy with this and wanted a second opinion so another Doctor spoke to us and agreed that further investigation was needed. Bloods were taken and Hywel was sent for a chest X-ray then a CT scan. We were then taken into a side room with a senior nurse who asked Hywel lots of questions, measured Hywel’s arm and gave him a blood thinning injection because now they agreed there could be a clot. The X-ray came back clear and the CT scan showed an abnormality around one of the veins but no obvious cause for the swelling. We had been in the A&E department most of the day at this point. Finally another A&E Doctor said they ought to do a doppler scan as a quick final check because Velindre wouldn’t be very happy if that wasn’t ticked off. The scan picked the clot up immediately, leaving me asking myself, “Why couldn’t this have been done in the first place ?” We were then sent home and told to come back the next day. Hywel was shown how to inject himself with Clexane, which he'd need to do for four to six months. I was asked if I wanted to do it, I wasn’t keen to stick a needle in Hywel and inflict pain on him again, and we agreed that if Hywel did it himself, he would be a bit more in control of his treatment.
Hywel’s second round of chemo was a week late because his blood count was too low, so the treatment cycle now coincided with Elliott starting his first year in High School and Hywel’s Australian cousin Roger coming to stay. Elliott was really excited about starting school and looked so grown up in his uniform. We both dropped him off in the morning and waited at the window come 3:30pm to see him walking down the street at the end of his first day (though we pretended we were just sat in the lounge watching telly when he let himself in!). Roger used our house as a base for a week, which was lovely for us, it took our minds off Hywel’s treatment and the week flew by. Then before the third cycle started I drove Adam up to Warwick University with a mountain of stuff to start his Chemistry degree. It was hard doing that on my own, but Hywel needed to rest and Adam was able to do all the lifting and carrying of his belongings. I felt sad after waving him off, but at the same time I was proud and relieved that he had done so well in his studies despite what we'd been going through at home.
The third cycle started and Hywel was really feeling unwell, this time with stomach problems, he was constantly in the bathroom. Friends came over for a meal with us and I could see that Hywel was unwell. I told him I was going to ring the hospital as I was really concerned, which he thought was over the top, insisting he just had an upset stomach. When he went to the bathroom for the twentieth time I told his friends I was really worried and that they should go home - I was going to get in touch with Velindre. I rang them and explained, they spoke to Hywel and told him to come to the hospital straight away. He was very ill, severely dehydrated with very low blood pressure - he could have died without treatment. “You should listen to your wife, sometimes she will know you better than you know yourself”, was one of the things a nurse told him - he does a bit more now as that incident was very scary! Hywel spent three days in the hospital and decided he did not want any more chemotherapy. After he came home he needed to rest. His next clinic appointment was to discuss progress. Hywel told the consultant his decision, but at the same appointment the consultant said the chemo had actually done a great job - the scan showed the tumours had shrunk significantly (which meant a greater than 50% reduction) and she now wanted to treat Hywel with radical radiotherapy as there was a small chance that the tumours could be destroyed.
We were both delighted with the news and because there was no further chemo planned we were able to go on a trip to Liverpool with our choir where we opened the National Cancer Research Institutes’ 2010 conference. Attending this was something we were aiming for at the end of the chemotherapy. I was singing a small solo part at the beginning of our opening song “You’ll Never Walk Alone” and Hywel had pushed himself to be there to support me doing that. It was a very scary but proud moment for me. The words I was singing were very apt for our situation and I was so glad that I could sing them with Hywel stood in the choir close behind me. It was an amazing experience for the whole choir as the event was exactly the right place for us to be singing and it was the biggest auditorium we had performed in. We had rapturous applause and a standing ovation at the end of our performance, lots of the people attending the conference sought us out at the exhibition afterwards to tell us how moved they had been and what a great idea the choir was for helping to support people living with cancer.
After Liverpool it was back to earth with a bump as the planning for the radiotherapy needed to be done.