Thank you and goodnight...

I am cooked.

Radiotherapy is over. The treatment is over.

I started this blog back in March and it was my intention to use it as a personal history of the treatment (always worth knowing which day X happened or Y said something), as well as leaving something behind in cyberspace for posterity. Colin and Malcom may be dead, but they live on via this blog, just as their legacy to me is hanging over my head.

What happens now? Well, I see House and Scouse in November as a post-radio follow-up; any long term side effects will be apparent then. In March I will have a mammogram on both breasts to check for relapse...and every March after that for a long, long time. Anything dodgy turns up, they'll know pretty darn quick. Of course, I do have to pop a pill every day for the next 5 years to stop that pesky female hormone oestrogen talking to the receptive cells in my breasts...

So bring on the continued slam-in-the-wall menopause, the increased risk of womb cancer and, I suppose, the increased risk of cancer generally. Someone told me 99% of all people who survive initial cancer will go on and actually die from cancer. Obviously, it may not be for many decades, but once your ticket is punched, your ticket is punched.

Me? I have always believed I would die by the age of 50 (I am sure I wrote that somewhere in this blog and the reasons why???). I do not believe I will make old bones and never have. This confirms my belief. I still think I will be dead by 50 and now I just realise it will probably be from cancer. Hey ho, could be worse...

...you know, if cancer is the way you are going to go, it's not so bad; better cancer than a car crash or axe murderer. Time to organise yourself. Time to organise the end of your life. Time to reconcile, time to say 'seeya' to those you know and love.

People have called me pragmatic, chilled, matter-of-fact. I think my blog shows some of this, but if you have read it all the way through you will see I had my moments of fear and stress. Not a lot mind you...

It's not all negatives either. You can learn a lot from having cancer and a threatened early death. I have learnt to chill more, appreciate friendships, know that you can't always do what you want, when you want...

Most of all, I have learnt about myself. I am a bloody strong person, stronger than I ever imagined. I know what my coping mechanisms are and how I arrived at them. I know a lot more about myself than I did pre-Colin, believe me.

One of the things I have been doing over the last week or so is looking at my regrets. Bollocks to people who say 'you should never regret'. Everyone regrets. There are 'key' moments in my life where I wished I had taken an alternative path...don't you lot look at this and say anything...you lot don't have the focus I do! If I said 'you are going to die, what would you have done differently in your life' you could look over your life and say 'oh yeah, such and such' but that sword isn't over your head.It's make believe. It is over mine. And I so wish I had done some things differently.

I have regrets. Learning to accept them is what I have to do now.

It's funny, you'd think I would be full of 'joy' that I have finished treatment, that every day is precious and I should seize life and wring as much out of it as possible. You know how people who have had a serious brush with mortality do the things they have always put off? Yet I don't entirely feel like that. Some of the things I really want to do could take years, and I might not have years left and so I don't actually want to start something I might not finish. Not sure. Bit up in the air right now...

...I know of a woman who went through all the treatment I did. That was two years ago. This week, she has found out that she has cancer in her liver. She has secondary breast cancer. You don't come back from secondary cancer very often. It's just a little reminder that there is no such thing as an 'all clear'. I can't say I am clear of cancer. I hope I am, but there are no definites when it comes to breast cancer. Perhaps that is why I am not full of joy?

I am, this minute, stripped down. I am a bare essential human being. Every thing I was before cancer seems either gone or different. I can't be entirely sure which bits will come back or which bits are changed forever. Kylie said something similar in interviews post-treatment. I getcha, Kylie.

Some fucking hair would be nice, though.

Thank you and goodnight.

RadioGaga

What can I say? Radiotherapy is very boring.

I am 3 down and 15 to go. I have to drive an approximate 45 mile round trip to get there and back, day in day out. I think of it as a 'job'; I commute in and I commute out.

I have cancer 'fatigue' now. I am bored of having treatment, I am bored of having no hair, I am bored of the whole thing. That sounds flippant, I know, but I have given most of this year up to having the bloody cancer and I am on the last bit of the treatment journey now.

I think it is probably the reason why I don't check in on the blog very often too? There isn't that much to say really. Oh, apart from the process of having radiotherapy that is; you are a body and a piece of meat being irradiated with protons and glance rays. You lay on the board under the machines, the nurses poke, prod and move your torso around and measure you with lasers along your little tattoo lines to make sure the rays only get to the tumour beds and surrounding area.

To be honest, it is magic. You don't see or feel anything yet the protons are going in to the defined area and killing any stray cells left over from chemo and surgery. Hopefully, there aren't any but by having radio you reduce the chances of the cancer coming back in those areas by 40% or something. You have to do it. You'd be a fool not to!

Status report:

Fuzzy hair on head. Not enough to not cover it up yet but hopefully, in a month or so. there will be enough to say I am Sinead's twin again.

Bloody hair on legs and underarms again! One positive thing about chemo is the lack of body hair...saved a fortune on waxing and razors this last 6 months.

Still carrying a stone of chemo-gained weight. I would very much like to start exercising and dieting it off, but can't due to the nature of radiotherapy; you need to stay the same weight so the measurements of your body are the same for irradiation area. Poo. Best Friend says she has also put on a stone the last 6 months. She says it is 'sympathy weight' with me...

Scars are good. Radio may blow them up and cause lumps and bumps in them. Hope not. Mind you radio in itself can cause cancer and long term side effects. I am, after all, being irradiated.

Movement in right arm and shoulder at about 90% normal. I think. It is stiffer in the evenings, but I am now sleeping on my side again. Hurruh!

Headwise ok. Still counting myself 'lucky'. Lucky that I caught it early; lucky that I have not overly suffered; lucky that there is a good chance that I will survive 2010. People think I am 'odd' when I say I am 'lucky', but I am. I must have come into contact with other cancer patients who won't survive 2010...

I have to move in 3-4 weeks time. Most of the docs and nurses told me 'you can't' when I said I had to move staright after radiotherapy. 'Can't'? They think I am physically incapable. Me? Physically incapable? Pah, I am not stupid but I am already doing the stuff I was doing pre-surgery. Might not be weight training, but perfectly capable of packing boxes!

I suppose I am coming to the end of this blog soon. I never intended it to be anything more than a journal of my experiences, thoughts and feelings for the treatment journey. Something to stand out there in cyberspace that perhaps another person on the same journey might discover and laugh/cry at. I might, just might, read it all back in a few weeks before I sign off for good.

'To get through the hardest journey one only has to take one step at a time, but one must keep on stepping' - Chinese Proverb

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...

Au revoir Colin and Malcom

So today is the day before.

I have worked this morning and this afternoon I need to pack my bags. I say bags, because I need one for the (Elizabeth) Hurley ward at the RB and one for Best Friend's house...

I don't know how long I stay in for. Makes packing harder. I mean, it's not like packing for a weekend at Babbington House, is it? I don't know how long and somehow, one thinks jeans and cowboy boots aren't de rigueur for the RB. Front opening things, seeing as I won't be able to lift my arm above my head for a good few days due to Malcom's exit.

Books. Lots of books. Reading is what I retreat into when dissociating. I will read, read, read. Pulp fiction will save the day and my mind.

Am I nervous? Not sure. I just want to get on with it. Bit like chemo, I can't spend any more time thinking about it, I need to just do it. Small children and old ladies have operations, and, just like Kylie I can do it too. I think.

There is one thing I want to say though. I have had so many emails and phone calls from friends saying 'once you get through this and then radiotherapy you can concentrate on getting better'.

'Better'?

I am not ill. I am having treatment to prevent me getting ill. I do not need to get better from cancer because cancer hasn't made me ill. Let's be honest, not even chemo made me particularly poorly, save that silly rash.

I need to 'heal' from where they cut me. That's all. Then radiotherapy will take up my time and, perhaps, make my skin a little sore at the very worst. Then again, I have met three women lately who had just finished radio and they all said it didn't affect them at all.

I hope I am the same.

So, once I am through this surgery and once I am through radio I don't need to get 'better'. I need to get on with life.

Oh, and get a job and somewhere to live.

Life huh? It has a funny way of knocking you sideways sometimes...

So long, farewell, auf Wiedersehen, adieu...


