Reliving teenage embarrassment and new fears

Yesterday was a bit of a surprise. I found myself expecting to talk about radiotherapy but ended up with the chemo debate rearing its head again but this time the result was I had to pretty much on the spot confirm I was turning down chemo and it was my decision. I am not turning down the recommendation of chemo I was told not to bother as it would have no beneficial impact on my type of cancer. So the oncologist in Brighton does not really agree with the one at Royal Marsden in London but I am going on my gut feeling and sticking to my first recommendation from London. 

For a 31 year old with cancer to not have chemo in hospitals outside London is very very peculiar and radical and therefore they believe risky. It would have been a given only two years ago even in London. It is the procedure across the board really. Even my own GP from an entirely different surgery rang me yesterday and asked why I was not having chemo. So why am I not having chemo? Well, I had a Luminal A tumour Grade 1 (initially Brighton judged it to be a grade 2) and a small tiny fragment of the tumour that broke off into the glands (nodes). Now from the glands that fragment could have got anywhere in my body EEK...unlikely though I have been told but could have. So we had the second surgery and they removed a load of glands to check them; remember me in hospital with a drain thing out of my armpit and dying people everywhere, well that was why). The glands they removed came out ALL clear. But the Brighton oncologist believes that the gland having that small trace in there is a sign and should not be ignored. Gulp. He did not however, and this is crucial, know when he said this that I had had a second surgery which turned out to be all clear, so I will never know if he would have reacted the same way had he been given all the information before hand. Ugh. Tough call but I feel more trust in the Royal Marsden and their experience and connections with all the specialists you can imagine.

So that is that, I signed a consent to have radiation therapy (rads) and I am to go in for 2 hours on 9th June to be tattooed and aligned in the dark whilst lying very still (gulp) then to ready to start four weeks of treatment every weekday without fail from 24th June. So I will be hopefully done with it on 24th July 2010 and then recover for a week or two and...um...well hope for the best that it works.

So on an amusing note I will tell you about my mother who said she doesn't read this blog and I hope today that is true but we will soon find out won't we if the phone rings in a few minutes. My mother a wonderful caring woman with a heart of gold can still completely embarrass me in seconds and leave a stain of shame that hangs over me all day and would she notice when this happens? No. I am 31, old enough to have children, car, house, career, Breast Cancer and I think most civilisations in the world believe that 31 is definitely an adult legally and socially. So why on earth would my mum, bless her, feel it necessary to go into intimate detail with the nurse at the breast clinic yesterday about how I had bad diarrhoea whilst in hospital after they gave me laxatives and they should not have and I spent the night texting my boyfriend in tears. Words cannot. We get outside and she says to me are you alright? Then claims she knew I would not deal with the appointment very well so would need her there for moral support. Oh mum.

Radiotherapy

Ok this is it. I have my date, assessment appointment Tuesday this coming week and Radiotherapy starts 9th June 2010 in Brighton eek the day Phil leaves for his holiday in France. Nevermind eh I will be fine right? Right.

Anyway go enjoy the sunshine people xxx

Hellooooo

Just a quick update. No side effects for oooooh at least 24 hours. I am so glad. So the sun is shining and I am off to Brighton to see friends and enjoy being alive. I advise you to do the same : )
All is good good good. No word on radiotherapy I expect it to be in a couple of weeks as I was recently told by macmillan that 8 weeks is average wait. I have done 5/6.

I have however managed to get several cuts and an insect bite on my arm when I specifically have been warned not to. Doh. I really hope I will be ok.

Sending love xxx

I won't write for a little while unless something major changes like I get treatment date etc. See you soon.

Our wonderful welfare state

Sorry to moan but I am at the limits of my frustration and feel like a volcano ready to erupt.
Concise version - The Student Loans Company want their petty amount of money back for the last payment last term which I am using to pay rent, bills and buy food. The government won't pay a penny to support a full time student. I want to go back to university in October but need to pay rent in summer during daily treatment. No one is going to employ me in a tight job market when I cannot commit whatsoever and am recovering from surgery. How am I supposed to live?

The only way to get any financial support is to withdraw from university completely or become a heroin addict. How ridiculously stupid is it that if I want to hope I can return to university I get penalised by the university system and the government welfare system. I paid taxes and have never claimed a penny and there are no doubt people out there who get money and don't damn well deserve it.

I have no clue what to do. Parents of young people with cancer in education have fought this battle for years and a lot of their children died in debt and frustrated. They are going to support students with cancer by law...in October 2010. WTF do I do this summer with no money and no choices.

Damn hormones and side effects

So the unwelcome guests we call side effects have definitely arrived, oh piss.

