November 4, 2013
You never know how strong you are until being strong is the only choice you have.
-- Cayla Mills
On the 10th July, John sent me a mail:
I had to sleep for a few hours; I was so tired. I'm going to have to have between 28 and 31 radiotherapy sessions and during the same period, chemotherapy in tablet form. The oncologist is hopeful of a complete remission because the cancer hasn't spread to the lymph glands. ... One thing is sure, it's not the same cancer as the last time and isn't a spreading of the bladder cancer. He thinks I should be done with the treatment at the end of September. ... This coming Friday at 10:00, an explanation meeting; 10:30 blood tests; 11:00 they'll draw the tattoos of where they're going to radiate me; 12:00 a CT-scan. Monday, 09:00 an infusion of chemotherapy; 11:00 radiotherapy. The party's about to really begin!
I've got a pile of medical prescriptions; hopefully there's something that helps with the throwing up. Apparently, the chemotherapy isn't as heavy as the last time so I'm not expecting to lose my hair this time.
So the hope that the treatment would be restricted to radiotherapy alone was too optimistic but he didn't have a choice. One way or another he had to overcome the cancer and at least this hospital was the best in the country; he had to have faith in them.
During the first week of treatment, he had to put up with nausea, constipation, a feeling that his mucus membranes were burning, especially in the throat and stomach, intestinal cramps and stabbing pains round the anus and; "we're just in the first week. I can put up with it but it's depressing!" During the weekend he could stop the chemo tablets and the radiation therapy, otherwise it would have been just too much, but it was little consolation. Meanwhile the tests went on and the whole process became incredibly tiring with five more weeks to go. At every stage, his blood was tested but that was just to make sure he could continue with the treatment and they regularly checked the anus to make sure it wasn't being burned too severely.
The weeks went on and naturally took their toll but there's no turning back in situations like this; you just have to grit your teeth and bear it. Slowly but surely, the area of skin around the anus began to show signs of burn wounds and keeping the area clean without too much pain was a problem, but creams and encouraging words from the specialists kept him going. Radiation therapy can cause symptoms of burning, as if you'd lain in the sun for too long; and the wider the area that's radiated, the more likely there'll be damage to the skin.
By the end of August, he'd got shingles to add to the misery and discomfort but the oncologist said that at least the tumour seemed to be shrinking and as the course of treatment was coming to the end, there was light at the end of the tunnel. The relief that it was coming to an end was palpable. The healing process was also long and arduous and sitting and changing dressings was painful, plus he knew what sort of damage the radiation and chemo had done. His old friend, a bladder infection had returned, the shingles wasn't completely gone and sleeping was constantly interrupted with this pain or the other.
However, at the end of September he mailed:
The doctor called and everything looks okay. Monday, I see the radiologist. I've got to get another blood test after that and have to return on 17th December but after that ... no more visits to the cancer hospital!!
That news, plus the fact that his HIV tests hadn't come back with overly alarming results (although his immune system had obviously taken a battering and he looked like someone who'd just been through 6 months of cancer treatment) was an enormous psychological breakthrough. He could breathe a little deeper and look forward to what he hoped was a life free of cancer. He felt he deserved at least that.
That December, he went back to the radiologist at the cancer hospital for a check-up. He mailed me that afternoon:
I told the doctor that there was still a lump on the edge of the sphincter in my anus and I was worried about it. He said that we should keep an eye on it and told me to come back in March, 2013. At least he knows it's there and will keep it in mind, so I'm not worried. Hopefully, it's a remnant of all the treatment and nothing alarming. At least I can have a winter without constant doctor's appointments and hospital visits and the check-ups will just be routine.
Unfortunately, John's optimism after such a horrendous 2012 was to let him down again. 2013 was to prove a true annus horribilis and one that was to change his life more dramatically than ever.