“When things go wrong, you'll find they usually go on getting worse for some time; but when things once start going right they often go on getting better and better.” CS Lewis

State of the Union Address Part 2

So, here I am just 3 short days away from surgery.

I have no idea whether the hypnotherapy did anything at all, but I do know all the thinking I have been doing...trying to figure out why I have had such a problem with the thought of it all...has been very helpful.

Yeah, there's the control thing. That's easy to work out. And, of course, no one wants to have this kind of elective surgery, do they? Ladies out there, how would you like your tit cut into and your armpit massacred to take out your lymphs? Thought not. It isn't something you'd choose to have done, is it?

But for me, it's much bigger than that.

I am vulnerable. I don't do vulnerable well.

I rely on myself, and only myself. There is no one else. I do everything. I earn money. I pay my way. I pay my daughter's way. There is no family. There are no parents or brothers or sisters. There is no husband or partner (been single a year).

There is just me.

And if I am not on the ball. If I am not 100%. If I am laid low. Then what?

That's my problem. That and I can't completely dissociate from this. But I am trying!

I hate accepting help. I don't like being vulnerable. I am not much of a taker.

Example: putting down 'next of kin' and having to tell the hospital I have somewhere to go for the time I am laid low. Best Friend is a star. And I hate accepting help. I, of course, would be there like a shot if she were in my position. But accepting help from her is difficult for me.

I have already told Best Friend to just drop me at the hospital door. I will find my way to the ward. I don't want visitors. I don't want people to see me vulnerable. Not even Best Friend.

'I'll text you to let you know I am alive' I told her.

Cue Best Friend 'pouty face'.

I feel like a rabbit caught in headlights. I don't want to be. I want to be more like the rabbit in Banks' The Wasp Factory...

This is now something I have to power through. I have to think of it as a hell like state for a short amount of time and get through it. Feel the fear and just do it anyway, as someone recently said to me.

Somehow, I am sure it will all be just fine. Perhaps the hypnotherapy has helped after all...

State of the Union Address Part 1

Well, here I am. Another bad night. I still don't sleep well and really haven't ever since I started Taxotereshit. Remember? I never had a problem sleeping before I started that particular drug...

...indeed, I think it I can honestly say I haven't slept more than about 2 hours in one go for months now. No, not in pain or feeling poorly. I just toss and turn a lot and look at the clock.

For instance, last night I went to bed at 11pm. I felt tired. I didn't fall asleep until 12 and then saw 2am, tossed and turned, saw 4am, tossed and turned and then by 5.35am I was awake for good. Do I feel tired? No, not at all but I will want to go to bed earlier tonight to make up for the lack of sleep I have already suffered. And then I will be awake in the early morning again.

Weirdly, I don't look tired...

Perhaps they should add 'will fuck up your sleep' to the side effects list. Along with 'will cover you in a red, sore rash'?

Anyway, purpose of this entry is to report the condition of my cancer-struck body and then, later outline my plans over the next month or so, rather like the US President does to Congress. Well, I think that is what the State of the Union address is...

As of now the chemotherapy is pretty much out of my body. I imagine it has left some significant changes and some of these might last a while?

My skin is so much better and I realise a lot of it was the Taxotere. I hope this will diminish over the weeks...

...my sleep patterns have been altered. Drugs don't help, unless they want to give me an elephant tranqualiser?

My hair is actually coming back a bit. A very light growth can be seen sprouting from my head. I imagine this will take a good 3 months to form anything near a short crew cut again. I have been told once it starts, it goes mad and grows quickly. Sinead and me will look alike again.

My eyebrows pretty much survived the chemo! Those buggers might need taming again at some point once things start to grow.

I did lose about half my eyelashes.

Hair is growing, very slightly, back under my arms. Bastard. It was rather nice being completely hairless under there!

Didn't lose all the bikini either. But it looks very tidy...

I have put on about 5kgs. I knew I would! I have been eating whatever I want and not going to the gym. What more can I say? More calories have been going in than going out, so I have got fat. Now a 14 and not a 12. Lucky I am tall. Diet and exercise starting as soon as...

The most significant change to myself, post-chemo, is my head. I have had one hell of a steep learning curve, but I think I have learnt a lot about myself. Particularly my coping mechanisms and how I deal with the slings and arrows of outrageous fortune. Personally, I wouldn't recommend getting cancer to find out more about yourself, people. I recommend a good therapist.

Part 2 later.

Better but disappearing...

Finally, the chemo is out of my system and I feel so much better. As does the skin.

It is obvious to me now that much of the skin problem was not psoriasis, rather it was the now infamous Taxotere 'skin rash'.

My hands are no longer red, nor are my arms and actually, my whole body is so much better. Yes, there is some psoriasis but a lot of what I thought was psoriasis was the rash. It has gone oddly purple in colour and is calm.

I have more energy too. Well, it isn't easy to have energy when every time you move your skin hurts.

Hey, I had a letter from the RB at the end of last week. This is the first letter I have ever received from them. It was an 'event'.

Now, don't get your hopes up that, suddenly, the RB has turned a corner...

...the name on the envelope was mine. It was addressed to me. That was about as accurate as it got.

The letter contents were obviously meant for another poor patient about to have surgery.

And not for breast cancer.

First off, it said I had my operation on 'Wednesday 30th July'. That was my first clue. Something wasn't right with that...

...second clue was the consultant's name. Who the fuck is 'Mr Magee' I wonder? And do I need a 'vascular operation'?

Yes, you've got it in one. Right with my name, wrong about everything else.

Does this mean someone else will turn up for my operation and not turn up for theirs??? Worse, will they realise Wednesday 30th July doesn't exist this year???

If I wasn't smirking so much, I would be crying. Honestly, do I trust this hospital to actually operate on me???

I rang, got an apology and am waiting for the correct information in a new letter.

Last week I saw the hypnotherapist. I have another appointment this evening. How do I think it went? No idea. If you are having hypnotherapy for cessation of smoking or help with arachnophobia, at least you can test its effectiveness.

Anyway, nice chap. We spoke about lots of things so he could get a handle on me. Apparently, I am 'different'.

When asked specifically why I thought I was afraid, I told him my belief. I dissociate. This is my coping mechanism with some of the traumatic things I have been through, particularly as a child. Dissociation allows me to function in difficult times. There have been a few occasions when this hasn't worked for me; then it is flight or fight. I tend to run to be honest...

This whole cancer surgery thing is difficult to dissociate from. It is on too many levels; physical, mental and psychological. Thus, I feel the need to run or fight. As I have said before. But this isn't possible. Well, it is but it may cause a few problems down the line (death or arrest). I also need control and I am also a highly private person. All of this is about to be invaded...

All these things are quite a lot for anyone to take in. And I am burning a whole lot of energy and exhibiting anxiety because of it.

I am open minded. Indeed, I do believe hypnotism works...but as I have never been hypnotised, I am not sure how well it works on me.

There was a lot of relaxing and counting. He told me I wouldn't be able to open my eyes on the number 8. I was thinking 'yes I can, but I won't because I don't want to offend you'. Then I told myself off for being negative. Then I was asked to count down from 100 out loud. I felt foolish and told him so. So I counted in my head. All the way down to zero, which he said afterwards I shouldn't have done!

But, that was my conscious mind. He wasn't talking to that part of me, he was talking to my unconscious. And I hope it listened. He did say I can be partially hypnotised, which is comforting, but not entirely. However, we are going to have another go tonight...

How do I feel about the surgery now? Not sure. My whole life feels like it isn't mine anymore. I am not me. I think I said that 4 months ago in this blog, but I feel even less like me now. Everything that is me seems to be disappearing...it is like this is happening to someone else. I will wake up and this will all be a dream.

This whole thing is surreal. And I am disappearing into it.

Countdown

I suppose the fact that I haven't written very much over the last few weeks pretty much sums up how I have been feeling lately.

I truly haven't been poorly from the chemo, rather the skin thing has really been a downer.

That's an understatement actually.

My life, over the last 10 days, has been so utterly awful I cannot express how miserable I have been.

Obviously, the physical pain has been all consuming. This has passed a little. I am no longer bright red. But it still hurts and I haven't slept properly in this time. It hasn't so much been getting from day to day, rather it has been lurching from hour to hour.

I find myself moisturising every hour or two, even through the night. How many times have I got up and dragged myself to the the pot of Doublebase moisturiser at 2am???