You know that feeling of stomach churning queasiness that 'oh shit I think I am going to be sick' feeling that gets so bad you would rather actually vomit to just get rid of the feeling. Well I have felt like that for pretty much 24 hours. That and the accompanying headache that sort of compresses your head all over and gives a dull consistent ache, fun stuff right. It introduced itself on Tuesday but did not move in officially till yesterday and stayed all day and night. In the evening it was joined by a stomach ache and accelerated 0-60 seconds mood swings like I have never experienced. I can explode and cry in a flash and I don't even recognise myself because of it. It is draining controlling it all the time but have managed to warn Phil when I am feeling totally irrationally angry and advise him that he better vacate the area or just not move for a while like being captured by a T Rex. I feel like a monster and it has only been one day. I don't want to be this person. This has got to get better I can't handle being the problem I was always the solution the fixer, the negotiator before. I was the one who calms people down and makes everyone resolve their issues in this house. Ok maybe a bit dramatic as its just one day and all but when you have been pumped full of hormones to inhibit other hormones and not slept for visual violent recurring nightmares, a side effect they failed to mention, and feel full of guilt for getting angry at someone you love you try not being dramatic.

Not the best day yesterday and not the best morning this morning. Still here though eh and sun still shines on.
Let's hope it passes soon.

Phil,

I am so so sorry you have to live with this right now.

T. R.

Computer says no

Oh forgot to say...So I applied for money to pay for university next year as I had no choice but to postpone as you know and here is copied and pasted what the Student Loans Company computer said

Type Tuition Fee Loan	Amount applied for Maximum

Amount you may be entitled to

£0.00

What is the point?

Reuben, the existential philosopher at the age of 10, asked in a rage at life and himself this morning "What is the point?". Well it made me think.
Last night when I had my first show of potential side effects from the pills I take (nausea and headaches) I sat watching 3 consecutive episodes of a programme where 6 privileged consumer driven British teenagers are sent to live like coffee plantation workers, sapphire miners or leather tanning workers. The documentary, that has a strong point to make but is cleverly using the popular reality television route to make it appealing, gives the opportunity for everyone to see that life is hell for other people out there and it is important to acknowledge it and try to resolve it. I know there is and has been tons of documentaries on this topic of fair trade but this one is targeted and feeds directly into the minds of the general population and hopefully will make them sit up and listen.

It is so easy for us all to continue leading our lives without a second thought to those beneath us whom we are crushing with our everyday actions. I say beneath us not because for any reason in the world they should be but because they are economical, developmentally behind, retarded and disabled by us while we continue to walk over them like they are not there. They are not even on the ladder we have climbed and possibly never will be.

There are countless people out there everyday working till they can't physically stand to earn enough to barely cover a small amount of food and shelter, if they are lucky to be able to work at all. Economic slavery is as or if not more cruel, brutal and hard to overthrow than the slave trade that diminished about 150 years ago that now draws out disgust and outrage. Sadly we are so deep in this system it is almost impossible to see an efficient way out.
So what is the point?

These incredibly inspiring communities of people find a reason to get up everyday to find work to find food just to find work again. They live in what quite easily could pass for a horror film set. There is no country bike rides, no realistically accessible education, no cream cakes from the patisserie, no restaurants, no shopping, no ikea, no summer beach picnics, no Sky HD, no cocktails, no parties,  no time to enjoy the garden, no going for a drive to country pub for lunch, no swimming pools, no theatres or cinemas, no light- no reason- no purpose- no point. But they still find something to live for, and if they are lucky someone to live for. We, on the other side of the rather murky pond of denial, complain at every given opportunity and there is no limit to our discontentment.

So today instead of feeling guilty and then just dismissing the above information because it's all too much to take in I feel lucky to be here and so appreciative of what I have. The point for me is that in another time or another country I might have died but here there is an 80/90% chance of survival. The point is for me is I have time and a little money to enjoy what and who I have around me, which is more than I no doubt need to get by. The point is for me is I have someone to hold when hurts and always will. The point is for me that my cat is circling me like a cuddle vulture around sofa and there are people who never will or have had a pet of their own. The point for me is the world is a wonderful, beautiful, amazing place that we, as the privileged ones, get to fully embrace and explore for longer lives.

And yet most of us spend those longer lives completely missing the point.


The programme from the bbc...
http://www.bbc.co.uk/programmes/b00s6103
Some charities worth exploring...
http://www.microloanfoundation.org.uk/What-we-do/How_we_work.aspx Microloans - support people to help themselves with thorough planning and looking at the bigger long term picture.
http://www.communityopportunity.co.uk/ - A project hosted by Sussex University Students for orphans in Malawi.

It's been a while

Hey there,

Sorry it's been a while but there was nothing much to write and I didn't want to bore you stupid with fun details of my non life right now. This last week has been mainly filled with apprehension for what side effects are going to kick in over the next couple of weeks as from hmm now onwards and an absolute certainty that I never want to be a housewife, ever.

Nearly done one whole week on tamoximoxie and no side effects BUT they said clearly there is no chance you would get any for at least one to one and a half weeks if not longer so easy there with the whoop whoops, not just yet. I am truly hoping I get away lightly and I cannot tell you what a massively huge weight off my mind it will be. I have not heard about rads but apparently, so we were told yesterday when we checked, it may still be another couple of weeks till I hear and then of course there is the normal NHS waiting list and all that. So no idea when this will be over and I can't plan or book anything to look forward which is a shit really because I so desperately want something to look forward to. Oh piss. I am bored with this whole cancer thing now, I bet you are too.

