My medication was changing, I had to come off Warfarin (my anti-coagulant drug) as it didn't interact well with Sunitinib (my cancer drug). I now had to inject myself every night with Tinziparin instead. This was mostly administered by my wife as I rather theatrically couldn't bring myself to do it. Each night I had a choice between the arm or the belly, nice!. I had an indigestion tablet to counteract the effects of the cancer drug, anti sickness tablets plus my Morphine Sulphate which made my pupils tiny. I also had some liquid morphine for breakthrough pain as and when I needed it.
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| Something I could do with the lads |
Virtually all the drugs made me constipated. The doctor had armed me with Movicol sachets to combat constipation. Movicol works by retaining the water it is taken with in the bowel rather than it being absorbed. This increases the water content and volume of the stools in the bowel, making them softer and easier to pass.
I took one a day but in hindsight I should have taken more. It could be 7-10 days between trips to the toilet in the weeks after coming out of hospital. I would await for the eventual call of nature with dread and when duty did call I would walk to the lavatory like the condemned walking to the gallows.
The first time this happened I was in genuine fear for my life, I won't go into graphic detail but it might help someone in a similar position if I share my experience. Please bear in mind I had been eating solidly for 10 days without going, the food needs to go somewhere, so when you are constipated the stools are compacting inside you making them very hard in consistency.
I'd had an initial movement which was very painful, but then the something that should be moving, and had been, was not, and hadn't for 10, 20, 30 minutes. I waited, unable to force it because of my stomach wound from the kidney operation. Things were feeling really sore and I suddenly got a sheen of sweat all over my body, I was very hot, I spent another 5 minutes taking all my clothes off as I was boiling. Still nothing. I tried googling the problem on my IPhone and found it hard to think of the specific search criteria to help me with my problem, stalemate. I was getting pins and needles sitting down for so long, I could stand up like a cossack dancer to relieve my legs as I was worried about blood clots! Nothing fell away when I stood up, it was that hard and stuck fast, I shouted for my wife to come help, I had no idea how I thought she could help, I demanded her appearance, then basically rubbished everything she suggested, "don't dump your sh*t on me !" she said, if only I could, I thought.
I was getting more and more irrational and panicky. We started to run the bath, again we were not sure why, I think I was going to sit in it and possibly try snapping it off.
I sat back on the loo and eventually and I mean eventually things started to move, impossibly painful at first until the compacted stuff had passed through then it gradually became easier when the softer stuff arrived. The epic was over. The relief, palpable. Seriously, it had completely debilitated me, I felt weak from the movement, Going to the toilet lowers your blood pressure, I could hardly walk from pins and needles and I was really cold by the finish. I had a shiver attack when I got to bed. Staring into space.
I vowed to drink more Movicol sachets during the day, the recommendation is 1 to 3 sachets a day, please speak to your doctor if you are having problems with constipation as more can be taken in certain situations but there are health risks for some. There are alternative treatments. Here is a useful link
http://www.movicol.com.au
As the weeks passed, my cancer tablet started to make its mark on my body, my beard hair and what is left of the hair on my head started turning white. I definitely felt stiffer, the further I went into the 4 week cycle. I was particularly pained in my hip area, excruciating pain at times, once the 2 week tablet holiday arrived, my hip pain would be relieved after a couple of days, my first holiday was much welcomed, subsequent holidays were less noticeable with regards relief.
Another symptom was leg itching, mainly at night, I don't mind an itch but it was relentless at times, I was careful not to break the skin. I was encouraged to use emollient cream which kept the skin hydrated and supple and didn't contain perfume.
I also was advised to use children's toothpaste and non alcoholic mouthwash to combat sore mouth, ulcers, bleeding gums.
Leeds Oncology dept provided me with a long list of potential side effects and products to use to combat them, The list and the support was invaluable.
Although the drug was causing me some discomfort, they were keeping me alive. We agreed with Leeds that I would have 3 cycles and then be scanned to see what the situation was. Unless new symptoms manifested themselves and I could be scanned sooner. My first scan was booked for the "holiday" at the end of March. I had also been complaining about my hip and back pain since I had come out of hospital and so they decided to give me a bone scan in early February.
I also had an appointment with a Heart specialist at Leeds LGI. This was a follow up to the suspected Cardiac Arrest and Pulmonary Embolism I had back in November. I was given a heart ultrasound by a junior doctor, I was laid on a bed on my side as the doctor performed the procedure. Towards the end he left the room and then in walked a senior doctor who re-checked a few angles previously checked, they were debating whether I had partial heart failure in my right atrium. I didn't expect this!
In my follow up meeting, I had a VO2 Max test. I had to pedal on a cycling machine while they captured my inhaled and exhaled Oxygen and Carbon Dioxide levels.,
I did look and feel ridiculous wearing the instruments they gave me. I had a large tube connected from my mouth to a machine and a larger than life pair of what I can only describe as "nasal squeezers" to ensure I breathed through my mouth. The meanies then increased the resistance until I couldn't carry on. I felt like a dancing bear on that machine, however I knew there was a serious need for this, on the bike I wondered if they knew if I had cancer? I couldn't remember mentioning it when I arrived. I wish I had as they didn't half push me.
A few days later I was in front of my heart specialist, it was explained to me that I did have a heart weakness, surprisingly on the other side of the heart from where the embolism had occurred. They suspected it might be caused by the cancer treatment I had received. I needed to go onto heart medication immediately, it wasn't deadly serious but was another big worry I didn't need right then.
