Another, wet dreary miserable Sunday afternoon. I shouldn’t complain, considering the terrible weather and flooding in the south west. It’s a scenario I do not find difficult to imagine, many times I’ve stood at the top of Glastonbury Tor, gazing across the vastness of the Somerset Levels. Centuries ago the entire area was flooded, until the land was reclaimed for agricultural use. Fortunately the area surrounding Worthy Farm where Glastonbury Festival is held remains dry. Pilton, some 7 miles away from the town of Glastonbury is on the eastern edge of of the levels and is saved from the destruction of the current floods. Those of you who have been following my blog for some time will recall the many discussions I’ve had with my oncologist on the subject of the festival. After many months of discussion I finally convinced him that he would love the festival, and we both went through the trauma and disappointment of failing to secure tickets for this years festival. I’ve been keeping it quiet, but, aware at my own disappointment at missing the festival for the first time in 15 years, he wrote a letter to to the festival organisers outlining my medical history and pleading my case that I should be given special consideration and be granted tickets for 2014. I won’t go into detail, but apparently, I’ve been having a pretty rough time over the last couple of years, and if anyone deserved to be going to this years festival, then it should be his patient…me. The letter was sent off and I pretty much put it to the back of my mind, until I received a telephone call a couple of weeks ago from the disabled access team for the festival. The letter had gone to Michael Eavis, who had passed it on to them asking them to arrange for me to be able to purchase disabled access tickets. I need not remind you that the festival had been ‘sold out’, the entire allocation of 130 000 or so tickets having been sold within half an hour of them going on sale last October. The company responsible for the sale of tickets phoned me last week and am pleased to be able to report that ‘I shall be going to the ball’ ! I don’t have to tell you just how delighted I am. I had almost given up hope of going this year. But it does restore my faith in mankind, particularly my oncologist, and of course, Michael Eavis and the team at Glastonbury Festival. You will remember the recent passing of my friend Hazel, a regular attendee at the festival, and how I vowed to get there this year in her memory. I can’t help but think she somehow had a hand in this, and so Hazel I will be there, and thinking of you every minute of the day, celebrating as you would have done.
I saw Dr. S, my oncologist a week or so ago. Mainly to get the results of my recent CT scan, but also to thank him for his kindness and generosity for writing the letter to Michael Eavis that secured my festival tickets. He was delighted that I’ll be going to Glastonbury. It just backs up what I’ve always said about him, he’s a very very nice man. He’s a bloody good oncologist too, one of the best, and I’ve always trusted him impeccably. And so I was not too concerned when he told me he wanted me to have another scan, this time an MRI of my liver. This is not unusual, I’ve had numerous, but normally when there is a suspected spread of cancerous cells. He assured me he didn’t think this was the case, but the CT scan was, in his own words ‘inconclusive‘. Maybe the CT scan was just a little too soon after surgery, meaning that the images of my liver were not clear. My MRI appointment is scheduled for 6.30 pm. Now I know that early morning/late evening and weekend appointments are reserved for urgent cases, and so this has cast a little bit of concern on my part. If nothing else it means the waiting for a conclusion goes on. Every cancer patient will tell you that the waiting is the worst part. We’ll just have to wait and see…again !
I had a hastily arranged appointment with Mr.S (colorectal surgeon) later the same morning as my oncology appointment. My hospital records were securely packaged up for me to take from one side of the hospital to the other, now considerably heavy. I was seeing Dr. S to discuss the problems I had been having with blockages in my colon. I hate seeing doctors when symptoms seem to have cleared up from the time the original appointment is made. It’s like turning up to see your GP after waiting a week for an appointment to say ‘ I had a sore throat!’. On this occasion I need not have worried , by the time I saw him my symptoms were worse than ever, the pain in my abdomen was so bad that I could barely let him touch me. There was no way I could hide this and he could see that. He had seen the CT scan, and arranged for an immediate x-ray. He is almost certain that my problems are the result of adhesions and a bowel that has still not recovered from being pushed aside during my recent liver surgery. The colon is an organ that does not react well to being interfered with and often shuts down in such circumstances. There is still time for improvement and my colon resuming it’s normal function. As far as adhesions are concerned, surgical intervention is no guarantee that the problem will be resolved, as further surgery at this stage might result in……further adhesions. Surgery would also involve further interference with my colon, which would yet again cause it to go into shut down mode. So for the time being it is going to be a case of sticking to a diet of particularly bland food and, wait and see. More bloody waiting.
He did however call for one of the consultants from the palliative care team to come and see me, in an effort to try and combat the considerable pain I was in. The doctor was down within 20 minutes to discuss my condition, examine me further and try to find a way to ease my pain. She was wonderfully considerate and understanding, and the first thing she did was to go back up to the ward and get me a large dose of Oramorph (morphine). She has also tweaked the levels of some of my many medications in an effort to reduce constipation. You wouldn’t think that something as simple as constipation could cause so many problems, but when you’ve already had a large chunk of bowel taken away it can become a serious problem. One major change was to my painkillers, taking me off oxycodone, replacing with the considerably stronger drug Fentanyl. This drug is delivered through skin patches over a period of 72 hours, so I will have a permanent patch on my body to be changed every three days. Further appointments were made for me to see the stoma nurses, and colorectal nurse specialist in the afternoon, and so it turned out to be a long day at the hospital. It was eight hours from the time I left home to me returning exhausted at the end of the day. However it was worth it even if I am still left waiting for results, yet again. Far better though than having to wait for a series of appointments had I been treated elsewhere. It’s a considerable advantage being treated at The Christie where I can see 3 consultants, 2 specialist nurses and an x-ray all in one day and arranged at such short notice.
I’m hoping tomorrow will bring an improvement in the weather so I can get out. Apart from hospital appointments and visits to the local co-op for essentials I’ve not been out since the new year. I did go out for lunch a couple of Sundays ago when my sister and bro in law visited, but that was a quick trip out as a passenger. I need to get out the house and try and resume some sort of normality. Lew and his girlfriend Kirsty are coming next weekend which means I need to do a proper supermarket shop, and I might venture into Manchester as I need shoes. I must have 20-30 items of footwear, trainers, boots, casuals, but no shoes at the moment. Footwear is the sort of thing I buy on impulse, hence the reason I’ve got so many so it will be interesting to see what I come back with from a planned purchase! Then I suppose I’d better start planning for Glastonbury.