I am feeling not up not down just stuck in the middle waiting waiting for life to start up again, come on.

Tamoxifen

So I have done it, I took the first one of 1800 Tamoxifen pills I am suppose to take over the next five years. It was harder to do than you would think. You could say well look you might not get those nasty side effects so don't worry, but perhaps you don't get the weight of it. If I do get side effects any side effects I have got no other option but to persevere so when five years is spread out in front of you the first step can be filled with serious apprehension I hope you understand. Side effects apparently will take a week to a week and a half, fingers crossed for me let's hope it's not all that bad.

The cording everyone keeps asking about it so just a brief reminder. I have a common reaction to this kind of surgery called cording it is a hardened lymph vessel that feels and look like a cord under the skin, it pulls and limits movement, feels permanently sore and eventually will snap in a couple of weeks hopefully! But some sites on the internet say it can take months like Macmillan, I think I will see a physiotherapy if it is still here in a few weeks.

I have no date as yet for the rads treatment in Brighton, rads is what all the cool kids call it these days, and I am not exactly looking forward to it but really keen to know when and what is going to happen. As soon as I know I can book myself something fun to look forward to because at the moment it is just seeing every day from morning to night with no real feeling of heading forward.

The weight of cancer hangs over me now like never before and that is the strangest feeling, I am lucky I got away lightly considering, but it's been and still is a shitty road to be thrown on and I think in all the blur of stress and appointment after appointment then surgery followed by surgery it never sunk in how serious this all is. I can't stop thinking how I sat in the cancer quiet rooms at the diagnostic centre saying to Phil that very first screening day something like 'Oh my god I feel so awful for the people who are actually going through this for real' because you never think it will happen to you, this kind of shit happens to other people not you. Now I know it can happen to me I feel a bit vulnerable and unsure of what the future holds, this is understandable and natural I suppose and I have to confront it somehow.
Yet it all happens at an unfortunate time; my Gran, who has breast cancer by the way, is really not doing so well lately, emotionally and physically, but she is going on 93 so this is to be expected. It does not however alleviate the constant and brutal reminder of mortality and inevitable loss. I love my Gran ever so much, she is a formidable woman, a force to reckoned with indeed. She has been an extremely important figure in my life and I ache ever time I see or hear that is scared, struggling or in pain. She lived through world war two as a teenager working in a London telephone exchange cycling away from oil bombs and air raids. A life of raising children, on rations at first, with a reluctant obstructive husband she never loved or was loved by and she was never rich but worked hard to be comfortable. Fearlessly persevered through every blow life dealt her and to think that she feels scared and alone is just haunting me right now. How do you talk to a Victorian raised independent woman 3 times your age about fear? you don't successfully. But when she can she keeps us laughing with old stories and comments "I have had enough of men to last me two lifetimes" after hearing about the 85 year old who says she looks like she has stepped out of vogue magazine every time she steps out her door.

I would not say I am sinking lower or climbing either I am just as before on an even keel going no where fast but I am ok so don't worry.

We went to a friends wedding yesterday, Phil was best man and a fantastic one at that. The boys were super smart and lots of fun to be around they had a lovely time running wild although they were very tired and grouchy today. I too totally misjudged my ability to be out for that length of time after broken sleep and when we all came home I spent the night being sick and everything else that goes with that. I just want my life back. Never been ill more than a cold for as long as I can remember and I just can't get used this change.

I want my life back

I am a bit low let's put that out there. You might wonder why, why when so much good news has come my way lately. But sadly unless you have been here you might not quite understand the feeling that my dear friend warned me about when you have had such a trauma hit your life the aftermath is just as draining. So back to my roller-coaster comparison; it is like you have ridden this roller-coaster that was fuelled purely by adrenalin, fear and anxiety and then suddenly it stops, but not at the same place you got on noooo it stops in one of the dips somewhere, the ride has stopped but you still can't get off and no one can hear you. It is at this point when every rush of anxiety and adrenalin subsides into fatigue and you look at the destruction around you and you can't find the strength to face clearing it all up because all you really want is a break, a pause button or preferably rewind to before this all happened.

The more you learn the less you know. I think I finally get that concept now, I have only gone moments really of my lifetime with limited use of my arm and I totally hate it. Imprisoned in long sleeves I am desperately wanting to wear summer dresses, go swimming, drive, lift things, play tennis with the boys, pick them up and swing them round the garden, cuddle the cat, cuddle phil, cuddle strangers, well not so much. Most of all not have to fear and think about this damn infection. But there are other people wheelchair bound or paralysed who never have or never will again have use of their limbs and I am not one of them so how lame am I to complain about my lot. My heart really sinks when I think about what quality of life some people have had dealt to them and yet many of them refuse the disability life handed them and live a full active life. Gotta try to take a leaf from their books, it is hard to when your still in cancer stasis.