Psycho-emotionally, it has also been tough. Most women in my position suffer and deal with the side effects of chemotherapy and the on-coming surgery and radiotherapy. Hell, they just have to try and live with the fact they have cancer and what that means.

Me? I look at my body and see it 80% covered in a bright, sore red rash and I wonder if there is any point in living at all. No dealing with nausea, fatigue or worrying I might die from cancer. I would welcome death (if it isn't painful please).

Let me point out I am not depressed. Nor am I suicidal. No thinking about ropes over banisters here or driving my car at 90mph in to a large tree (I am all for Nembutal after sorting out my paperwork and putting everything in order...this takes time and planning). But I do feel despair because I am in constant pain. And I loathe what my body looks like. Bollocks to having no hair and going up a dress size; for me, it is the fact I look and feel like a leper. That my skin hurts. That I don't feel like a valid person anymore, let alone a woman. Fuck me, I don't have any hair and I look like shit!

They shoot horses when they get like me. Really. I have very little quality of life right now. I go into work and I put a false smile on my face and pretend everything is fine. Because I have to. Because work is all I have right now. There is no social life (I don't leave the house, unless going to Waitrose or to the hospital). I don't want people to see me looking like a bright red leper! Close friends understand...

And now I have to deal with the surgery.

Today I went to see Scouse. I like Scouse. I believe he is a caring healthcare professional. I take some comfort from this, particularly as my experience of the oncologists is they actually don't give much of a fuck.

'I apologise now' I said, 'I might burst into tears'.

Scouse looked at me. Then at my hands and wrists (the only part if my body showing, bar my face, which strangely isn't affected).

'It's your skin, isn't it?' he asked.

'Yes. I am in agony and life isn't so great right now'.

He looked sympathetic. I think he is a sensitive chap. I suppose you have to be in his line of work. He tells women they have cancer and that he is going to have to chop their tits off. I imagine he also has to tell women they are going to die too. It helps to be sympathetic.

We discussed my breast and Colin.

One thing I haven't written here because I haven't felt like writing, is that 1. I can't have immediate reconstruction if I have to have a mastectomy because I have to have radiotherapy and it is impossible to do radio on a reconstructed breast and 2. I can't have a delayed reconstruction in a years time because this is major surgery.

I am not a 50-70 year old woman (the average age for women to have breast cancer) who has a husband, a part-time job and the ability to have time off work to recover. Delayed breast reconstruction requires many operations over a year period. It requires up to a year off work in some cases. I am a single young woman who has no financial support from anyone. I have to work for a living. My home comes with my job and the kind of job I have does not allow for massive amounts of time off work. Indeed, the contracts I have had normally have a clause written in which says no more than a 'month' off sick. It's just the kind of job I have. And, remember, come the autumn I am going to have to look for a new job. No employer is going to employ someone who wants to take time off work for months and months at a time to have a breast built. Plus, of course, I am not going to mention in any interview that I have just had 6 months of treatment for cancer. I will remain jobless and homeless if I do...

I explained my situation to Scouse. He listened. He understood - the sign of a decent doc in my book.

'Well' he said, 'I am planning on a wide local excision at this point so let's not worry about being breastless at this point'.

I asked him about the cosmetic result for someone who needs to have half their breast scooped out. Originally, he was concerned that a WLE would leave my breast in a terrible state post-radiotherapy. Indeed, he thought a mastectomy would be preferable last March.

'I reckon I might be able to jig some of the breast tissue about to fill the gap'.

He groped my tit at this point.

'You know, I really think Colin has got smaller and the chemo is actually working...Colin is certainly softer than he was 3 weeks ago' said Scouse.

Great. The chemo is doing something but I can't have anymore because my reaction to the Taxoshit, skin-wise, makes it impossible.

He measured me from shoulder to nipple with a tape measure.

'I have to say, you have excellent nipple alignment'. Apparently my nipples are high on the breast and said breasts are well positioned for a woman of 41. I think he was trying to tell me I had great tits. Or I have now. I won't once he cuts half of one of them off...

Oh the irony.

It also means he has little room for movement with the 'jigging' of the breast. Volume displacement, the official word for 'jigging' involves cutting the nipple off, jigging the tissue about and then replacing the it. This is, essentially, what they do to women who have their breasts cosmetically reduced in size.

'I can't attach the nipple higher, as I normally would, because unlike many women of your age who have drooped breasts, your nipple and breasts are in a good position'.

Apparently, it is all going to be a bit of a challenge, particualarly as Colin, the little fuck, is very close to the nipple. It is going to make cutting him out and the margins needed to make sure the cancer is all gone, very difficult.

But not as difficult as the lymph surgery. Cutting out Malcom could cause permanent problems for me. Indeed, Scouse says the breast surgery is fine, but the lymph surgery may leave with me with a permanent disability - 20% of women who lose their lymph nodes are left with a dead arm. I will definately lose all the feeling between my shoulder and elbow, as they have to cut the nerves.

Oh it just gets better and better, doesn't it?

So, 30th July is 'chop off the tit' day. Followed by 3 days in hospital having lymph fluid drained out of my armpit, followed by 4 weeks of recovery if I don't need to have more surgery, because if Scouse doesn't get it all out, I have to go back under the knife. Then I might be breastless...

Tomorrow, I am seeing a hypnotherapist in an attempt to deal with my phobia of surgery and being knocked out.

If anyone has a spare glass of Nembutal going spare, drop me a line...

Heat

Well I don't really have much to add to the post from Wednesday.

Everything is pretty much the same.

I did go to the GP to pick up some more emollient. The lovely receptionist asked me how I was doing and it was all I could to do not to burst into tears!

'Not great' I said, 'all the usual side effects are perfectly managable, but I am not soing so well with the skin rash'.

I showed her my hands, wrists and forearms - all bright red.

'You must let a doctor see you' she said and off she went to find a doctor.

He took look one look at my hands and shuffled me off to a private room. I showed him my legs and he gasped out loud. This, I think, was a rather emotional outburst for such a reserved middle-aged man.

'You look like you have chemical burns' he said, 'the last time I saw something like this was when a man fell into a bath of paint stripper' he said, 'you must really be suffering'.

Oh yeah.

He offered me strong opioid painkillers when I explained how much it hurt. I said I would rather just take stronger codeine before I move on up to the heavy stuff. I must say, I was touched with his concern.

I am taking the stronger codeine, but it doesn't do much.

I just hope this begins to settle down as the Taxoshit leaves my system next week. This, combined with the heat, is killing me!

Lord, I sound like a right whinger and I am truly not one of those normally.

I do hope I have something more positive to post soon....

Pain, torture, agony.

I haven't checked in for a bit. This is mainly due to the fact I am feel so goddamn awful, the last thing I want to do is blog about it!

Usual Taxtereshit hit on Saturday, as I expected. Bit of bone pain, head feels like someone has filled it full of glue, mouth feels like it is full of stinging nettles. The usual suspects and I can handle them. Really. They pass after 4 days anyway and today I feel more like myself in respect of this stuff.

If only it was the usual suspects.

Remember how my skin flared really badly about 6 weeks ago? It is psoriasis. But now I realise a lot of it is the chemo drugs.

I am bright red. I look like I have suffered chemical burns over about 70% of my body. Indeed, my thighs, top of arms and back are probably 80% covered, with very little clear skin now.

It vibrates with heat. It hums with pain. I can honestly say it is as near to agony as I have ever felt (and I had a natural homebirth of a 10lb baby without drugs!).

Moving hurts. Sitting hurts. Laying down hurts. Being hurts.

My body feels likes a fat sausage in a frying pan, spitting and about to split open.

You can warm your hands on my body...just put them an inch above my skin and feel the heat. And yet I shake with cold now and then. This, I think, is as close to erythroderma as you can get. Mind you, no swelling. I am not quite that bad...

Try sleeping when you feel like this. I haven't slept for more than an hour in one go since the weekend. Being in bed is physical torture. Hell, trying to sit on the loo is agony!

What a mess I am. Really.

I know, from the last cycle, that I probably have another week or so of this. It will calm down, as it did last time. Indeed, the last week of the cycle (when the drugs are out of the system) it was just plain psoriasis. I never thought I would say psoriasis is glorious, but in comparison to this chemo-induced rash, it truly is. Take note, psoriasis sufferers: there is something far, far worse than psoriasis!

