More apologies...

I am pretty poor at keeping up with this blog now. This is partly because I have not been near a computer lately. I am spending most of my time staying with friends and enjoying the 'lack' of treatment. I was in deepest, darkest rural Sussex most of last week staying with an old friend from my university days. I am off to rural Hertfordshire this week...

This, of course, all comes to an end this time next week when I begin radiotherapy. Then it will be treatment every day for a month. No chance to getting away from it all during the week. My social life will have to happen at weekends. Lordy, it will be like having a job again. Indeed, the only way I can think of this coming month of September and radiotherapy is like a 'job': I will have to commute in, do the 'work' and commute out again.

You'd think you would be given the same appointment each day, wouldn't you? Nope, I have different times each day; half hour appointments any time between 8.30am and 5pm. Oh well, I suppose I won't get too bored of it...

Last week, before I disappeared off to Sussex, I had my first 'planning meeting'. This is where they measure you up for the radiotherapy...blasting you with protons and glance rays. Hurrah.

I spent one hour in agony on a board with machines moving around me, nurses marking my skin with black pens, bits of metal measuring my skin and x-rays.

Apparently, they irradiate to the millimetre.

There is a reason the average breast cancer patient doesn't start radio until 6 weeks plus after their operation: you just don't have the movement available in your shoulder and arm to get into the unique position required for radio. Me? I did it 3 weeks after. It was agony. I truly didn't know if my cut up body would allow my arm and shoulder to rotate backwards and hold for an hour. It did. I can honestly say I was drained afterwards.

But I did myself a favour. My movement since has been improved no end. It is almost as if the 'exercise' stretched the cut muscle out so I could get more normal movement back again. I can even sleep almost on my side again, although it still feels a little odd.

Indeed, I feel a whole lot better all over. The scars are healing nicely, the tissue is less hard and I would say I have 80% movement back. This is pretty good at this stage according to the nurse.

I keep telling myself it is nearly all over. One more lot of treatment to go and then I will be truly cancer-free. Apparently...

Lost

Apologies for not signing in for a while. I haven't felt particularly like communicating at all lately. I think I needed to just step off the planet for a bit.

OK, so where am I up to?

Chemo - done. Surgery - done. Recovery from surgery - doing.

My margins are clear and Scouse got all of Colin out according to pathology. Malcom did indeed turn out to be a collective as he was not one, but five. However, they were all guard nodes according to breast nurse.

The tit bit of the operation was a cinch. I have not felt any pain/soreness in this location at all. Indeed, once I was brave enough to take a look at said tit I was quite truly amazed at the beauty of the job. I have a one inch scar and that's it. And, more amazingly, Scouse just cut around the right side (as you look at it) of the nipple and removed Colin like that. As it heals, there will be no real scarring, as it is on the nipple line. You'd be hard pushed to know, I think.

I am not sure if Scouse jigged tissue around, but there is no real 'dip' either. I do know that Colin turned out to be smaller than Scouse thought. Perhaps that is why it looks ok at this point? I also realise radiotherapy might distort all of this.

My faith in Scouse as an excellent breast onco-surgeon was justified. It is a neat job and I am very grateful. It could have been a whole lot worse...

The lymph bit I underestimated on many levels. I suppose we women are so concerned with the tit we don't really take in the whole lymph part. I have a six inch wound under my arm along the top of what we be the bra line, if you had one on. They cut through muscle and nerve tissue to get to Malcom et al in my armpit. This has left the top of my right arm numb, tingly and painful and, as the muscle were cut, sore and with limited movement of both arm and shoulder.

It is better than it was and I suppose it will get better with time, but boy was I not expecting it to be like this.

OK, everyone said it would take time. I got that. But not the whole 'you will feel crippled by it' thing. And it isn't a matter of days or weeks, it is obviously going to be a few months.

I hate it. I hate not being able to make simple movements without pulling at the stitches and causing myself pain and discomfort. Even getting out of the bath is hard and I am too afraid to sit in it in case I can't get myself out (pushing down causes a lot of pain in my armpit), thus I am still kneeling! I am better at getting things over my head than I was, but I still find it difficult to put a bra on in the normal way. My wound will not allow that much movement behind me yet.

