April 25, 2005
Breast Lumps And Swimming
Two dramatic things have happened in the bathroom of room 626 in the Grand Hotel in Brighton.The first was Patrick Magee blew it up by planting a bomb behind the bath panel in room 629 across the corridor.
The second was my accidental finding of a lump under my arm whilst washing, getting ready to go on a wild night out on the eve of my birthday. It was April 2000 and I was working as a medical rep.
Now I'd like to tell you that I immediately and sensibly trotted off to get this lump checked, but no,I simply thought,"Oh! What's that?" Cancer was not high on my list of possibilities. Only a vague fantasy in the head of this renowned hypochondriac. In fact I spent the next four weeks sobbing down the phone to my colleagues that I could not get my head around this training course for my new job. I'd bleat "How can I remember 78 competitors, doses and prices and BTW I've got a lump?" they'd say "Shelve the lump, just learn the competitors." And so I did. I'll even admit to a sneaky crib note handily tucked around my rising lump in my bra. I got through the course and presented myself to my GP in Newburgh within an hour of reaching home. Her face went pale, her mouth dropped open, I said" I've got a lump" (innocently) she said "I can see it" (faintly). I left saying I wasn't worried, I remember her saying "You're not?" with a note of disbelief.
It wasn't till a week later that the penny dropped. Big style. My surgeon finally, finally called, he said "There's no getting away from this Alison, those cells are definitely abnormal"
"Oh?" I said cheerily "Does that mean there's less chance of them being benign?" (Still in fantasyland).
"I'm sorry" he said" I'm so, so sorry...."
In those moments my life as I had known it fell apart, I screamed, and screamed and screamed, just as you do in a dream when faced with the terrifying unknown. I went down the usual path, that path all node positive breast cancer patients go down. Suffice to say I ended up in my isolated cottage in the middle of nowhere surrounded by thirtyfive bouquets of fading flowers, no food and too sick to get out of bed, on chemo and in terrible pain. I was desperate, Bridget Jones never got breast cancer, heck, I didn't even have a freezer, I was a Fabulous Girl who lunched, I hadn't kept food in the house for years! I was so bald I ended up covering my mirrors like Miss Haversham.
Ten months of trauma followed, too long for folk to keep up, they tried hard, but at my age people are busy with careers and children. My family did what they could, but they too were miles away. I can look back and realise I could have asked my lovely GPs for more help, but instead I dragged myself in my BMW dressed to the hilt, blonde bewigged, to see them. NEVER called them out, I was NOT a sick person. I kept much to myself. No BC nurse was available at that time and the service was well overstretched. I learned there was really no-one, especially at the weekends. How could I phone up my friends? Would you really like your friend with cancer calling at the wrong moment during a dinner party? I rest my case....
You'd expect that finishing treatment would be a relief. I thought that too. I bought a new Black Beetle (the company had understandably filled my job but very generously continued to pay me, the BMW was uplifted). I picked up the Beetle the last day of my radiation. I thought "I'm FREE!!!" sort of singing the Who song all the way home. But reality soon hit, here I was, recovering from a trauma, but no-one thought it was an emergency anymore, I on the other hand was terrified, I'd had an axe murderer in my Wonderbra, but no one would tell me he wasn't hiding in my wardrobe, or my liver, or my bones......they just said "There are no guarantees". I was left an emotionally fragile wreck, unable even to put my feet on the floor in the mornings (nerve pain) or, for that matter, sleep. Nightmares, I'd forgotten how to fall asleep.
I started bleating about pain in my pelvis in October 2001, six months after finishing treatment, I still had pain in my arm and breast, it felt like I'd been flayed, only carbamazipine helped, a little, I could not bear to wear clothes. The Maggie Centre directed me to Mike Dixon in Edinburgh. He told me my surgery was incorrect, hence terrible pain, he did a Z plasty on my scar. It let my arm lift, but looked awful, had scar saying Z for castastrophy across my chest and nipple four centimetres left of centre.