I am moisturising hourly; I am taking in plenty of fluids; I am taking in protein via eggs, as my appetite doesn't care for much more (apparently protein loss is part of erythrodermic psoriasis, so imagine it is with this).

I really don't know what else to do. I am not sure a doc could do anymore to be honest. I just have to wait for it to pass...

But I am close to tears most of the time. And for me to admit this is a big deal; I don't really do tears over pain. I have a huge capacity to deal with pain. But this? This is agony. Pure agony.

Who would have thought of all the things that would get me during chemo, it would be my skin? No vomiting, nausea, fatigue, stomach problems. No, a skin rash!

Anyway, no more chemo for me. Even if they were to tell me 'oh look, it is reducing the size of the tumour' I know I cannot go through this skin thing again another time. Really.

If the delete key on my keyboard could delete me and this pain, I would hit in a second....

Staying cool, calm and collected...

Today I had chemo. The chemo they weren't going to give me blah blah.

Yesterday I had my blood test to see if them there white blood cells have regenerated after the Taxoshit from 3 weeks ago.

I was the first patient in today. All I had to do was ask if my WBC was good-to-go at 9am and then I was first in the West Wing Cowshed for the chemo to be milked into me.

That was the plan...but this is Plaingoldband we are talking about here.

The fuckers 'lost' my blood test results. Yes, I dragged my sorry cancer-stricken ass to a nurse yesterday, had blood taken and sent to the RB Pathology lab and it got lost somewhere.

No blood test results = no chemo until more blood is taken.

So, at 9.15am I went up to the West Wing, explained the clinic nurse couldn't find bloods, asked if they would shove a cannula in early, take blood out of it, I would walk it to the other end of the hospital to Path Lab and then I would walk back and wait.

And wait.

And wait.

The bloods have to be checked. The results sent to West Wing. The oncologist has to ok them. Then the pharmacy will sort out the Taxoshit and send it up.

I waited in God's Waiting Room from 10am to 2pm. I saw other people come, have chemo and go.

Then I had my chemo. That took 2 hours, plus wash through.

I left with the nurses as they closed up the cowshed for the night.

I was there at 8.30am as the first patient, me being an eager beaver. I ended up being the last patient to receive treatment.

Yeah, I'll turn the lights off on myu wait out, guys.

Now, I was serene through this. You see it isn't the fault of the nurse Bernards. It isn't even the fault of Woolley Omar. It was the 'system'. The NHS that is not perfect.

But I spent over 10 hours (including travelling-to-hospital-time) to receive 2 hours of treatment.

Each Nursey gave me a hug and thanked me for my patience. I think most people kick up a stink if this happens, probably taking it out on them. Me? I don't like it, but it happens.

On the other hand, poor communication and being treated like a number by the oncologists is not ok by me.

See? I can discriminate in my railing. I don't just kick against all the pricks, particularly when it is not their fault. It was probably the fault of some snotty-nosed teenage undergraduate doing a summer job, who just happened to delete my blood test results off the system or something by mistake.

Hey, one thing I can report is I am now officially a bloody medical enigma! I am sure I wrote a long time back that chemo kills white blood cells in the bone marrow. It kills off the neutrophils first and without them, you are at risk of infection during the nadir, the lowest point before the bone marrow starts up again. You cannot have chemo if your WBC and neutros are not above 1.5. The more chemo you have, the less your bone marrow makes and many people find it hard to get enough after 3 weeks and often have to delay chemo until they have enough. Indeed, some need to have special injections to make emergency ones...this is why people get sick whilst having chemo.

I have had 5 cycles of chemo. By rights, my body is suffering right now. My neurophils should get lower and lower after each blood test, as the bome marrow is more and more suppressed.

From the very first blood test, back in April, my neutrophils have gone up.

Yesterday, my WBC and my neutrophil count was higher than when I started chemo. At 4.99, my neutrophil count is well within the boundaries of a normal healthy person, not a chemo-fried cancer patient. The nurses couldn't believe it at all, particularly as I was warned by this time I may have to have chemo delayed as my counts would go dangerously low...

I am either Popeye, or an alien. Obviously...

I should be so lucky, lucky lucky lucky....

It has been a very eventful few days. Well, I suppose you could say it has been a very eventful four months...

Where to start. Obviously, last week was a bit of a cock-up and I was frustrated and somewhat angry. Of course, the anger was really borne out of the fact there have been a litany of what I perceive to be cock-ups within the oncology dept of the RB. The odd cock-up is forgivable, but I feel I have been on the end of more than that and, as I received an apology for the very first one back in March when I 'fell through the crack' in relation to not being told about starting date for chemo, I think my frustration is bona fide.

If you have kept up with this blog, you are aware of all them. For those who skim it (naughty naughty), my frustration has not been with the actual treatment, which is excellent and second to none in the world, but with the organisation and, more importantly, the total lack of communication. The patient, it seems, is the last to know anything.

Last week was the last straw for me. The lack of oncologist to discuss chemo with when I was told there would be one within the meeting was the last straw for me. Having cancer is a pretty stressful situation for a person to be in; being kept out of the loop and being pushed from pillar to post doesn't really help much.

Actually, my experience is cancer is managable; I can handle cancer. I can't, however, handle being treated like I am not the most 'important' person in the menage a trois that is 'patient, surgeon and oncologist'. It has felt, to me, that I have no voice, no opinion and my feelings are of no importance. They seem to think the patient is not part of anything happening. Their actions confirm to me that they make their decisions (which I don't criticise and bow to their expertise and judgement) but don't discuss them with the patient. Indeed, there seems to me that they don't think discussion is relevant and, at its worse, that they don't need to convey information like 'you are not having anymore chemo' officially or 'this is your date for surgery'. I have to try and find out when!

It can be like trudging through treacle to know and understand anything that is happening.

Anyway, enough of my negativity. Let's talk about what seems like my monumental effort to sort this out has achieved.

Yesterday, I had a meeting with House. I was nervous. House if formidable. I am merely a patient. I knew what I wanted and I knew I had to be calm, yet assertive and articulate, yet polite to get it.

Imagine my surprise (not) when bloody Woolley Omar calls me in. He who answers no questions without fudging; he who tells me 'there will be a joint meeting' when there is not.

I took a deep breath. I thought of saying 'I was under the impression this meeting was with House'. I did not. I thought 'for fuck's sake, just do it woman'.

So I did.

For clarity and for ease of reporting here, I will split each part of this 40 minute meeting into subheadings:

1. No oncologist at meeting

I got an apology. Omar didn't understand why there was no oncologist available. There should have been. It was a 'joint meeting'. He understood the difficulty of being told by a surgeon 'no more chemo' when said surgeon does not have the ability to discuss why this clinical decision was made and what the consequences are.

2. My skin

I had a meeting with my derm last Friday. I was under the impression that part of the clinical decision to stop chemo was because of my worsening psoriasis. Silvano said 'they should contact me if they are making clinical decisions based on dermatology'. They have not. Indeed, they have not contacted Silvano at all, apart from the initial 'we want the patient to come off biological therapy for chemo' back in March. Silvano assured me that my skin should not be a factor in their clinical decision making. That it is his field and he will take care of me if my skin worsens to the point surgery might be difficult. He assures me it won't. I trust him completely.

Yes, said Omar, my skin was partially why they decided to halt my chemo. However, when I told him what Silvano said he acquiesced. He also admitted that the lack of communication with Silvano, as a whole, was probably not the correct way to handle the situation and he wasn't sure why no letters had been sent as a matter of course...

'Are there any other factors in your clinical reasoning for halting chemo' I asked. This takes me on to the next bit...

3. Colin the tumour, the little fuck

'Well' said Omar, 'ultrasound doesn't show a significant shrinkage of the tumour'.

'Does this mean Colin is chemo-resistant' I replied.

'Perhaps' said Omar.

'What about Scouse's clinical evaluation that actually, in his opinion, the tumour seems softer and that the chemo is actually having some effect, particularly as my ultrasound came very early in the cycle because of the timetabling of meetings?' I asked.

