November 8, 2013
Anal cancer is not just a tumour to be dealt with but a life-changing event. Every day you deal with a new symptom of the treatment, the pain and discomfort. And ironically the toilet is now also your enemy! And the shower is your best friend!"
-- Susan V. Briggs, C.P.D.
After almost six weeks of waiting and endless tests and appointments, John was finally admitted to the cancer hospital on 9th May, 2013. The following day he was operated on and his body changed forever. The anal tumour was successfully removed and his intestine and colon were re-routed to an opening on the front of his abdomen. There a colostomy bag could be fitted to take over waste removal functions. The anus was temporarily closed off and would play no further part in his daily bodily functions.
If only the story could end there. The problem is, the cold, hard facts about anal cancer, its removal and the necessity for a colostomy or stoma bag, don't really tell the story of how this affects someone's life both physically and mentally, and they certainly don't give you an idea of the time scales involved.
John needed another operation two weeks later, to re-open the wound and prepare it for permanent closure. In his case, the re-routing of the colon meant that there was a six-inch-deep hole which needed to be properly closed off. This meant that infection had to be avoided and a week later, yet another procedure followed where tissue was taken from the back of his legs to be inserted into the wound in the hope that the body would accept its own tissue and heal over naturally.
In the meantime, he had to get used to the stoma bag and the strange feeling that excretion was a completely new process. He was in pain, both from the stoma wound on his abdomen and the larger wound at the back and had to be on opiates to keep that under control. This meant that infusion tubes, catheters, nutrient tubes and various other attachments were maintaining stability while his body got used to the new situation.
Lying on his back in that room gave him more than enough time to adjust to the new realities of life without a functioning anus and with a new "waste disposal unit." That plus the pain and discomfort and the feeling that time was standing still was depressing beyond words and a very difficult time for both him and Martin. The wound was leaking and various methods were tried to reduce the inevitable infection in the fluid that came out. The body was healing itself as it does but at the same time, doing its best to reject what had happened to it but it felt to John as if nothing was getting better quickly and things were deteriorating.
The staff in the hospital were wonderful in doing their best to keep his spirits up. They see it every day and are skilled in making patients' recovery times as comfortable as possible but they're also dispassionate and by necessity professional. They can't see inside a patient's head and really understand what such a life-changing operation can do to someone's self-confidence but with John they did their best.
Very quickly, they tried to get him on his feet and get the leg muscles working again. This was done by means of a tilt-bed and several episodes where he nearly fainted from the exertion. Looking back, he could see the humour in the situation but it was hard work.
Slowly but surely the pain medication was reduced but needed to be adjusted quite frequently. Hospital staff will do their best to get you off opiates as fast as possible but sometimes move a little too fast for the patient's comfort. They want to avoid addiction and they want the brain to take over dealing with pain on its own again but John quickly learned how not to be bullied, however well-meant.
A great deal of the pain came from the wounds on the back of his legs where they'd taken tissue to fill in the anal wound and stretching his legs as the skin healed again was often a problem.
Once again, it was painfully obvious to both him and his partner that you really are just a slab of meat in a hospital. You have to forget any form of embarrassment you ever had and give yourself over to the sort of physical scrutiny that would have given you nightmares before but it's all to save your life. John quickly got used to it as various young women took over dealing with his bodily fluids and messes and leaks and accidents but he was immensely grateful that they could.
Eventually, although it seemed like he'd been lying in that hospital bed for years; on the 24th June, only six difficult weeks after the operation, he was moved lock, stock and barrel, plus various medical bags and supplies, in an ambulance to another hospital bed in his partner's parents' house. The hospital stay was over (although the appointments and return visits are still going on to this day) and he was delivered over to the care of his partner and various local medical nurses but at least it was a home environment and he could look out of his window and see the garden and the birds and the trees. It had felt like it would never happen but he was immensely grateful when it did.
He will need more plastic surgery to restore some normality (at least regarding appearance) to his buttocks, anal region and perhaps also the backs of his legs but that can only happen when everything has healed up properly. We were shocked to see what they'd done to the back of his lower body. It's not just a question of a quick incision, whip out the cancer and then back to posing in speedos on the beach! It's major surgery and his buttocks and legs took a battering but time really is a great healer in respect of skin and tissue repair and hopefully any cosmetic surgery will be minimal. He was relieved that the initial investigative operation for the colostomy was done via keyhole surgery -- it spared him a large scar on his lower stomach.