I also think I have an idea of how the loss of status and meaning can pull you under and lead to loss of motivation and that if you find yourself unemployed or unemployable life can be a prison. I know that I only need to keep my head above water until October but that means keeping busy with no purpose whilst recovering then attending radiotherapy treatment and post treatment appointments with rent and bills that still need paying for five and half months and then who knows. If I would be able to convince someone to employ me right now, not bloody likely, I absolutely dread the idea of working in a soul destroying job I hate, I just can't face it.

It is not that I am depressed in a I hate myself and feel like some self destruction sort of way no I still like me, very much, and that is the infuriating part. I want to retain or get back to being me and living my life not the one that has temporarily been imposed on me. I am just worn out, spent.

Anyway can we just take a moment to try to understand why we are reliving the eighties? Again. Well again again because I swear we relived it before I went to America. I was thinking the other day that when the kids grow up they will relive the noughties and within that they will have to relive most decades in the twentieth century. I have no idea what they will be wearing I can't wait to see what outfits Reuben will chose. We sent him upstairs once to get into some summer clothes and he came down wearing a smart ironed Marks and Spencer shirt all buttoned up to the collar and some stained skanky football shorts, the kid has got his fathers fashion sense.

I had tons I wanted to tell you about today and yesterday but I am sleepy now so I am going to sign off.

Oh but

Forgot to say Tamoxiemoxie, which is what I called it for ages when I couldn't remember the name, does double your chance of endometrial cancer which was 1 in a 1000 anyway and now is 2. hmm well I was 1 in 1500 chance of having breast cancer at my age so can't be that bloody unlucky twice right.

Altogether though the main thing is Surgery and Radiotherapy are localised treatments for cancer so they concentrate on one area alone. Now if like in my glands a small piece of tumour broke away into the bloodstream and I did nothing general to treat it who knows where it would end up. Chemo and hormone inhibitors are the only way to ensure or should I say at least increase the chances of removing and preventing any escaped cells or fragments of cancer around the whole body, you just gotta do it.

http://www.breastcancercare.org.uk/upload/pdf/Tamoxifen_Dec_08.pdf
http://www.cancer.gov/cancertopics/factsheet/Therapy/tamoxifen

Tamoxiemoxie Bring it on

Dear Tamox,

Pah I laugh in the face of your side effects. You think you can take me down with your hot flushes in mid summer, we'll see about that. You give me hot flushes I will give you the Phil Lazarou ice cream emporium. 

Me.

Ok we need to get this in perspective. Breast cancer care are brilliant. 

Most common side effects are hot flushes and nausea, although every woman is affected to a different degree so it is impossible to predict. But I will tell you now hot menopausal flushes in mid summer at the age of 31 will be met with resistance in the form of ice cream. Chocolate or toffee Thorntons ice creams if of course I am within the vicinity of a reputable vender. If not I have a secret addiction to Mars Ice creams even though I don't like Mars bars and I love Twisters yum.

When she ran over the other most common side effects with no mention of loss of sex drive so perhaps not one that is reported back often, Oh and the weight gain well I know I will be busy and active again soon enough. It is a tough thing to be told so young that you will take something that will affect your personal life so heavily but let's just hope it doesn't.

You probably think with all this cake etc that I must be at least shopping in Evans by now but I am not there yet I am yes a little rounder in places mainly due to the inability to exercise for so long but still resemble the old me. 

I feel better after at least hearing from someone who is not just speculating or trying to say something to ease my mind. The knowledge that I may be able to take this pill and not have it totally obstruct my life for five years is really welcome. The doctors and information advice sheets never paint the prettiest picture, I suppose they are so so concerned about being sued that they frighten you silly. I won't know till I start taking it so I am going to take one later today, it takes a good week and a half for the side effects to kick in so start now and soon we will know. (Gulp).

Tired so so tired of this - Sorry

I feel so intensely guilty for not jumping up and down still and being unequivocally happy to be alive, and maybe it will puzzle or astound you as to why I am not just taking this win and running with it. You see in truth I have no where to run other than directly into the next stage of the process, and yes it could be so much worse, sorry to be negative about it, but it could be so much better.

Of course I am relieved I don't have any more cancer in me and of course I am so relieved I won't have to have chemotherapy, all cancer patients biggest fear except the obvious. But it is not over for me not by a long way and I can't move on and put it behind me because there is this horrible risk of it returning and the only option for me is to step into the rather poorly researched and brutal world of prevention which supposedly gives me a fighting chance, we hope. Yes I know. I will snap out of it but let me get this off my chest, or breast or something, ha.

So firstly the tablets I have sitting in my drawer but am totally refusing to consume for at least another week of mental preparation; or let's call it what it really is, avoidance. Tamoxifen, every post menopausal woman's magic little pill, but as I have found with everything for breast cancer all diagnosis, information, processes, treatment, medication, support, advice is totally targeted, designed and researched to help women over 50 who have been through the menopause. This is so so crucial when trying to understand the differences in experiences people have with cancer. Where as me well for FIVE years as a pre menopausal woman here are the common side affects that might happen and keep me from taking that first pill until I see no other choice...

Common side effects

• Hot flushes.
• Night sweats.
• Vaginal dryness or irritation.
• Loss of sex drive.
• Indigestion or mild nausea.