I am doing the exercises. They help. They also make me feel more like a cripple. And the stiffness and discomfort is far worse in the afternoons/evenings. Trying to get comfortable is hard then, lying down brings pain, thus I am still lying on my back with three pillows. I am getting better at lying on my side, but I find it too uncomfortable to do this properly yet as the wound site bulges and feels like it is going to pop.

I tell you, there are many forms of torture. For me, sleeping on my back is one of them. I wake up wanting to move onto my side and know I can't. It truly is torturous for someone who has never slept on their back. Forget waterboarding and sensory deprivation as a form of torture; just tell the CIA to make their prisoners sleep on their backs. It drives you crazy...

The other thing I hate is to do with the numbness in my arm. If you have ever slept on an arm and woken up with severe pins and needles or even with a 'dead' arm, you'll know what I am talking about. When I put my arm to my side, the numb side touches the wound site. And the wound site feels like an elephant under my arm. Like a small country is nestling under there. It isn't, of course, but the lack of proper feeling under the arm and in the armpit makes it feel like that. Hopefully, the feeling will return as the weeks and months go past. Some women experience this permanently. I hope I don't. I get a lot of tingling and shooting pains up and down my arm and I think that is a good sign...

So there you go. Tit good and the exit site of Malcom not great. But getting better...

Scouse said I couldn't drive for two weeks. I didn't. I drove at two weeks and one day. I can't say I will be entering a rally at any point soon, but simple driving for short distances is ok. I could do an emergency stop if I needed to, which is the measure of being fit to drive post-operation apparently.

You know I said I don't look like 'me' anymore? Well now I don't even 'feel' like 'me' anymore too. I have always been incredibly fit and strong with a good sense of kinesthetic awareness. Now, I am a bald, bloated cripple.

This isn't easy, folks. I should feel some sense of relief that I am two thirds of the way through the treatment plan with only radiotherapy left to accomplish and Colin gone. What I feel is insignificant and vulnerable, as if everything I once was is disappearing bit by bit. And I think it is going to get a lot worse as the next few months go by.

What will be left of me come the Autumn if I go looking for myself?

"I can't find myself" Robert Smith - Lost

Dancing Queen

So it has been a week.

Colin and Malcom have officially left the building, though I am now in limbo awaiting the pathology results. Bits of Colin may have been left behind and I may need to go through the process again...

I hope not.

It wasn't hell, as such. I wouldn't recommend it to anyone as a jolly way to spend 24 hours.

OK. The (Elizabeth) Hurley ward and the staff were great. I would happily give them 10 out of 10. Friendly, caring staff and the ward was immaculate. I even got my own television. This was a good thing. I slept no more than a few hours a night and I watched a lot of Dave re-runs of Have I Got News For You and Mock the Week. At 3am.

But you don't want to know about that bit, do you? You want to know what having your tit cut into is like, don't you?

I went to the hospital at 7.30am. I didn't eat after 2.30am and didn't drink after 6.30am, as instructed. Best Friend dropped me at the door, as instructed, and I went up on my own.

Anxiety levels were under control. I decided to knuckle down, grit my teeth and get on with it. Oh, without biting anyone's head off.

I was shown to a bed and told 'people' would be coming to speak to me over the coming hour.

First up was Scouse and his entourage. He looked pleased to see me, seeing as I told him I was likely to be in Mexico. "There is still time to get to Heathrow" I told him.

There were a number of mundane questions I wanted to ask him about after care;

'The breast care nurses should have told you these things' he said.

'But I haven't heard from the breast care nurses' I replied.

He looked quizzed. He looked at the Registrar.

He then marked me up with a pen all over my boob, hesitating slightly at times and letting air out of his mouth through his teeth.

'You look like a plumber sizing up a job and about to tell me it is complicated and costly' I said.

'Just deciding how to do it' he replied.

Shit. I thought he knew what he was doing.

Off he went, after making me sign my consent form.

Next was the anesthetist. I told her about my fear of anesthetic and surgery blah blah. How I wished I was in Mexico and how hard it was for me to not run away.

