it's a gay old life

blogging to survive

2011-04-14T10:51:25Z

Writing as therapy is an established coping mechanism but I would be interested to hear a health professional's view of this growing modern day phenonema and its health benefits. I believe blogging is basket weaving for the twenty first century.

There are an incredible variety of blogs out there. Some are deeply emotional, some educational, others full of humour. They are real life soap operas.

I was recently diagnosed with cancer and have found blogging incredibly valuable in many ways. Friends and family are naturally very concerned at this time and I want to keep them informed but I found repeating the daily events around the time of my diagnosis both tiring and stressful. Each time I had to share or update my story with a concerned loved one, I felt the pain of the diagnosis over. At one point, I simply unplugged my telephone. Blogging enables me to update all my loved ones in one go and importantly, share my news in a considered way and at my own speed.

Cancer brings with it a host of emotions ranging from worry and fear to loneliness and even love. These emotions are often very mixed and hit with such speed, it can be hard to process and express them clearly. By blogging, I have been able to process and present my news in a way that I am comfortable with.

My particular cancer and its treatment has had some effect on the clarity of my speech which can make conversation distressing for me and must be worrying for my friends and family to hear. Communication by blog gets round this.

Anybody being treated with cancer will tell you they spend a lot of time in hospital waiting rooms. To describe this as boring doesn't come close. Sat alone for sometimes hours with a dog eared copy of an out of date magazine and the worry of the meeting or treatment that is ahead if you for company can be torturous.

Should you ever find yourself in a waiting room at the Royal Marsden - and I sincerely hope you never do - and see a 44 year old man tapping into his iPad, that'll be me.

Example of my blog when I am using humour can be seen by clicking here

or visiting http://cancerpants.wordpress.com/2011/03/30/cancer-pants/

Hiroshima

2011-04-14T10:29:18Z

Hiroshima

Posted on April 13, 2011 by cancerpants

The sound of the chemo running through my head is deafening. I feel as if I am a passenger on an early space shuttle, we are taking off and I have been strapped to a reclining seat. I am issued with a light blue hospital blanket, a nylon sleep mask and for protection, a pair of two dollar noise reduction headphones. Hopeless and helpless.

Now in flight, my chair is wheeled into a sealed room, the walls of which are lined from floor to ceiling with television sets. A further five portables with their backs removed are carefully positioned three centimetres from my head to form a cathode helmet. Every set in the room has been switched on for days, probably months, and although their volumes are turned up, each has been tuned to a blank screen and I am drowned in the sound of electronic white noise silence.

The pressure is building up in my head. I sit up and my chair is moved to a sound proofed chamber where thirteen invisible Nazi violinists surround me, working in shifts to play the same note over and over. This is tension in sound form, like waiting for murder to happen in a Hitchcock film. When the Nazis take a break and just as I think I might be left alone, Beelzebub himself comes and sits on my shoulder, smiling at the pain he causes my inner ear as he runs a single red bony finger around the rim of a wine glass wetted with his own satanic spit.

I initially welcomed the chemo. I heard the word platinum and pictured rivers of pure precious metal flowing smoothly through my veins destroying cancerous cells growing in little organic shaped clusters, like laying an Autobahn over a few weeds. In fact, it’s strength and high level of toxicity make it feel as if the doctors have sent in the US army to stop a dispute about change by two old ladies in a wool shop. There is a thin line between nuclear medicine and nuclear war.

This. My own private Hiroshima

farewell to my smile

2011-03-20T13:58:11Z

The news was as miserable as I had feared. They want to remove SIX teeth. I could barely speak to the dentist when she told me. Four of the teeth are wisdom teeth and two others form the side of my smile. I made it past reception, found a quiet(ish) corner and cried. Of course, I know the prospect of being alive is more important than having teeth but my smile makes up a big part of who I am and it feels a particularly cruel side effect - the taking of a smile.

Options to replace the teeth seem limited. Nothing until well after treatment and even then, the best they can offer is a denture. I think they can't do implants because of the effect of the radiotherapy on my bones. Does anybody know if there are other options?

That was the start of the week. The lump in my neck that appeared after surgery seemed to be going down but my Oncologist wanted me to have it scanned to check what was going on. As it had been reducing in size, I had banked on it being a gland swollen from the tonsillectomy but the ultrasound scan revealed it to be another tumour. 8mm. I pretty much repeated my dentist routine. That is, held it together while I was in hospital and cried at the first opportunity. Another damned tumour. Will this never end?