I went to Arran to recover, my favourite place, and sitting on the deck of my parents’ caravan at Lamlash I received a phone call from my brother telling me that his girlfriend, diagnosed with breast cancer a year before me, was dying of brain mets. I watched the moon over Holy Isle. I thought of life and how precious it is, I thought of my upcoming lattisimus dorsi reconstruction. I resolved to swim from Holy Isle to Lamlash, I think because I felt I could not do this body changing surgery unless the rest of me was fit, what was the point otherwise? I started swimming on the 19th Dec 2002, at first could only manage two lengths, gasping, quickly got up to 20 lengths, 40, 60...pause in Feb to have my back muscle tunnelled to front, biggest op in my life, was told six weeks to swimming, but was obsessed so was back at four weeks post op, despite back filled with fluid, anaemia, desperately trying to get my stomach off the pool floor...not a pretty sight!
I found out that in fact there was an organised Lamlash Splash doing just the swim I'd planned! Oh Joy! I lied on my application form, yes, yes I can do all that! I decided to raise money for a new Younger Womens Group at Maggies in Dundee, I've been a member of the original Edinburgh group for three years. By the time I'd told the world I was going to do it..well...I HAD to do it .....1.3 miles, in Oct, in 400ft deep water, 12 degrees.....
Which is why I found myself expected to jump off the jetty on Holy Isle, fearlessly (NOT!!!) thinking "WHAT HAVE I DONE???"
At first the swell was so bad we could not get away from Holy Isle, eventually I found myself in complete silence, riding high waves on my back, staring at dark clouds, double rainbows and two swans flying overhead, the house on Holy Isle did not appear to get any further away, nor the pier at Lamlash get any nearer. Then the rain lashed down. I just kept on, kept on, kept on swimming, thinking of Erin. Thinking of Georgie. Thinking of Nick. Thinking of Elana and all the girls I'd met and lost to cancer. The church at Lamlash got nearer. Too late I realised Cordin (where we'd been told to head to) is to the left and not to right. I was headed in the wrong direction. I swallowed so much bottle green salt water my stomach was heaving!
But at last I spotted my Mum in her purple anorak, jumping up and down cheering with my Mollydog, my biggest fans! When at last I reached Lamlash pier, realised that after lat flap op I could not climb the ladder so had to crawl up the slipway (so called because its SLIPPY). Not graceful, but I'd made it. The local photographer took pics but the crowd laughed as I insisted on fixing my hair and makeup first. Was chilled to the bone but happy not to have embarrassed self, three out of ninehad not finished , but I had. Final total is yet to be counted but think I raised around £1500, maybe more.
That was on the Saturday, 4th Oct,2003. On the Monday I was anxious as the ferries were cancelled, the bad weather during the swim had worsened, the ferries were off due to the stormy sea. I had a begged for a bone scan the next day and I was vaguely anxious to get home. The NHS had told me NO scans for my ongoing pelvic pain as my xrays were ok, I'd stalked off in the huff to use my BUPA, to new oncologist in Edinburgh, had bone scan on 7th.
We finally got a ferry, Mollydog and I sat under the back of the ferry, wrapped in blankets, watching the lowering sky and the sea boiling. The ferry listed severely to the side, yet I was not sick, just filled with wonder at nature and the greyness and power of it all. 24 hours later I found out I have bone mets in my pelvis, Henny Penny the sky is Falling again. It ain't good, the mets were hidden behind my bladder on previous scan, I found out that Xray (previously relied upon for POM..peace of mind) only show mets after 50% of bone used up (good tip that).
I'm on Femara now, Zometa infusions to start soon, its unfortunate that I've spent the last three years running the biggest online support group on the net, I know the truth, blast that knowledge, hard to stomach now.
But no matter what, I'll be there...jumping off the jetty on Holy Isle on 28th Sept 2004! I'll get there even if I have to be towed across! I've had to reduce my mile a night training in local pool due to breathlessness (I think from Femara, hope so anyway!) to 1000 metres a night, seven days a week. But I'll make it, its not that hard, you don't think of the jellyfish etc when you are out there. So far I have two recruits, party on the beach courtesy of the Eastons at Errol Surgery, new recruits welcome!
Its odd, but despite my knowledge of this disease I do not feel like this is the end, it may be the Cipralex that my wonderful GP Morag Martindale has prescribed, or her help and support in getting me through this, I still feel I will be able to do my own personal marathon this year and many years to come.......
Reprinted by permission
Hoolet - The Magazine of RCGP Scotland