At the beginning of March 2013, the lump on John's anus was beginning to cause some alarm and although he had an appointment on the 18th March, he went to his home doctor to see what he thought about it. The doctor agreed that it didn't look good and he was able to arrange an earlier appointment at the cancer hospital. The pit of his stomach felt like lead, as the realisation sank in that this may be the beginning of yet another hellish period. His partner and friends were just as shocked after all; what had 2012 been all about but to get rid of cancer once and for all? That said, nothing was confirmed as yet and the usual tortuous waiting began.
John had to get his head in order and think out the possibilities. He did some research and reasoned that they were hardly likely to use radiotherapy again as a treatment; the skin had been too damaged from the last time and wasn't likely to survive another long period of radiation. It would probably need an operation. In that case: either the sphincter itself would be spared because you can't remove too much tissue; or, more likely, they would have to remove the sphincter and surrounding tissue, both cancerous and not, to be sure. If that was the case then a colostomy bag would be necessary. Briefly that would mean removing the tumour, closing off the anus and linking up the healthy bowel tissue to the abdomen. There would be a hole usually at the front of the lower stomach and a bag would be attached to collect waste material.
John was 58, still a proud gay man with a healthy sexual appetite which, although it had been hammered by the traumas of the last few years, was still an important part of his life. The very thought of what may be to come was enough to make him doubt whether he wanted to carry on. However, he wasn't alone in this and had a partner who had already been through a lot with him. He couldn't leave him alone; and he also had a burning will to live. It had carried him through AIDS at its worst and two other forms of cancer and he was damned if he was going to give up this time without a fight.
These thoughts went through his mind as he waited for confirmation of what he feared was inevitable. You can't criticise anyone for thinking about suicide at times like this. When a disease attacks you at the very core of your being and the only option is to have invasive and reconstructive surgery, you really have to ask yourself very deeply if it's going to be worth it. John fully realised how difficult this was going to be for everyone concerned and especially Martin, his partner; but the fact that Martin was there was what made him decide to carry on and try his best to fight the cancer again. In the end they got on the roller coaster again together because that's what true partners do.
The cancer is almost certainly back with a vengeance but radiotherapy in that area won't happen again. It'll be an operation then and how extensive that'll be depends on the results of all the tests. It seems to be moving quite quickly now. They'll have to do another biopsy and then I'll have a CT-scan, a PET-Scan and an MRI scan to see if it's spread. I'll ask them on Thursday what the waiting time is for an operation.
I've got to let this all sink in. On the one hand I pretty much expected it but on the other, I half hoped that it was maybe a false alarm. It wasn't and now it's a question of how extensive it is. The radiologist said that if it's not too widely spread, they're optimistic that it can be brought under control (sigh).
Later that day, I got another mail:
One thing is certain; the anus won't survive. The tumour is right on the anal muscle and because it's a returning cancer, they'll have to remove it all. I have to be realistic and face the fact that I'll have to have a colostomy bag. The choice is simple: a colostomy bag or death: what would you choose? For me it has to be option one!
Credit: The American Accredited Healthcare Commission (A.D.A.M.)
And then the waiting began, with all the usual delays, tests, appointments for results and plans of action that he'd become so used to over the last few years. It's a killer in itself and his partner and I were all for storming the barricades and demanding instant action. Hadn't this man been through enough! It doesn't work that way though. They have to be sure about everything because with that sort of surgery, there's no turning back the clock and the last thing he needed was a "whoops" moment, if the experts had made a mistake. The clock was running but there was no way of winding it forward.
At this moment in time, the one thing John needed was time to digest everything he'd heard and everything he'd researched on the internet. The last thing he needed was people pestering him with questions but human nature being what it is, he had to deal with people's concern, their own fears for the future and their ideas of what's right and what's wrong.
Oh what can I say? The prospect of being an invalid hangs like a sword of Damocles above my head; I just don't know how much of an invalid I'm going to be. Not a pleasant outlook at all. I know I'm not alone in all this and I do choose to live on but I am considering my options. Not being treated or operated on and getting an opinion as to how long I'd still have for instance. I just want to know and weigh that up against the consequences of the operation.
Read Dave's blog HIV, Neuropathy and More: Avoiding Becoming a Nervous Wreck.