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....