'Yes, Scouse has written this in his notes and, taking that with the early ultrasound and Silvano's directive perhaps we ought to give you another cycle of chemo...'.

'Perhaps' I continued, 'I could have another cycle of chemo and then Scouse could do another clincial grope of my tit in say two weeks and re-evaluate the situation then?' I continued.

'Yes, that would be a good way forward and, as your surgery is provisionally booked for 29th July, having one more cycle of chemo is possible and we could still keep that date if there is no difference in Colin and, if there is, perhaps we could do more chemo and then push the surgery date forwards'.

So surgery date is decided.

'Oh, do you not know the surgery date?' said Omar, with a look of surprise.

No, of course I bloody don't. You lot never tell the patient anything. I found out about my chemo date from a bloody text message. Hey, I bet I would have got another text message telling me 'Don't forget your life-saving operation to remove your right tit, which will have an enormous affect on your whole life @ the hospital in 29/07'!!!!!!!!!!!!!!!!!!!!!!

'No' I said calmly to Omar, 'but I know now'.

4. Second opinion on surgery

I have a friend. She just happens to be a nurse who works in a unit that carries out surgery on the breasts of women with breast cancer. I explained my options, as laid out by Scouse last week to her. She said it seems Berkshire PCT does not offer the 'full monty' of available surgery and reconstructions. Her PCT has both onco-surgeons and plastic surgeons. Perhaps we ought to get a second opinion, she said. I agree. But how do you go about this...

Said friend is finding out from her surgeon the options as he sees them with what she tells him. If there is a chance of an improved outcome I will try and organise a meeting with Mr Craven of the NEH PCT.

'I wish to get a second opinion with regards to surgery options' I said.

Omar looked surprised.

'Not.' I continued, 'because I do not trust the skills and judgement of Scouse, but because I think he is potentially bound by what this hospital can offer me'.

I explained, in detail, that there are other options available outside this hospital. Taking into conideration I cannot have my breast rebuilt at a later stage if I require full mastectomy (I will have to let you guys know all about this in another blog!), and that I have psoriasis (again, the significance of this I will go into another time) it might be pertinent to seek another opinion.

Omar understood and said to let him know asap so available notes can be sent to secondopinionMrCraven.

5. The importance (or unimportance) of Chemotherapy in Breast Cancer Type II

Feeling that the meeting was going well, or perhaps I should say that I felt I had some control of the situation and could get more information out of the lesser-spotted and rarely seen oncologist bird in its natural habitat of the RB cancer unit, I asked specific questions about the relevance of chemo and outcomes.

Turns out that some tumours are chemo-resistant. Sometimes it is not worth giving a patient chemo with my type of tumour. Yes, there is an increased risk of relapse and the re-occurance of breast cancer as a secondary, but the risk is approximately 10%. I cannot really claim to completely understand this statistic or where it comes from, but it seems to me that surgery and radiotherapy are the most important parts of cancer treatment for a person presenting like me. Chemo, used neo-adjuvantly (before surgery) is useful because it can shrink tumours (making for an easier surgery) but also because it can show whether chemo actually works. My thoughts that adjuvant chemo is a 'blunt intrument' and nothing more than a partial 'insurance policy' were correct. Some women have adjuvant chemo and it doesn't work, except no one knows it doesn't work because there is no mate of Colins left in them to measure it by. Boy, I am glad I had neo-adjuvant chemo. At least I know Colin is a fuck...many women go through gruelling chemo for nothing but never know it isn't working well.

'Taking all things into consideration' said Omar, 'adjuvant chemotherapy would probably be a waste of time with you'.

Lastly, I thanked Omar. I shook his hand and said 'Thank you, sir, for your time. It is much appreciated'. He looked relieved actually. It must have been gruelling for him to be pinned down. I am not sure they are used to it! But look at the result? I actually feel like I have been part of my treatment plans. I have made an oncologist change the treatment plan because I was able to point out 'we could try this and see what happens' and 'nothing ventured, nothing gained'. If I had said nothing and blindly did as they had said, I might not have got the potentially better treatment. Anything that makes Colin, the little fuck, smaller has to be better for my surgery options...

OK. Now I am going to hit you with the big mother of all eventful happenings of the last few days. I wasn't expecting it. It has been a bit of a shock and is going to change my life beyond cancer.

No, I am not pregnant.

I am being made redundant. I am going to be jobless and homeless come the end of October. I cannot and do not wish to say anymore on this. But it is very sad and no ones 'fault', it just 'is' and I have to deal with it.

Timelines of treatment should mean I am cancer-free by the end of October...

But hell, how unlucky can one woman be???

My old boss and I have a game. We like to outdo each other and see who has the worse life. So I get the text message from her saying 'car is broken down/fridge is broken/haven't got a birthday present for husband' and I reply with 'have you got cancer? No? So I beat you then...' and then we both laugh.

Cancer, jobless, homeless and titless and covered in psoriasis. People kill themselves everyday over lesser problems.

Me? I laugh at how ridiculously awful my life has become. It almost makes me feel like buying a lottery ticket because surely, surely, my luck deserves a break. A big one. I'd probably win and then find out I have lost the ticket....

“All of us have bad luck and good luck. The man who persists through the bad luck - who keeps right on going - is the man who is there when the good luck comes - and is ready to receive it.” - Robert Collier

Estados Unidos Mexicanos por favor...

Ok, a few days have gone by and I have had a good think about all that was said by Scouse on Tuesday, have done some research using an excellent book given to me by a Nursey Bernard and, perhaps more importantly, rationalised my initial feelings on the surgery.

First off, I have to say I have not thought about the surgery element of this whole cancer thing in any great depth. This is partly because chemo was up first and I needed to put my energies and brain matter into dealing with that and, I think, because I didn't really want to. It isn't that I haven't accepted this is going to happen. It was inevitable and definite. I knew this. I wanted to not confuse and stress myself out by taking on too much. Of course, the whole surgery thing was slightly up in the air because of the effects of chemo anyway...

One thing you all need to know is I am phobic of general anaesthesia. This isn't something that has come out of this situation. I have always had it. Always. And luckily, up to now, I have never had to have one! I have been fit and healthy all my life.

I have obviously thought a lot about this over the last few months. This is not a 'I don't like it' thing. This is a full blown 'I am going to leave the country long before my surgery date is up' phobia. This is a 'you come near me with any drugs that'll knock me out and I will get violent' phobia.

Totally illogical and completely irrational.

Best Friend said, when I told her, that she would lock me up and drag me there. I think, when I didn't smile and said 'I would not even be available for you to lock me up...I'll be in Mexico' she took me a little more seriously. When I asked her 'what would you do if I said you were going to be put in a closed box with spiders in a month's time' she realised that I am phobic. She is terrified of spiders. She gets it now.

I know it is not anything to do with fear of 'being awake and feeling pain' because they have screwed up. It is not fear of being poorly when I come round.

No, I know that it is because I want to be part of what is happening to me. It is my body, my tit. These people I don't know are going to violate me and I won't be able to do anything about it because I am not awake. That terrifies me. At its worst, it feels like 'rape'; something being done to me that I have no control over.

I have never passed out. I have never been knocked out. I do not know what it is like to be unconscious due to something more than natural sleep...

Of course, I can rationalise that these people are not 'raping' my breast. They do not intend to harm me anymore than they have to.

I think it is about a loss of control...

Aware that this is a problem, I have made an appointment with a qualified and registered hypnotherapist. I have to try and deal with this somehow and this seems a positive thing to do. I suppose I ought to also speak to Scouse when it is appropriate, not that I think he really cares all that much.

I have read that it is possible to do it the simpler WLE surgery under local, but no one likes to do it apparently. I have read a woman's account of mastectomy under local. She was also terrified of a general. She managed ok but the docs were puzzled as to why she would want be awake!

As to the actual surgery, I have my options and my gut reaction is to go for WLE with radiotherapy. This is what Scouse preferred when I asked him for his best advice, although he obviously pointed out he understood if I wished to have the full tit off too. I appreciate the risks of having to have second surgery and the consequences of this...

Now, I am going to say something that really is not PC. It is not sensitive and I apologise if I offend anyone. I do not wish to offend or upset.

I have now looked at real life pictures of mastectomy. I have purposefully not looked over the last 3 months because I was concerned I would have this reaction.