My Macmillan nurse told me not to fret and that it is not uncommon for a node to develop into a tumour at this stage and it is unlikely to change my treatment plan. Don't fret? I feel like cancer is eating away at me. I had feared starting treatment, now I can't wait to get started.

teeth, camera, action

2011-03-14T08:40:59Z

I am meeting with the hospital dentist today to decide how many teeth I can keep ahead of my radiotherapy treatment to my neck. I asked my nurse last week how they would replace any they remove. She replied without a moment's hesitation, 'They won't. You can't have any replaced or even dentures fitted for at least a year after treatment until your gums have recovered.' Time stopped, I felt physically sick with fear and I felt myself zoom back from the room, like a fast camera movement on a TV show. I'm picturing myself: no hair, no teeth, a feeding tube poking from my stomach, no ability to produce saliva, a burn on my neck. It ain't pretty.

I had planned to have some cosmetic dental work done this year, which tells you how much I care about my teeth. (I'm the one on the left in the picture). I honestly don't know how I would cope without them. My job requires lots of face to face meetings and presentations, how would that work and how would I feel about the indignity of eating baby food but most of all, my partner and I are planning a civil partnership and it would mean I couldn't smile in the pictures. I couldn't even eat the wedding breakfast. I wouldn't even be able to smile at the postman in the morning.

Neither of us are especially religious but I don't mind admitting, we went on our knees last night and prayed that I be allowed to keep my teeth. Will post again to let you know the outcome.

Bang! There goes the French doors

2011-03-10T16:21:24Z

In January I was having romantic dinners on the beach in Koh Samui, in February I had a fantastic annual appraisal at work and planning the year ahead with my team, in March on a routine check up my doctor tells me I have a tumour on my tonsil that is probably benign but will need removing.

The recovery from the tonsillectomy has been as long and painful as the doctors predicted. Seriously, if I managed to shower and eat, it was a 'good' day.

I only managed to leave the house once last week for a hospital appointment where, in pain and drugged to the eyeballs, a mild mannered doctor delivered the news that the tumour they removed from my tonsil was cancerous (Squamous Cell Carcinoma, grade T3). He thinks he's managed to cut it all out but in light of it being an 'aggressive cancer', I will need radio and chemotherapy therapy at which point he introduces me to Lyn, 'my' Macmillan nurse and other doctors who will be overseeing my radiotherapy/chemotherapy. Still a bit of a blur really but I remember him saying I'll get to meet a dietician and speech therapist next week. It's only in the last couple of days I'm thinking, why the HELL am I gonna need a bloody speech therapist?!

Because of the position of my tumour and where they will be treating me with radiotherapy, I have to see the hospital dentist next week who will decide if I have to have any, some or even ALL of my teeth removed before they start treatment. After treatment, my gums will lose their ability to heal meaning if I lose any teeth in future, well, I'm not exactly sure what that means but it can't be good, huh?

The more I learn about the side effects of the treatment, the more harrowing it sounds. Nausea and fatigue, of course, but it will leave a burn on my neck. I won't be able to go in the sun (maybe with total sunblock?) and I can't use moisturisers during treatment. I'll almost certainly lose my hair, possibly including eyebrows and eyelashes (which usually grow back so I suppose no big deal) and my saliva glands are likely to stop working and their function may or may not return (which comes with a whole host of issues on its own), the list goes on. I read a page of the literature the hospital about side effects then have to put it down before I can muster the strength to read more.

A thousand questions race through my mind. Some big ones: Will the treatment work? How will I cope with the side effects? How long can I afford to stay off work? Will I need to lose some or even all of my teeth? And other things that while perhaps not life threatening, feel like a big deal to me: What will I look like? If I can’t exercise, will I become clinically depressed? Will I be able to wear a shirt for work after treatment or will it rub too close to the area treated by radiotherapy? Will the scar fade?

They have suggested fitting a feeding tube direct to my stomach before I start treatment so that if/when I am unable to eat, they can maintain my weight. (I've not mentioned I'm trying to lose half a stone). I'm dead against it, of course. It feels intrusive, undignified, will leave a scar, is prone to infection and sitting down to dinner each night is one of my greatest pleasures (even if it has taken me half an hour to clear my plate recently). My partner, David, is forever running his hands over me in bed and telling me how much he loves my smoothness. Having him need to feel around a plastic tube protruding from my stomach, well, kinda kills the moment, no?

My partner been heroic. Taking me to every appointment, keeping me calm, making sure I eat, telling me I am beautiful and giving me tea and hugs. A superhero, of sorts though he keeps pushing me to do stuff when in all honestly, there have been days I have struggled to find the strength to make it to the bathroom. He's more the tough matron side of nursing than the gentle hand.

He has been here before, of course, caring for his previous a partner who died of cancer and I am feeling tremendous guilt that he has to go through it all again. Most of things I have been able to offer him as a partner (double income, cooking, housekeeping, counsellor, business consultant, PA, sex, etc) seem to be fading. Some to return, of course but at 43 years of age and with the diagnosis still fresh, it does feel a tough call.

I’m hoping that sharing my story will expel some of the fear.

Fulham P