• Periods become irregular or lighter.
• Periods may stop while taking tamoxifen, often because the menopause had occurred naturally or other treatments such as chemotherapy have caused an earlier menopause.
• A decrease in the strength of the bones in pre-menopausal women (this is not thought to affect post-menopausal women taking tamoxifen). See Osteoporosis booklet.
• 
  
• Less common side effects
• 
  
  
  
  • Eye-sight problems.
  • Hair thinning.
  • Increased risk of blood clots (although the overall risk remains low).
  Because of the risk of blood clots, it is especially important to tell your GP if you have any symptoms such as a swelling or pain in your leg or a feeling of shortness of breath.
  • Thickening of the lining of the womb
  • Polyps, ovarian cysts or, very rarely, cancer of the womb
  It's important to tell your GP or specialist if you have any unexpected vaginal bleeding, discharge or pain.

Sounds like a dream come true right? I read this and think why the hell would I want to take this? The cancer is gone right? We have done the whole two surgeries shitfest and everything that brought with it, and risked a lifetime incurable infection TWICE and continue to do so on a daily basis for years to come and the last surgery has blessed me with 'cording' in my arm so painful I want to saw my limbs off, and let's not even touch on the emotional strain and mental stress of the whole ordeal so what now what what what? Oh vaginal dryness, loss of sex drive, risk of osteoporosis and menopausal symptoms and more pleasant side effects for 5 years after Radiotherapy (which I will get on to). Gee thanks. AND now you are also thinking oh my god we have to read this blog for FIVE more years! Don't worry I don't think even I can moan about life for that long.

So part of me thinks go on get it over with start taking them, then sooner you take them sooner you will get some reaction from them and know what is what, but I have a friends wedding next weekend and I want a break from as many of the delightful cancer trimmings as I can. I am so truly sorry I am complaining when you probably think I should be celebrating but this blog has become that perfect non judgemental friend who listens anytime anywhere and does not say anything insensitive, abrupt or ill-informed. As the last spark of celebration settles all I can see ahead of me is the mountain I have yet to climb and I am so so tired inside and out especially inside. I just thought that I might be near the end of the crap but now, maybe not how I will feel tomorrow, it feels like the beginning of a longer crap journey with a most reluctant passenger. Hold that thought Phil just put a slice of banoffee pie in front of me. Alright then life is not so bad.

I will pull myself up the incline I always do, there is only one direction I travel and that is forward but I do it filled with total infuriation because I just feel too young to be here and all the prominent over 50's signs don't make me feel welcome either.

Ok radiotherapy. Well let's just say it's hardly a walk in the park -

Common side effects

Radiotherapy to the breast doesn't usually make people feel unwell. However, your body will use a lot of energy over the course of your treatment so you may feel more tired than usual.

This may affect what you feel able to do. The journey to hospital can be tiring in itself. Many people find they can manage their daily tasks as usual and some people continue to work full time.

Others need more time to rest, so it’s important to take as much time as you feel you need. Everyone reacts differently to treatment but certain side effects are more common than others

• You may develop a skin reaction during or after radiotherapy to your breast, including redness, darkening, tenderness or itching of the skin. This will tend to begin 10 to 14 days after starting treatment. Your skin may peel or flake as treatment goes on, and there may be a red, sore, moist reaction.
• You may have aches, twinges or shooting pains in the breast area. These are usually mild, but can go on for some time after treatment is finished.
• If the treatment area includes the central part of the chest, a small area of the oesophagus (gullet) can be affected, causing heartburn and discomfort. You may also experience loss of appetite and sometimes nausea.

Less common side effects

• Radiotherapy to the breast and armpit can cause tissue hardening. This is known as fibrosis and is caused by a build-up of scar tissue.
• Sometimes part of the lung behind the treatment area can become inflamed, causing a dry cough or shortness of breath. This usually heals by itself.

What? No, you mean you don't fancy some? Aw come on now you have lie still for an hour or so first time whilst they line it up and tattoo your breast then come everyday for up to six weeks to be zapped with radiation localised to the place they found the tumour and there will be no bounding home. 

I suppose what it all comes down to is I was elated to hear the news but the apprehension regarding chemo and further cancer only screened the next step and what that brings with it so now I am utterly deflated while I contemplate the next 5 years and it seems like such a long time right now especially when I am the wrong end of it. I also on top of all this had no choice but to intermit from uni till October or maybe January and leaves a feeling of failure no matter even if I know it's not my fault. I will have to watch my friends graduate and move on whilst I have no idea how to pay for my rent for summer and how I will fund my degree next year as apparently four years in usually the limit I have been told. They may not even run the same course next year. It took me so long to get to uni and bloody cancer might have blown it for me. Also brimming under the surface is the dread of post cancer depression mentioned repeatedly now by friends and professionals as a common result of the experience even to previously stable and mentally healthy people.