It is disgusting. It horrifies me. It offends me. It looks completely horrific.

Said it. I cannot express how much these pictures upset me.

It has finally hit me that I am going to be disfigured, whatever happens. No surgery on the breast, even with cosmetic surgery, can make it back to what it was. Even the most elaborate rebuilds cannot do this apparently...

...and I now realise that my right breast is fucked. Whatever happens.

Now, unlike the vast majority of women out there suffering like me I already have something that I perceive to be disfiguring, as you all know. At this moment in time, because of the severe rebound of my psoriasis my self esteem and my self worth are at floor level. Complete self-loathing. The thought of having to deal with this rebound and my right tit being fucked up? I am not entirely sure how much more I can take, psycho-emotionally. Add this to my fear of the general and I reckon Mexico might be an option. Who cares if I die because of it? Bring on the tequila and lets eat burrito and go out smiling, ladies and gentlemen.

At my lowest, I feel like it is all rather pointless. I will be worthless as a viable woman and human being because physically, I will be a mess. Do not think this as self-piteous. I actually believe I am not a moaner or whinger. I do not complain about my situation. I have not once said 'why me?' or 'what have I done to deserve this?'. I am aware there are a lot of people far worse off than me. I think I am rather courageous to write this. I imagine many people feel like this, but they do not open up and share the words with others. In fact, I am sure this is true.

But that is me in a bad minute. I swing a little at the moment. One hour I might feel like actually crying (something I truly have not done since this whole cancer shit) and one hour I just think 'it isn't so bad'.

I imagine this is normal behaviour. For me, anyway.

So there you go, Plaingoldband's thoughts at this moment in time. How lucky you are to see the innermost thoughts of a woman on the verge of booking a ticket to Mexico...

"Fear is a tyrant and a despot, more terrible than the rack, more potent than the snake." Edgar Wallace

What a cock-up.

Today was rather an anti-climax.

Actually, today was a complete and utter bloody cock-up if the truth be told.

Today was the day I was supposed to have a joint meeting with the oncologist (House or Chemical Ali) and surgeon (Scouse). This appointment was made for me by Omar, the woolley oncologist, on the day of my last chemo. It was to discuss all my options (chemo, surgery and radiotherapy) taking into consideration the results of my scan and the fact they are 'concerned' about my psoriasis.

Or so Omar the Woolley oncologist told me. Indeed, I distinctly remember, as Best Friend can confirm, asking him which oncologist would be in the meeting ('it won't be me' he said, 'perhaps House or Chemical Ali')

Crap.

First off, the clinic was running over an hour and half late. Or was it 2 hours? I lost the will to live by then...first hour was ok, but then it all became rather tedious and boring. You expect to wait, or so I have learnt over the last 3 months. But this was a very l o n g wait today,

Scouse came out, called my name. Best Friend and I duly followed him into a windowless room. And he went to find my notes.

He came back.

Alone.

No House. No Chemical Ali.

'We thought this was a joint meeting with yourself and the oncologist' we said.

Scouse looked blankly at me and then the Nursey Bernard.

'No, we are here to discuss your surgery' he said.

It was our turn to look rather blank. At each other. This was not what we had been expecting. I mean, we knew he would be there to discuss surgery options, but I didn't know what was happening with chemotherapy (Omar told me to make blood test and chemo appointment for next week as usual) and I need to discuss radiotherapy with the oncologist because of my skin. Scouse is a surgeon, not an oncologist.

'They have told you that they are halting chemotherapy, haven't they?' he asked.

Um, no. I haven't seen or heard from an oncologist since my last chemo. That was when an oncologist told me I was having this joint meeting. To discuss it. To discuss chemo. To discuss radio and everything else.

And this is what I told Scouse.

At this point, he looked at the Nursey Bernard and made a face. The kind of face that says 'what the fuck?. The kind of face that says 'this is a cock-up'. But with no words...

'Well I understand they are stopping your chemo because of your skin' he added.

Right. Thanks for that. Would have been nice to have heard this from the horse's mouth so to speak. To have had a discussion with an oncologist. To ask the perfectly reasonable question 'so have my chances of survival been reduced' or 'am I non-responsive or are my cancer cells resistant?'. To not have this information off a surgeon, who made it quite clear he can't answer any questions on anything but surgery.

When were they going to tell me then? By text message? I would have just gone next week for my normal chemotherapy if Scouse hadn't said 'You do know....'.

He said he would make an appointment to discuss all of this with an oncologist. Next week. Great. More time off work.

He ploughed on, clinically examining Colin (that's groping my tit to you) and telling me that actually, my tumour is nearer 5cm than the 1.4cm that the imaging showed. He was very good at explaining the difference; imaging is just one tool to try and get a handle on size and location. Groping is another, as is mammography. But until you get in that there breast, it is impoosible to know for certain what you are up against. Obviously, I haven't seen him since March 10th when he told me I had breast cancer. No one has discussed Colin with me other than to tell me the chemo hasn't significantly reduced him, so I learnt quite a lot from Scouse today.

I didn't have the opportunity to discuss the ductal carcinomas, the ones I read about in my notes. Oh well. It just seems to be one thing after another. I have partially lost the will to live, let alone take on the surgeon with regards to not telling me everything.

Anyway, depending on what my derm and the oncologist say with regards to my skin and radio, I have two choices. Wide local excision (partial mastectomy) or full mastectomy. I will also have to have all of my lymph nodes removed. That is absolute because one definately has cancer, they may be more and they never leave nodes behind if one is cancerous. That will be a 'Malcom has left the building' moment then...

Regardless of which surgery I have, standard protocol is to have radiotherapy. This is because it is the most effective way of killing any remaining cancer cells. This also means that if I end up with full mastectomy, I cannot have any rebuild for at least 6 months to a year afterwards. This is because radiotherapy can distort the new breast out of shape. And that means I would wake up with no right breast and have to live with it for a long, long time.

If I opt for WLE, there is a risk that I would need to have more surgery if pathology on the margin areas shows Scouse hasn't taken enough tissue away. There is also a risk that the second surgery would end up as full mastectomy if a lot of tissue needs to be taken and the remaining area isn't viable. If this happens, I end up with no breast for 6-12 months again. This is the risk you take in trying to preserve the breast with initial WLE.

I haven't thought about this in any great depth. I will. I will rationalise my feelings on this over the next few days.

Right now, I am still fuming at the total incompetence of the RB's Oncology department...

Dogwankingfucksticksbunchofimcompetentfools.

The Drugs Don't Work (Part Three)

I had my ultrasound today to see if Colin has got smaller.

If you remember, he hadn't last time. That is because I was non-responsive to my first lot of chemo (FEC) and my cancer was resistant to it.

I am also non-responsive to Taxotere and my cancer is resistant to that one too.

Colin has not shrunk at all, meaning my cancer cells just laugh in the face of Taxotere. They have stuck their cancery middle finger up to it. They have blown a raspberry to anything some oncologist thinks ought to work.

I am beginning to realise that this has all got terribly complicated and all very negative.

To be non-responsive to chemotherapy is just not cool. My chances of actually dying of cancer have increased...

It also means radical mastectomy and complete clearance of my lymph nodes (even though only one, Malcom, actually looks dodgy). The reason for this? I can't have rasiotherapy post-surgery because of my psoriasis. Apparently. I have read about this but a nurse I met (who has a mum with psoriasis) said it too. Radiotherapy causes a skin reaction and anyone with a skin disease is more at risk. It is not recommended to anyone with severe psoriasis.

So not only are my chances of relapse higher because the chemo has failed, they are also higher because I can't, apparently, have radiotherapy too.

However, I am sure this will all be confirmed on Tuesday when I see House and Scouse...

Pillarboxredheadedgoddess came with me to the hospital for my ultrasound. Except she is no longer pillarboxredheadedgoddess, she is ravenblackheadedgoddess because she has gone all gothlike in the hair colour department. She finished uni on Wednesday and came up by train to stay for a few days; I haven't seen her since Mother's Day. I was pretty chipper post-ultrasound. For her sake. I didn't not tell her the truth, but I did it in my usual Plaingoldband chipper way. I didn't want her to get upset...and she did a reasonable act of not being so. But she is.