'Oh we will take good care of you' she said. And then she was gone.

Next was the breast care nurse.

'Now' she said, 'we have been trying to get hold of you'.

'I'm sorry?' I replied.

'For your pre-operative appointment. This is where we discuss what happens, after care and so forth. But we couldn't get hold of you'.

What the fuck? No one has called me. No missed calls, no answer machine messages either on mobile or home telephone.

This is not the first time this has happened. How many times have the breast care nurses 'not got hold of me'???

'Well', I said carefully, 'I think you must be ringing someone else because no one from this hospital has called me in months'.

'Oh well' she said.

Bollocks to 'oh well'. That sums up the breast care nurses of the RBH to me. Useless.

Off she went.

Then I was alone. For 4 hours. I listened to the other women about to be operated on crying behind closed curtains as they said goodbye to their partners and their breasts. I read, read, read. I tried to tune out the sounds of their misery and fear in an attempt to keep myself seated and not calling a cab to Heathrow.

A few times, I felt a tear prick my eye and a welling up of fear and irrationality. Somehow I swallowed it down and kept reading.

Just after noon, I got up. I picked up my bag and took a few steps to leave. I wasn't doing this, not today, no thank you, I am outta here.

I sat back down and texted Best Friend. 'I am coming home now, thank you very much'. It was my way of trying to calm myself down.

Next thing, a woman called Dilys came in and said she was taking me down to theatre.

I swallowed hard. I couldn't breathe. But I steeled myself. I began to float a little. I could feel my rational brain attempting to cut itself off from my body.

A 5 minute walk and we were there. I sat on a bed in a little room with double doors in front of me. I saw the anesthetist and she said again 'we will look after you'.

I then realised I could hear music. Some crap boyband-style pop. And I could hear laughing and people talking about what they were doing that night and at the weekend, where they were going on holiday.

The double doors opened and there, in front of me and not 15 feet away was the woman who had been crying in the bed next to me earlier that morning. She was on a high operating table, her head turned towards me out cold with a tube hanging out her mouth. Around her were 5 or 6 men and women in green scrubs, laughing and talking.

And they were cutting her tit off.

In front of me.

The door closed.

I could not believe I had just seen that. I know I was in a surreal place but surely I didn't just see that.

I would like to tell you that I spent 45 minutes in that small room. 45 minutes. And I had to listen to those healthcare professionals laughing and talking and listening to fucking bloody ABBA. Dancing Queen. That's what I remember. Fucking Dancing Queen. And all that time they were cutting a woman's tit off.

Her name was Jacky. She had a full mastectomy and her lymph glands removed. I know this because I saw her the next day of the ward.

I didn't tell her I saw her operation a dozen times over a 45 minute period. I didn't tell her they were laughing and talking about their weekends and holidays whilst they made the unkindest cut of all. I didn't think she needed to know this.

Thing is, I know they laughed and sang their way through ABBA's Greatest Hits when they cut into me. And that they talked about their weekends. And they laughed.

I know this because an elderly lady called Margaret, full mastectomy and lymph removal, came and found me the next day.

'I saw it all, dear' she said with her hand on mine, 'I had to wait 20 minutes and I saw you'.

I was dumbstruck. I actually wished she hadn't told me. It made me feel like a piece of meat on a table. Unimportant. I am glad I didn't tell Jacky.

'I am going to complain, dear' she said, 'we shouldn't have been made to see or hear that before they operated on us'.

No shit, Sherlock. I am appalled. How unprofessional. What terrible practice.

I know surgical teams listen to music. I have watched Holby City. But no way, no way should any patient be exposed to this and they certainly should not watch another patient being operated on.

So yes, I had a general anesthetic. I wasn't aware of what they did to me at the time they did it. But all my fears of my dignity being taken away, being vulnerable and not being part of what they did to me were proved true. I am appalled. Truly.

So I am going to write a letter to the Chief Executive of the Trust. It will be a good letter, I can assure you.

Anyway, I shall add to this tomorrow. Movement of my right arm and shoulder is somewhat restricted, due to the hole and long red line under it...