Look don't worry, I am allowed off days I will be fine this is kind of part of it and better to express it than suppress it, but with a little banoffee pie now and hopefully a good nights sleep things might look brighter in the morning. In fact I am sure they will. xxx Night xxx

Fantastic news...sort of

Here is a short summary of today, I will fill in the gaps tomorrow. NO CANCER in the glands they removed from my armpit. NO CHEMO recommended for the size and type of cancer I had. Radiotherapy in a few weeks, everyday mon - fri - is going to be a bit poo but over sooner than chemo. Pills for 5 years that normally would not be so bad for most women...except pre menopausal women. Not the most dazzling rainbow but a rainbow none the less. : ) Night xx
Full story tomorrow.

Nothing much to report

There is not a lot to tell you which is a good thing surely. I am totally convinced that the results for the surgery will be fine as I think I heal very well and relatively fast from this kind of thing. On Friday they will tell me if the tissue 'clearance' they removed from my armpit had any traces of cancer and as the surgeon with 20 something years experience said it would be highly abnormal (watch out for that I may well have added the highly in myself) for there to be any traces then I think that it is pretty darn certain there is/was none in there. If there is well oh dear expect fall out from that.

and how am I feeling? well fine really. I can't feel most of my arm it's not nice but not totally unbearable more just uncomfortable. I am loosening more everyday with the exercises and general movement. Not on painkillers today yet whoop. Pretty good huh.

So next...well I go for 12.15pm on Friday and listen to what they have to say. I then reckon they will tell me I need to speak to an oncologist about the possibility of chemotherapy, side effects and pros and cons and then the decision essentially is up to me. (Gulp).

Meanwhile I sit in intermittent gentle sunlight, paint brush in hand after editing my favourite half written novel, music on in the background and well wishes flowing in from all corners of the earth and it keeps me sane. Thanks.

Yellow stuff

The sun shone all day today. I am happy although mildly convinced I have a robotic arm. The end.

Nurses

I woke up this morning thinking about the nurses and how they would be doing their rounds taking observations, washing people, filling out paperwork, dispensing medicine, making cups of tea or fetching water, cleaning wounds, setting up drips and IV painkillers, taking people to and from the toilet or bathroom, comforting people when the doctor gives a diagnosis, smiling although they just worked twelve hours and should logically have absolutely nothing left to smile about. Nurses are amazing, come on allow me this one generalisation.

Perhaps I glamorise it in my head but I really don't believe this is a job you do because you need cash or because you can't find anything else I really can't accept that they take the job for any other reason than genuinely wanting to help out with other peoples lives. Cancer hospitals like I said before are a grim place and that is the nature of the beast, it is not the facilities or staff that give the place such a dark cloud it is the cancer. They will never become a fun place to be and that is that. So to work in one of these places willingly and stride in everyday for 12 hours (they work 3 and sometimes 4 days a week to compensate) and deal with everything they see and hear is just unfathomable. It totally demands, and quite rightly so, extreme respect.

They admitted to me that if you are mobile and can move around you tend to be neglected and that sucks for me when I got overlooked but I had to keep remembering myself that poor Linda or the others who are completely disabled in bed need their precious time so much more. When I really needed something they were there in a super hero like flash. They did not stop for one moment and were so so busy day and night, nothing was too small a task and they never complained or looked even remotely annoyed. They even shared their jelly beans with me. Nurses of the world you totally rule.

Talking of amazing people my amazing and beautiful best chum Bethan Hall is running Brighton Marathon right now and she is raising money for a sweet little girl called Erin Lodge with cerebral palsy and she is also running for breakthrough breast cancer (me). Sorry to ask for money again so soon but if you can give then give...
http://uk.virginmoneygiving.com/fundraiser-web/fundraiser/showFundraiserProfilePage.action?userUrl=bethanamihall

I also have a lovely friend who is surviving (just) on a quid a day for 30 days to support vulnerable or homeless women's project through St Mungo's charity in London. http://30days30quid.blogsp
ot.com/  http://www.justgiving.com/30days30quid 

There are so many lovely people doing lovely things out there and I am lucky to know some of them. 
By the way I am doing much much better this morning, yeah yeah I still have a very sore shoulder and my tummy feels like someone has punched it for two days relentlessly but I also have my cat, sunshine, nice food, Phil, chocolate, my clothes, blankets, television, peace and quiet.

Love love love xxx

Poo

My apologies first off for not writing a blog for a couple of days, I have been otherwise engaged. When I say I have been otherwise engaged I mean to say I have spent more time in the toilet in the last 48 hours than I have all year.

I wasn't going to tell you out of some strange British propriety and embarrassment, then it struck me how ridiculous we are about poo. We would rather go on Jeremy kyle naked apart from a pair of spanking new Reebok classics than admit, even to our own family, that we actually poo although it is something each and every one of us does, hopefully for you, everyday. So although I have poured out each and every inner thought and fear onto these pages I still held back and had second thoughts admitting the troubles and torture of having diarrhoea in hospital. Then I thought well of course you would be absolutely thrilled to hear a detailed description about stomach cramps, shivers, nausea, dehydration and the pain of consistent diarrhoea all day and night in a, for the first time, silent cancer hospital which had run out of private rooms, and more importantly private toilets. Well let's just draw a line under it and say it totally ended this chapter of the ordeal with a cruel almost taunting poignancy. I had diarrhoea because commonly people post surgery have constipation, yes I know another delightful experience, and they gave me medicine to help make it easier for me which I have to say is the sort of help I can live without in future.

