Cancer

What does that word mean to you?

What experience of it have you had?

The first person I really remember it stealing was my Nan. There had been other relatives before that who as a small child I had seen shrink before my eyes, but they were old, and they died, that’s what old people do isn’t it?

My Nan died when I was 17. She had stomach cancer. I will never forget my last view of her. I wish I hadn’t seen her like that. She was an amazing woman. She was a housekeeper for a very wealthy family in Chelsea. I would go sometimes in the school holidays and help her at the house. A truly spectacular house and garden. She lived in a flat in Battersea,her bedroom window overlooked the Thames and there were geraniums around the door. She used to give me cheese and boiled egg salads with beetroot and salad cream and tinned pears with evaporated milk. We had to put her rubbish down a chute which I thought was fascinating. She took me to Battersea Park and St James’s Park to feed the birds; sparrows sitting on my hands. She taught me that ‘It doesn’t cost a penny to smile’

Years later my Dad was diagnosed with a brain tumour. On my 26th birthday April 1997 he drove home from work and couldn’t lift his arm to lock the car. That was the first indication that anything was wrong. He died May 1998. In that year I watched my Dad, a towering giant of a man, slowly die. His tumour was inoperable, but he was offered and took radiotherapy in an attempt to shrink the tumour. We found out on the Christmas of 1997 that the radiotherapy had not worked and there was nothing else they could do. He had huge fits and seizures as the tumour pressed against his brain. I remember being with him for a particularly spectacular one in the supermarket. I watched my 6ft 4 dad, a proud and highly intelligent Police Chief Inspector become a bald,(Radiotherapy) bloated (steroids) zimmer frame using, convulsing man who lost his ability to find the correct word when trying to talk. He was 58. He only got to meet 2 of his 6 grandchildren.

And of course I’ve had my own brush with it, and continue to try and stop it setting up home in me again. Because all these operations and check ups are to stop it coming back. If it comes back it’s not good news.

So without wanting, in the words of my Dad, to ‘state the bleeding obvious’ I’m not a fan of cancer but it’s not a new enemy to me.

When I was diagnosed I was in a really good place. After years of struggling to juggle work and single motherhood I had decided to take a break from work for a couple of months, destress and reassess life the universe and everything. I was chilled, my son was happier, money was tight but I was happy. I’d started investing some time in me. I finally had time to breathe. This made the diagnosis somewhat harder to take (not to mention the loss of sick pay I would of got!)

I remember my Macmillan nurse saying that what is hard about certain cancers is that you don’t look ill. The archetypal cancer patient, stick thin, bald and sick bowl in hand did not apply to me. A personal gripe of mine is when people say ‘Oh so you didn’t need any treatment then’ What they mean is that I didn’t need chemo or radiotherapy. I can never imagine anyone saying that to someone after a heart bypass.

Cancer has taken so much away from me; Loved one’s, body parts, certainty, peace of mind.

But cancer has given to me too. It has given me a priceless opportunity to find out what really matters. It has allowed me at quite a young age to truly realise that life is short and to live accordingly. It has highlighted those people who could handle it and those who couldn’t or didn’t want to. Whilst I have lost a lot of ‘friends’ it has connected me with many amazing people who I would never of met otherwise. It has taught me how to be vulnerable. It has taught me how to trust. It has taught me how to let go.

So it’s not all bad.

It’s two weeks until I go under the knife for the 3rd time in 2 years.

3rd time lucky?

All dates confirmed

I’ve been waiting….no surprise there….for a call from the hospital to see if my operation could be bought forward at all.

It seems that our family is getting it’s monies worth from the NHS at present as myself, my son and my mum are all waiting for operations.

Trying to organise that so each is available to support the other has been a bit of a logistical nightmare. Hence the request to bring it forward if possible.

It wasn’t possible. The consultant had time but there was no theater time available. Call me old fashioned but I’d rather like my surgery to be done in an operating theater rather than in a corridor!

Factor in the junior doctors strike (which I support 100%) I guess I am lucky not to have had surgery further postponed.

I have my pre-op 8th December ready for the off on the 11th.

Anger?

For those of you that don’t know me or don’t know me well I may come across as this tower of strength, wafting through life with a joke and a smile;taking it all in my stride.

If you think that, I should congratulate myself, because that is the facade that I like to hide behind.

However, like most people, I can’t do it all, cope with it all, deal with it all without collecting some bashes and bruises along the way.

I wish I could cry. I’m not a good crier. If you’ve ever seen me cry you know I’ve totally come to the end of my tether. Few people have seen me cry, unless it’s the final of Junior Masterchef or something like that. To cry about my own shit? Rarely.

My default emotion is anger. Someone wise said ‘Angry is just sad’s bodyguard’ and how very true that is. This makes me incredibly hard to comfort, help, reassure because quite frankly I’m not a very nice person when I’m stressed, scared and anxious. I am that dog that will bite through fear rather than cower in the corner whimpering.

What exactly am I angry at? ……………….How long have you got?

I’m angry that cancer and treatment and operations and sickness and vaginas and appointments and hospitals and biopsies and results and prognosis and check ups are part of my and my son’s vocabulary and routine. I’m angry that I have to go through more bullshit with no guarantee that it will be the end of the bullshit. I’m angry that I’m too fucking proud to collapse in a weeping, sniveling heap. I’m angry that I’m angry.

Of course you can substitute ‘sad’ for the word angry in all of the above. But sad is weak and I am strong. Yeah right.

Someone said to me ‘I don’t know where you get your strength from’

I don’t get my strength from anywhere I just hide my weakness very well.