The tissue around the colostomy entrance has also swollen up, a bit like a hernia, so that will probably need to be surgically fixed too but the wound at the back is almost healed up and very little fluid escapes these days. The swollen ankles and feet are almost back to normal and one or two worries about diarrhoea, urinary tract infections and other almost unavoidable discomforts, are causing him less worries than they might have done a month or two ago. It has been a traumatic year, added to three traumatic years before that but his strength of character is seeing him through and he's cautiously looking more optimistically towards the future and what he might do. As yet, it's too early to really plan ahead but the signs are looking good.
I should point out the vital role his partner Martin played at that point. When John arrived at his temporary home in Martin's parents' house (their own house has four flights of stairs -- that was impossible at that point), the in-laws were away and Martin had to take over John's care. This sounds like a sort of given but it was far from that.
Nobody has cancer alone. Their families, partners and friends go through the process too. They don't suffer in the same way physically but they do go through their own traumas and sleepless nights and that can be a fraught and difficult process. The patient may be angry or emotional at what's happened to them. They may also have been fiercely independent, pre-cancer people and relying on others may come very difficult to them. They may have held the reins in the household; done the shopping, cooked, been handymen or women and generally been proud of fulfilling that role in the relationship. All of the above applied to John and Martin. They were used to fulfilling their relationship tasks in their own way. They'd never imagined that this sort of dependency situation would arise but it did and it was a problem.
Martin had of course lived through the previous cancers too and had some experience in having to assume responsibilities he wasn't used to but this anal cancer was a whole new ball game. He was naturally terrified that he was going to lose his partner and that in itself causes breakdowns and frictions in a lot of relationships. Some people just can't cope with it. Martin surprised himself I think, in how he rose to the challenge. When he realised he had to care for John in a real physical sense, for however short a period, it hit him like a sledge hammer. Remember, this meant changing dressings for a really ugly wound, bathing and cleaning where necessary, cooking, cleaning, shopping, running errands and generally running the house. A nurse did come round fairly regularly to do certain things but mostly it was left to Martin to take over. That he did exactly that is a tribute to his maturity. John sent me a mail at the end of June:
Martin has got all his priorities sorted out now. Today began well and I really can't or won't complain. He's thrown himself into looking after the wound and we don't need the nurse to do that anymore. I'm so glad he isn't "freaked out" by the whole thing and is just concerned for my welfare.
Of course they had their "off" days (especially John) when one or the other was feeling low, or depressed or just plain tired and that is to be expected but I know John was both relieved and surprised that Martin did such a great job.
He's had such a lot to put up with from me the last few months and I never could have expected him to react so well. I'm grateful, it's made life so much easier.
All-in all, although you would never wish one cancer, never mind three, on anyone, it seems to have made their relationship even stronger than it was before. If ever the saying "strength through adversity" was true, it has certainly applied to John and Martin.
This article is not so much about cancer and gay men, or even anal cancer; much more information on those specific problems can be found by following the links. It's meant to show readers what it means for real people to go through these things. By using my oldest friend as an example, I hope it has put some meat on the bones of dry medical facts and made people aware that cancer is a life-changing event.
For people living with HIV and LGBT people in general, it may be wise to read up a little on how anal cancer can be avoided if it stems from HPV and other sexually related causes. It's certainly a growing problem amongst the LGBT community as a whole and the HIV and male community in particular. Men and women are living longer with HIV and many cancers are more likely to appear the older you get. Knowledge is power and being aware of what anal cancer can involve may just help you avoid it.
In the meantime, John and Martin are doing well. Slowly but surely, they're coming to terms with living with the fallout of this cancer. There are no guarantees in life but there are options and they've taught me that you have to make the best of the cards you're dealt -- what's the point otherwise!
Much more, important information can be found here:
Read Dave's blog HIV, Neuropathy and More: Avoiding Becoming a Nervous Wreck.