What can I say? It's not great news. My chances of survival at five years have decreased I imagine (five years seems to be the 'magic' number; still alive at five years, more likely to live another).

I do not regret having neo-adjuvant chemo. If I hadn't, I would never have known the chemo didn't work, as there would have been no Colin to measure its efficacy by. How may women, I wonder, have surgery first and then have adjuvant chemo and think it is all a-ok, only to find they have secondary cancer in their liver/bones/lungs a few years later. At least, if I find Colin's babies in my liver/lungs/bones it won't be a total shock, will it?

I suppose the only thing I could possibly regret at the moment is having chemo at all. I shouldn't have had it. I should have had surgery then radio. I wouldn't have my psoriasis and I wouldn't have been any the worse off than I am now!

I shall sleep upon it and report back tomorrow...

Marmite experiment.

Well the side effects from last week are still apparent.

Mainly the hand thing. Weirdly, they turned bright red a few days ago. They looked and felt like they had been placed in boiling water. Very sore. The skin stopped coming off, but now it is back. So now they are red and exfoliating madly. They look absolutely awful. Awful. I looked up Taxotere/skin rash on Google and did indeed find a few images of what is on my hands. I am moisturising hourly, which makes them comfortable for a few minutes after the initial sting, but they start to exfoliate again soon after.

Mouth is better, but still no real sense of taste. Last night I ate a spoonful ofMarmite, right from the jar, just to see what my mouth thought it was. It didn't think it was anything. I couldn't really taste it. Marmite?!? That stuff is toxic!

Bones are ok and they were better by Monday, which I thought they would be. Tummy has been a little sore too. I imagine I am on the tail end of the worst it now.

All the above I can handle I suppose. I haven't felt 100% this week. I know Taxotere must be heavy duty if I have this level of side effects! But again, I am not complaining. I have still been able to work and, as it is Royal Ascot this week, there has been plenty to do, although I am glad most of my work associated with the biggest and grandest racing week in the world racing calender has already been done and I have had a reasonably easy time of it.

But the real news is my skin. Psoriasis has gone bananas and I am in a lot of pain, as well as looking terrible. Lucky I am not a posh bird and was not supposed to attend; imagine, all those beautifully turned out people in their beautiful clothes and hats and then me, with my boiled red hands and a bald head?!

I would think those of you who don't know anything about psoriasis think of it as a bit of dry skin, mainly on elbows and knees or perhaps the scalp.

I wish I was a mild sufferer. Right now I have about 40% coverage, but it is flaring, hot and incredibly sore. My clothes rub me raw. It hurts to sit down. It hurts to lay down. Sleep is difficult. I wake and find blood on my bed linen. My skin feels like it has had acid thrown over it. Every time I risk looking at my body, I see more psoriasis...

The physical side effects of psoriasis can be terrible, but believe me when I say the psycho-emotional ones are far worse.

Yes, there is a lot of self-loathing and low self-esteem at Plaingoldband Towers at the moment. Enough said on that, I think. Although I will say I am trying to put a brave face on it, as most psoriasis sufferers do. Few of us let people know how much we are really suffering. It is a very personal thing, psoriasis. I am trying to be chipper when I have to see people, although I am not seeing many on purpose. I don't feel like seeing people. But the truth is, I am not feeling very chipper. I am not my normal, happy-go-lucky, positive self. But if you met me right now, I would smile and crack a joke or two, tell you how it is 'ok' and how I am keeping it all going. That is what I do, even when I am dying on the inside. I am a bloody good actress...

Anyway, I think it is possible that even if the Taxotere is working, I will not be able to have anymore. I cannot imagine I will be fit enough with my skin like this and getting worse by the day, plus they were talking about early surgery anyway because they were 'concerned' my skin would prevent it. Bit late now. I think worst case scenario is going to happen and I might be too sick for surgery, if the psoriasis keeps going unabated. Next stage is erythroderma...

I also think radiotherapy would be impossible with such bad psoriasis. I understand it can make the skin sore. My skin is already sore. I cannot imagine how they can irradiate the area if it covered in flaring psoriasis?

I need to make sure I ask serious questions of Scouse and House next week. Have they ever performed surgery/given radiotherapy to someone with severe psoriasis?

James has asked about future psoriasis treatment and cancer below. Yes, I have thought about this, A lot. I do know there is a woman in the US who is taking a biological after having breast cancer (my derm did indeed do his homework). The only treatment I can use is biologics. I am non-responsive to everything else. There probably isn't much experience on any of this yet, as the biologics are such a new medicine. Hey! I have just realised I will be logged as a '41 year old Humira taker with breast cancer' in all the data on the drug from now on!

I have said this before in this blog actually: it is not about quantity of life, it is about quality of life.

I have no quality of life when I have severe psoriasis. I do not want to live life like this. I can't. If I have to choose to take a drug to keep my skin under control which might have consequences for a relapse of the cancer, I really have little choice.

Cancer can kill you, but psoriasis really makes you want to be dead.

Please, don't be concerned about me and suicide. I am not suicidal. I am just trying to be honest and if I can't be honest here, where can I? It is not easy to talk to people about this right now in real life; they would think it was the cancer making me feel so low, but it really isn't. I can deal with the cancer. I can't deal with the psoriasis.

Truth is, most of my thoughts are on the possible outcomes of both my scan tomorrow, my meeting next week with Scouse and House and an appointment I have with Silvano soon after...

Not many laughs to be had at Plaingoldband Towers right now. I apologise. I could do with a bloody good laugh and we all know, laughter really is the best medicine.

Ezekiel 37:1-14 (The Valley of the Dry Bones)

Post-Taxotere infusion side effects have hit and they are perfectly on time. Or at least, they have surfaced at exactly the same time as before. At least this shit is predictable...

I made sure I took some painkillers and a sleeping tablet on Friday night, seeing as the bone pain started on the morning of day 3 of the cycle. Lo and behold, 3am and I wake up feeling my leg bones again. I am not sure how effective the Tam is to be honest. I took it again last night and found myself awake in the middle of the night...

Bone pain ok. Long bones, wrists, ankles and knees just feel tingly and crampy. I am taking the prescription-only painkillers and although I can still feel the pain, it really isn't so bad. It wasn't terrible last time, just uncomfortable really. Certainly, I am not rolling around on the floor or anything.

It'll be gone in 24 hours or so, if it follows the same path as last time. I haven't taken any painkillers this morning and I feel ok. I don't want to abuse the tablets I have been given, particularly as I seem to develop some kind of resistance to things sometimes.

Tongue and mouth feels soggy and swollen. Like I have been chewing stinging nettles. Again, not awful, just uncomfortable. Absolutely no sense of taste or, indeed, appetite. I swig Difflam mouthwash, as this will prevent infection apparently.

I am still grateful that I have not suffered much, particularly when I read other womens' experiences and see how much they suffer so badly with the side effects. I am very lucky, all things considered.

Thing is, when I feel like this, I don't feel particularly sociable. I did not leave the house yesterday (even though I had plans). I prefer to be on my own and just deal with it alone. I have always been like this actually. I am quite a self-contained individual.

And anyway, if there was someone with me I might just start rolling around on the floor and milking it for all it's worth!

My hands are still peeling away. There seems no end to this and I imagine it will not go away now until I finish Taxotere. My skin generally is 'ok'. Obviously, a lot of psoriasis but I think some of the flare has lost its sting. The redness has diminished, as has the itch. This is pretty good and I hope it indicates I am not going to go erythrodermic, at the moment anyway. Mind you, I am covering myself in potent steroid at the moment...not clearing any patches (which is what it is supposed to do) and the risk of rebound is high if I stop it. Hah, caught between the devil and deep blue sea again!

I have calmed down significantly, as I knew I would. One thing I have not so much 'learned' about myself, perhaps more 'confirmed', is that when something angers/upsets me, or something happens that I have little control over, I need to rail against it. I need to swear (in private). I need to shout (again, in private). I just need to let it explode in my head. Then I can think rationally again and start figuring it out, making plans, accepting things.

I am not sure if this is what the average person does, but it is what I do. I would not criticise someone else's coping mechanism, so I hope no one criticises mine...

And I know, until I have the results of the ultrasound, that there is little to be done. Once that result in in, then things can be discussed and plans decided upon.