Appointments and key dates were arriving thick and fast. Next it was my Bone scan appointment. We were called in at 11am where I was given a contrast dye injection to help enhance the detail. My actual scan was at 2pm so to take our minds of it, we decided to keep things positive by going to the Flying Pizza in Headingley. We arrived at 11:50 and it wasn't actually open yet, they did let us in, however it was a Monday lunch and we had the restaurant to ourselves for a good 30 minutes. Too many attentive staff to 1 table wasn't the quiet invisible lunch we had envisioned. We weren't good at chit chat with the waiter on that day.
We went back for the scan, they ask you to lay down under a very heavy looking scanner that passes 3 inches above your body from head to toe. It takes about 45 minutes to run over you.
I was bothered about a couple of monitors that were turned on and in my eyesight from the scanner. They showed a human outline and I was convinced that this view would be kept on during the scan and I may see sinister, unexplained spots appear as the scan progressed. The scan technicians are not allowed to discuss the findings with me, I had a follow up with Oncology planned for Thursday to discuss the results. I asked the technician to turn the monitors off if they weren't being used which she did.
It was back to the Bexley Wing at St James Hospital on Thursday for my results. Once again another appointment that can have such a devastating affect on my family and me . You never get used to them. I remember in the waiting room picking up a Cancer department magazine, I started reading a story from a woman who had lost her husband to cancer, he was 38 and had a terrible time of it, he had lost a leg and finally passed away days after suffering a collapsed lung in the shower. I put it down quickly as it had shaken me up. I was reminded of a guy in York hospital who had died in the bed next to me in September. I didn't know what was wrong with him, however he had amongst other things a collapsed lung.
My name was called, the doctor was giving nothing away as I followed him to his office. We got sat down and he quickly told us the scan was clear. The hip pain was put down to radiated pain from my spine, but whatever it was, it wasn't more cancer spread. Fantastic news, the existing spinal cancer was about the same size as before, which again was good news or at least it wasn't bad news. Maybe that bit was just news. A small victory, but we knew we had the soft tissue scan later in the month. It was nice to receive positive messages from friends and family.
My cousin had suggested we look at taking the kids to Disney. This seemed to be the done thing in my situation. After all, I was in a when not if situation. It would give the boys a happy memory of a great family holiday together, They deserved it, the last 4-5months had been hard on the kids. They typically would be happy to see friends and family when they visited, but would then be asked to leave the room when we were updating guests as we didn't want them hearing things that would upset them. This would only give the kids half a story of what was going on, we were, in the early days probably guilty of not going into too much detail of what was going on. For Logan who was 7, it was great as he was seeing more of his family and friends. For Fred who was 11, he was a lot more sensitive to the situation. He didn't know what was good news or what was bad. We later learnt to explain to the boys where we were going and specifically why. Fred naturally thought a trip to the hospital was bad news, in reality that was not always the case.
We continued to discuss a holiday destination. We didn't think a long flight was a good idea. Disney can also be very tiring as you can be on your feet all day. Also in my up and down moods I was likely to punch Mickey Mouse in the face. Instead we went for 5* all inclusive in Lanzarote, It would be relatively hot in February and the flight time was a lot less than America. We just wanted the best holiday we could afford so that the kids could have a fantastic time and for Emma and I to be able to relax with good food and accommodation.
We were concerned with the amount of drugs I was taking with me, some of them opiates. Thomas Cook advised us to bring a letter from our GP listing the drugs required and why we needed them. There wasn't a problem in the end.
We did set out to have a "normal" holiday however the problems we were experiencing at home didn't go away just because the sun was shining.
Emma would take the kids for a walk along the beach before breakfast so I could rest longer, when I did get up I had to endure watching other Dad's throwing their kids around the pool, something the kids and I used to love doing. The heat was a problem for me as my Cancer drugs made me photo sensitive, so I did become a grump around the pool, I would go for an afternoon nap to my room, I was pretty much there, but not there for my family.
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| Slow living on holiday |
The food was good in the hotel but I wasn't drinking, Emma doesn't like drinking on her own so we were the only tea-totallers in the all inclusive resort. We'd order our drinks and the barman would say "...and for the grown ups?" eye brows raised.
The kids were flying around the hotel with their new mates, we were doing the English thing of not leaving the hotel in case we missed the free drink and grub. on an evening there was some German dominated entertainment laid on and then a disco. Emma loves to dance, I, self consciously and in hindsight, rather selfishly refused to dance. The evening tended to peter out as I grew tired and miserable and wanted to go to bed first. I had my injection to look forward to but that was no excuse.
This whole situation had made me more selfish and needy, maybe my drugs helped amplify this, Emma had to put up with a great deal of bad moods, unhelpful episodes and refusals to do something with the kids, not only on the holiday but throughout. I got into thinking the worst case scenario would happen on most suggestions, I didn't want to have an episode in front of the kids, to show weakness, it was my only excuse. I didn't realise I was doing just that by refusing in the first place.
March came and went and it was suddenly scan time again. This was a CAT scan procedure, I thought it would be an entire body scan but they only wanted the chest and abdomen. The scan was clear. The Sunitinib was working!, I still had a spinal tumour, but that wasn't giving me new problems. I was still under a lot of pain control, the Sunitinib was causing me some side effects, but it was keeping new tumours at bay. For the first time in months I was happy. I could live like this. I saw a future.
Things were starting to get better and easier for me and the family, I joined a fitness club as my physiotherapist had finally given me the all clear to start swimming. It was something Emma and I could do together and we were going most days while the kids were at school. I had started to drive a car as well and we were planning on another trip away for early May. Our local rugby club had managed to win their way through to a national final at Twickenham, the home of English rugby, we arranged to join hundreds of other Selby supporters travelling down to Twickenham in London. The plan was to drive down, meet up with friends and watch the game. We were then going to drive to a hotel near to Ascot so we could take the kids to Legoland on the Sunday.
We didn't know it at the time but this weekend was going to be the trigger for more bad news / pain and hospital treatment....
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