People keep telling me I am strong. I am not feeling so strong. The truth is I broke down on Thursday when they said I couldn't go home and I remained caught in the current near that low ebb ever since. I think I had used up all my strength getting through the first three days knowing that I would be leaving as they promised me on the first day so when they said I could not leave I of course smiled politely until they left the ward and then found I could not fight the tears quietly behind the curtains. I had not slept more than moments and those moments were on my back which is a position I have never found comfortable. I had listened or directly starred for hours in our cramped room into the world of suffering a poor elderly dying woman lived in. She could hardly draw breath, was dosed up high on morphine, was thin and breakable, rarely spoke or moved and worst of all she was somebody's mum, someone's grandma. I would never want to watch anyone I love lying there like that, waiting for death in that bed starved of daylight with strangers eyes on their every waking moment. The whole time I was racked with a strange guilt because I didn't want to look at her I felt bad that I was so naive and selfish but I think that is understandable in hindsight. I am 31 (just) and have not had anything remotely wrong with me let alone been in hospital since I was 5 and got stung by a bumble bee who left it's sting in my swollen knee joint! I only found out I had cancer a few months ago and I am running on empty down a bewildering path with no map, no provisions and no faint clue of the destination I think I can forgive myself for finding the hospital a hard place to be.

So it's over right. Turn the page, start over and put it to the back of my mind right? Right?...The trouble is my mind is flooded with all the conversations that my headphones would not block out without disturbing other people's comfort around me or my hearing permanently. The first lovely lady who left the morning of my second day was my dearest companion but still stained me with fear as she had breast cancer at 41 and now has unrelated breast cancer again 18 years later. Chemo brought on her menopause but she had luckily already had one child. The two women who came in on the 3rd day managed to catalogue between them every type of cancer and side effect within their constant monotone discourse (apart from the occasional break to sing along to hymns on Radio Marsden) which included discussing the blood soaked knickers one of the poor ladies had been left in for days. The lady opposite her had a reaction to the chemo and her throat closed up and face swelled until they injected something to stop the allergic reaction. What a total fucker having cancer and an allergy to chemo, that is beyond cruel. You can't escape from it, the glimpses of people lying in beds down the corridors all different faces but same expression. Death and suffering sometimes one after other.

Both Phil and my brother Ian said to me they never want to ever see me in there again, I agree. I remember exactly how exhausted I felt just visiting Janine years ago in a ward very near to my one and how I would have done anything to get her out of there but sadly for some people that place is a huge part of their life to the point they know every staff member by their first name and there is nothing anyone can do to make the place any better it is unfortunately the nature of the beast. Someone incredible donated the money to build a huge children's wing which they are making visually significant progress with every day. It fills me with a simultaneously contradicting emotional response of restored faith in human nature and total despair.

I am at Phil's home tonight moving from bathroom to sofa still and thinking about my old lady on so much morphine she is not of this world and probably better that way too. Hope the night goes easy on you Linda.


Do me a favour give something, if you can, to these people...please. Then take a deep breath and persevere through it because you really are so very very very fucking lucky.

(Donation links on left hand side)

come down

So the fun painkillers have worn off now and the come down has kicked in. I am tired, desperate to fully wash, uncomfortable, bored, hungry, sore and quite done with stories of every ailment a persons life can be inflicted by. Sorry to moan but I think it is fair to claim that cancer hospitals are the most depressing place...and I am in a room full of Cameron supporters.

So after I was injected with radiation I hoped for a super power, finally success I think I have turned invisible. The nurse promised pain killers at 8.30am but didn't notice me again until I rematerialised at the desk in the late afternoon.

They don't like sleep here apparently people with cancer don't need it. So whispering at night is banned. Night staff are generally encouraged to make as much noise as possible especially, I believe the rule is, when they are next to my bed.

Forget dignity and privacy they don't live here anymore.
Enough I want out. Nurse said not tomorrow. Maybe not next day either. Shit.

yesterday now a distant memory or is it just the drugs

Well I am so glad yesterday is far far away and never coming back. Today started painfully but is now filled with lovely drugs that make me feel like I could run a marathon tonight. NO pain no worries. My dad came for most of the day bringing sandwiches without any filling and crackers! BLess him. He was lots of fun. Then my bro came which was lovely as always. Then Phil brought most of m & s. Sorry I am a touch out of it got a pharmacy in my blood stream. Anyway just checking in to say I am doing well. I think. X x

full description if you can handle it.

I am lying here at 4am using my phone ever so briefly after typing this for hours offline. The reason I am awake at 4am and have been all night is because unfortunately the terminally ill lady opposite needs pain relief and assistance with breathing every few minutes. But who needs sleep after surgery eh. Should I complain? No not to the understaffed underpaid nurses who are just trying to do the best they can with facilities that don't cater for a variety of patients. But if you don't mind you said you d always listen so can I tell you about my day instead?