One thing I have noticed over the last few weeks is how people I hardly know are full of opinions. I mean, we all have opinions and some people like theirs to be known. Loudly. Look at the Jeremy Kyle Show...nothing more than people taking a moral highground and then letting their opinions on the personal matters of people they don't know personally, be known. On public television. I suppose if you do hang your dirty knickers out on ITV1 every weekday morning, then they will be rifled through!

I remember being pregnant. You kind of become public property then too and oh, how people liked to give their opinions on my choosing to have a home birth. People I did not know.

Some people are doing similarly with my breast cancer.

Why do some people think that their opinion is wanted? When it hasn't been asked for? When they don't know the full situation? And particularly when they don't really know the person they are giving their unwanted opinion to?

By the way, these people are not from here. I don't want you to think any of our happy Plaingoldband gang are self-opinionated, thoughtless dickheads.

Off to have my nails painted black again. So far, my nails are still attached to my fingers and toes!

Quote of the Day: "We have no right to express an opinion until we know all the answers" Kurt Kobain

Lord, give me strength to deal with healthcare professionals

I was too pissed off to write here last night.

It may possibly have been nothing more than rather a lot of swear words. I was very angry. Very pissed off. Very annoyed.

I didn't think it was a particularly constructive way to be, but I think I needed to go through it so that I could revert back to my more pragmatic self today.

First off, I didn't go into shock with my 2nd Taxotereshit infusion. I knew I wouldn't, of course, but even being a clearish-thinking and pragmatic Plaingoldband, I can't help but be a little human and think 'Oh lord'. It does happen to some, there is no reason why it shouldn't happen to me (I have fucking cancer, don't I?). But it didn't.

Shit day all round though. Best Friend and I were there for more than 6 hours. The West Wing was like the cattle shed I once described it as. The waiting room was full of cancer striken people queueing to get into the ward to be hooked up and the Domestos milked in. I think we waited a good 2 hours like this. Once in, the place was rammed with chemo-cows. One cow in, one cow out.

Consequently, the Bernards were stressed and overworked. No smiles or laughs to be had by them yesterday. Not even the home made brownies I brought in raised a thank you at first.

I had a right miserable and, dare I say it, rude Bernard. I haven't had her before. I hope I don't again. Best Friend and I did little faces at each other behind her back. I did check with Best Friend 'is it me, or is she a right miserable bitch?'. She wholeheartedly agreed, particularly when said Bernard quite literally shoved her out of the way to unplug a machine without even an 'excuse me' or' 'sorry'. Not even a Plaingoldband smile, joke and attempt at empathy changed her scowl.

Now, I wasn't in a particularly good mood myself (although I try to hold my bad moods to myself when dealing with people who have no part in why bad mood has occurred, like the overworked and stressed Bernards).

Saw Omar again yesterday. Last time I saw him, I felt he was woolly and dodged direct questions. Best Friend wasn't with me that time...I made sure I asked her this time if she felt he was a little woolly and she agreed.

Anyway, I was having none of it this time. Omar brought up my psoriasis:

"We think we may have to stop chemo and give you immediate surgery. This because we are concerned about your psoriasis".

Yeah, Omar, me and you both. Thing is, I tried to tell you 3 months ago this scenario might happen and you fucking God-complex oncologists patronisingly dismissed my very valid concerns, concerns based on 30 years of experience of having this disease and knowing what happens when I am unmedicated. But hey-ho, I am just the patient, right? What do I know? I didn't go to med school for 7 years and study to become God, did I?

OK, I am still a little teeny bit pissed off. I apologise. And it is not Omar's fault. He might be woolley and dodge asnwering questions, but it was not him who was so patronising. That was House.

So, they are now concerned that my psoriasis is going to get so bad it might not allow surgery to either happen, or be easy or effective in healing?

This is where it gets interesting. I asked:

"I have had 3 cycles of chemotherapy and 2 of these my body did not respond to. Surely stopping chemo at this point, when we don't know if Taxotere has been successful, when we know the other chemo wasn't, means I will be at risk of relapse?"

My logic here is sound. They wanted me to have 8 cycles of Domestos. This is based on the type of cancer, the grade of the cancer cells, the risk of relapse, my age blah blah. I believe they don't just blindly give you drugs. There is method to all this. Well, you like to think so, don't you?

"Well" said Omar, woolliness and inarticulation radiating from his body and mouth, "yes but chemotherapy isn't that important, your risk of relapse is only increased by 6-8% by only having a few chemo cycles".

6-to-fucking-8-% ???

I thought I misheard him. I should have asked 'so what were the approximate percentages if I had not had chemo at all then?'. But I didn't. I was still cogitating this when I realised he was moving on to something else.

"Surgery is far more important than chemo" he said.

"But another reason for having neo-adjuvant chemo was to shrink the tumour to make lumpectomy possible instead of full mastectomy. If I have early surgery, this won't be possible' I replied.

Wooliness abounded some more.

"Well, we will have you in for your ultrasound and then we will have a meeting with the breast surgeon" he said.

I haven't seen Scouse since March 10th. He has nothing to do with oncology.

"But unfortunately, this will have to be 13 days time as this is the only time we can all meet up, which means you will have to have the ultrasound next week" he added.

You normally have the ultrasound as late as possible in your 21 day chemo cycle. This is obviously because the last chemo you had needs that long to work and for it to show on your tumour. Me? Because of timetabling, I have to have the ultrasound on day 5-9. It won't have had time to do anything. Potential upshot? They will be judging the reduction in Colin's size based on 1 cycle of chemo. Upshot of this? Pretty much no hope of having a nice easy lumpectomy. But more of this later...

That was that then. Off to make appointment for ultraound and then off to God's Waiting Room.

Obviously, the whole 'chemo is not that important' line of Woolly Omar was on my brain. So was the 'increase chance of relapse only 6-8%' line. Even Best Friend was thinking what I was thinking here.

If you are a regular reader, you will know that I had a bit of a wobble the Sunday before I started chemo (4 April). I asked Best Friend 'Why am I actually having chemo?". I was obviously concerned that I had just been told 'you have to have chemo' and no doctor had told me why...no numbers, no percentages, no real reason other than it can reduce the lump.

Best Friend said 'because you will die if you don't'. A very fair comment based on what we understood from the oncologists and specialists.

But now we realise, with some research, that this isn't true. Yes, anyone can relapse and their cancer can come back. Even those who have had radical surgery and full quota of chemo. But actually, chemo is a little bit of a blunt instrument.

For many women with my type of cancer, it is nothing more than an 'insurance policy'. The worst might happen still but you feel better knowing the chemo might have annihalated that odd stray cell looking for a nice liver or lung to settle in an cause problems 5 years down the line.

In fact, it is possible my chance of my cancer coming back if I hadn't had chemo could have been as low as 10% or so, may be a little more. As long as I took the Tamoxifen afterwards and particularly as I only have one enlarged lymph node.

Ladies and gentleman, if I had had that information, I may have considered my options. But I was never given this information at the time and I didn't know enough, understandably as everything moved so fast and House only spent 10 minutes with me, to ask. It all seems so bleedingly obvious now!!!

Something else. You know I have Colin the tumour? A Grade 2 adenocarcinoma? I read my notes again yesterday. Properly. And guess what? Underneath Colin are a number of small 'ductal carninomas in situ'. These are no invasive and unlike Colin, they are in my milk ducts. Many women do not even have treatment for these, although it isn't a bad idea to have them out, because they can get a whole lot bigger.

I have never been told about them. Not a word. I have two types of breast cancer. And no one told me. Moreover, I now see why Scouse said 'your tumour area is actually bigger than the 1.5cm it looks like'...

Yes, Scouse, that's because there are a number of little cancerous cysts sitting under it. But you omitted to tell me this part, didn't you? You didn't tell me this when you were going on about chemotherapy and breast surgery on March 10th.

OK, I am not as over my angry mood as I thought. Need some more time to let it all go and become clear thinking again.

Dogwankingfuckstickhealtcareprofessionals.

Two quotes of the day today. If you know me by now, and have read the above, you'll see why:

"Speak when you are angry, and you'll make the best speech you ever regret" Dr Lawrence J Peter

"Holding onto anger is like grasping a hot coal with the intent of throwing it at someone else...you will be the only one burned" Buddha