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Anal Cancer: The Point of No Return

Part 4 in the Blog Series "Anal Cancer: A Gay Man's Nightmare"

November 8, 2013

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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.

Dave R.

Dave R.

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.

More information about the whole colostomy process.

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.

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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.

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Anal Cancer: The Lead-Up
Anal Cancer: One Blow After Another
Anal Cancer: How Much Can One Man Take?
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General Information About Anal Cancer
More on Anal Cancer and HIV/AIDS


This article was provided by TheBody.com.
 

Reader Comments:

Comment by: Gerd (Dortmund, Germany) Thu., Dec. 19, 2013 at 2:32 pm EST
I didn't really want to read this, or the other three parts but I'd lost a friend to cancer recently and I just couldn't leave it alone. I'm so glad I read it in the end because it became a sort of catharsis for all the stopped up feelings I'd had when my friend died. I really hope other people who don't have cancer will read it and take the hints that they should do everything they can to avoid it happening to them. Especially gay people who already have HPV need to get checked up as soon as possible. You've done a great job here telling other people's real stories. It beats the hell out of reading it up in a text book. Thank you.
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Comment by: Sarah Dees (St. Petersburg, Florida) Mon., Nov. 11, 2013 at 7:54 pm EST
Excellent articles by Dave Richardson.
These articles are important because anal cancer patients have to be able to overcome the stigma of humiliation to reach out and get the help they need, whether they are male or female, gay or straight. I was lucky enough to make it and I have been cancer free since 2007. I admit it, I still tell people I had colorectal cancer, not rectal or anal cancer, because it's so hard to say that. And cancer is not over, even if you are supposedly well, or cancer free. It is never over. The side effects of treatment, the financial devastation I've gone through, the sexual side effects that happened that now make it impossible for me to be a normal woman any more. We are always told we have to get used to our "new normal" although nothing is ever really normal any more.

I feel for Dave's friends. What a hard and lonely road to travel. I wanted other people to understand what I was going through. I think these articles did a great job of sharing that experience. The part about how you are treated by medical people is so true. I know they have to be clinical, but certain doctors really do forget to treat you like a person and the humiliating, mortifying things you have to go through can be just awful. Yes, you have to adjust to it. Any sense of modesty about your body is the first thing they throw out the window.
 
I was ashamed and embarrassed during my treatment, so I was not able to reach out for help that would have made things better for me. I didn't get support. I hid out and remained isolated. Over time, my attitude has changed. I have done a lot of advocacy for cancer causes.
I will be sharing a version of these articles (with permission) in my feature in an online magazine.
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Replies to this comment:
Comment by: Dave R (Amsterdam) Wed., Nov. 13, 2013 at 3:29 am EST
Thank you so much for your comment Sarah and for reminding us that the loss of self, especially sexual self, is one of the most underestimated side effects of cancer and its treatments. I would encourage people to visit your site at http://www.examiner.com/cancer-advocacy-in-tampa-bay/sarah-dees and see the great work that you do for people living with cancer.


Comment by: Williams Moi (uganda) Sat., Nov. 9, 2013 at 2:47 am EST
i have today visited your blog during and HIV training in ADISABABA ETHIOPIA
THANKS
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Comment by: Jennifer Coltrane (Miami, Florida) Fri., Nov. 8, 2013 at 3:00 pm EST
I've just read this last part of the cancer story and had to go back and read the first three parts again to remind myself what a horrible time this must have been for this guy and his partner. I don't normally cry at stories like this but was moved to tears anyway. I lost a friend to cancer some years ago and this brought back how helpless you feel when you watch someone go through it. I'm not gay but I have HIV and I just hope lots of young men read this and decide to pay more attention to the health of their anus. If it's avoidable, men should do everything they can to avoid anal cancer but I don't suppose they'll take much notice anyway. Hopefully someone will make them read this story and make them think a bit more about what they do.
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