New Op date.

Phone call this morning telling me that 16th November is no longer available.

Given a choice of 11th Dec, 28th Dec or 4th Jan.

Bit like a choice between eating shit, walking on fire or sticking pins in your eyes.

Settled for eating shit (11th Dec).

Woohoo…Christmas is going to be so much fun this year.

Some light reading for me……but you can look if you like.

https://books.google.co.uk/books?id=xJxh22oki6UC&pg=PA255&lpg=PA255&dq=upper+vaginectomy&source=bl&ots=A5ffgYqK3c&sig=UuyI99_Km9Gx5fGCZLOUqkYW6YA&hl=en&sa=X&ved=0CEYQ6AEwCDgUahUKEwi3nr2JgPrIAhWD0RQKHU_tAKQ#v=onepage&q=upper%20vaginectomy&f=false

https://books.google.co.uk/books?id=hsMne5mAXSIC&pg=PA620&lpg=PA620&dq=upper+vaginectomy&source=bl&ots=–6TmmHLOl&sig=dgg1tMnkPlxml3hBaqOwAUp2zho&hl=en&sa=X&ved=0CEoQ6AEwCTgUahUKEwi3nr2JgPrIAhWD0RQKHU_tAKQ#v=onepage&q=upper%20vaginectomy&f=false

http://cancer-therapy.org/CT/v5/A/03._Atay_et_al,_19-28.pdf

https://books.google.co.uk/books?id=WEJ3lKwBWIoC&pg=PA228&lpg=PA228&dq=upper+vaginectomy&source=bl&ots=WxtKGk8jdm&sig=xa1Pu-LJ8Q2XJ1ElctteMrVCd1U&hl=en&sa=X&ved=0CEwQ6AEwCDgyahUKEwi_47vlsPrIAhXEXBQKHRcGAqs#v=onepage&q=upper%20vaginectomy&f=false

Answers to Questions.

Like a child who asks questions they already know the answer to, I went along with my list, seeking reassurance. I knew the answers to most of them before I went but needed to triple check what was what.

So here’s the questions….and answers!

  1. What happens if I do nothing? There is a strong likelihood it will turn to cancer.
  2. Why vaginectomy and not laser? Too widespread an area to remove easily and effectively by laser, need a good sample to send to pathology.
  3. Risks of vaginectomy? Infection, bleeding, blood clots, risk of anesthesia,bladder irritation, usual stuff, but what can happen and does is that a heamatoma (blood blister) can form along the scar and that needs to be burst and drained. (nice)
  4. Vault smear results (They came back borderline) Waste of time? Can’t remember the answer to this. Don’t think any doctor likes being told that his patient considers somethings he’s done as a waste of time. Biopsies trump smears so pretty irrelevant anyway but if I can dodge a procedure in the future I will.
  5. What won’t I be able to do and for how long? Can’t drive for 2 weeks, 2-6 weeks for general housework, shifting, living etc! He says I can get back on my bike in the new year! Great news.
  6. Guarantee that this op will be the last? Nope. No guarantee there.
  7. If cancer is found what will you do? Radio therapy.
  8. Anus. Can you biopsy it while I’m under? ‘Why wake up with a sore arse as well as a sore vagina?’ Point taken.
  9. Swollen thigh. Lymphodema? Wasn’t too worried or massively interested. One for Jane I think.
  10. How many vaginectomies have you done? 6
  11. Is sensation I’ve been feeling significant? (I’ve had an ‘odd’ feeling top left of my vagina, he says abnormal cells are there but also in other places)
  12. What does ‘warty appearance’ mean (this was on a letter from him to my GP about the lesions) Just means they looked very different from 6 months ago and that is concerning.
  13. Is there an argument for having a total vaginectomy and reconstruction now? My thinking behind this is that if a total vaginectomy is done I could have a reconstruction done. Apparently this is not done at Bath and I would have to travel to London or Glasgow. He says I’m better off having this partial vaginectomy as my vagina will still work. He said most reconstructions are not that good and many women who have them end up having anal sex anyway. (Fingers in my ears….LA LA LA at that point) Recommends I measure my vagina to reassure myself of what I have left. Told him I won’t do it before the op because it would be a case of ‘Here’s what you could of had’ I have to try and remind myself that these conversations are not banter down the pub, but really, could anyone have conversations like this in a grown up serious manner? I can’t.

He has told me that he does not like doing this operation. This was a week ago and it really upset me. I told him that he should find someone who did like doing them then. I told him that if I wanted someone to come and clean my oven I wanted someone who bloody loved doing it not someone who hated it.

He knows he upset me and explained today that he doesn’t like doing it because it’s hard, tricky and awkward.

‘Like peeling a banana from the inside’

I had made my mind up before I went in that I would have to have it done. And nothing he said changed my mind one way or the other really.

So I am provisionally booked in for 16th November. But with Nick operating, who has done my past two surgeries and who I hope like cleaning ovens just a little bit more.

Ride The Night

One of the things that’s pissed me off is the fact that I may not be able to complete Ride The Night.

Apparently sitting on a bike saddle for prolonged periods of time when you’ve had a chunk of your vagina removed isn’t recommended….who’d of thunk hey?

So tonight, with a little bit of banter with the ride the night girls we have come up with a cunning solution.

I will hire a rickshaw http://londonrickshaws.co.uk/our-services/ and wear one one of these. http://www.escapade.co.uk/fun-costumes-sale/big-pink-costume.asp

I will wave regally, ask people when they last had their smear, and hand out vagina cupcakes.

Sorted.