So after 3 days hectic planning I left the house at 5.30am and headed off arriving at sutton am hour and ten minutes later, if phils car could fly it would have done at the speed he d whisked me off to hospital in. I was to my absolute relief given a private room only to settle in and be moved to a nearby cramped ward with my bed is situated opposite a terminal patient and a lady having chemotherapy. Sound appealing for a hospitalized first timer?

After going 24 hours without food or water and waiting all of 8 hours in a sunshine burnt room with thick surgical stockings warm enough for an Alaskan swim I still when the nurse actually remembered I existed nodded when asked are you ok!

So at 5.30pm I headed down to be greeted by an unfamiliar person who didn't hide his understandable desire to get home. I was last of the day and there had been a string of complications preceding me. He then left me half naked in a cold pre op room and went into theatre to set up for ten minutes.

I absolutely could not wait to go under to relieve the headache that arrived at 1pm through dehydration and has returned now through exhaustion. I vaguely heard the surgery went well from the swiftly departing surgical team and I told them they were amazing whilst resisting the urge to say they are far from amazing at scheduling operations and retaining the 8 hours of torture I will never get back that now may mean I am in here longer.

Phil. What can I say? He went without just as long out of a gentlemanly desire to suffer with me, but this is the man who ate cold beans to prove his love I may I add did not. He did the right amount of hand holding, hair stroking and soft laughs to give me enough support to walk down a very rough road.

So I lie here oxygen tube up nose, bloody fluid draining from a sore wound into a large bottle, I v needle numbing my hand throughout the heat of the night with the background noise of strained lungs and vomiting and what do I feel? I feel lucky to be alive and so relieved that in a few days I can close the chapter of book on how to survive two operations in three weeks and not fall to pieces...much. love you all dearly and please stop to appreciate your life today.

signing off

I have been warned that I may be out of contact for the duration of my hospital stay so just letting you know that I will be in touch soon. Love x x

Story so far

So just to get this straight thought it might help anyone new coming along to join the journey...

31st January 2010 - Found lump (gulp)
1st February - Doctor checked nah don't worry let's pop you off for screening.
10th February - Screening day, 4 hours of waiting and tests and mammograms and a needle biopsy or two. Yikes.
19th February - Got letter accidentally letting me know I had cancer, nice one doc, (Saturday morning) two day wait to speak to someone. Worst weekend ever.
21st February - Got referred to The Royal Marsden in London saw Brighton Macmillan nurse for part diagnosis sent home for another night of worry.
22nd February - Got full diagnosis from Brighton clinic consultant - 2cm cancer in right boob I would be looking at chemo definitely then radiotherapy but surgery first.
3rd March - went for second opinion at The Royal Marsden London Surgery booked 23rd March no offer for treatment until they have results.
18th March - Called up to London for an urgent ultrasound.
19th March - Saw fertility expert 15 floors up in an ante natal unit to be told chemo may bring on menopause. nice thanks for that.
22nd March - Injected with radiation - no super powers.
23rd March - Day surgery on breast and armpit. Ouch. Let out of hospital late pm.
1st April - Post operation check, they found cancer traces in the glands, maybe more surgery...chemo still possible.
9th April - Surgery booked in for following Tuesday to remove glands.
13th April Surgery in Sutton on armpit (Axilla) will be in for up to five days. Results expected ten days later in London.




So quickly about me today - I have that weird breathless feeling again I had almost forgotten how that felt. I am tired and obviously apprehensive, feel like life may change as from tomorrow. I am off to Eastbourne to get something to wear in hospital and to not be alone if I am honest. Eek.

Out of the blue

So after some nice food, sunshine and cat cuddles I am feeling more level headed, I am alone but ok. I bought a new rug the other day yes yes it is bright probably not your thing but it is mine and I love it so I painted the kitchen steps to match it and I am going to pop out and varnish them in the garden.

Just promise me everyone, tell yourself, tell your friends, tell strangers to be vigilant at checking your breasts. Please. That is men too yes men can get breast cancer too. 'Over 45,600 women and around 300 men are diagnosed with breast cancer each year in the UK'.

I am totally going to get this damn cancer out of me and then work my arse off to limit the damage to anyone else. It is all about finding it early and supporting the research to find prevention and new less drastic treatment.

Cancer Stasis

I will tell you a secret. My plan for the next few years was to complete my degree then move on to do a masters in September, squeeze in a little more travelling during the breaks, start an online magazine focused on trying to rebuild confidence and break down the unhealthily desired body image of most young people and of course deep down inside I was thinking that children were the next step for me. The worst thing I am finding so hard to let go of are these delayed or lost plans of mine. I am in cancer stasis, going no where. I still do not have any idea what the future is going to look like and the doctors being doctors don't always paint a pretty picture.

After the usual nausea filled hour long wait in a large chaotic room surrounded by significantly older people looking at you like you are lost we were seated in a small room and abandoned for another half an hour. Until the registrar I saw last week comes in and proceeds to run through more gory details few of which I retained fully as she was the one with the fast speed South American accent I cannot fully decipher. So things that stuck with me; I am booked in for surgery on my armpit (axilla) in four days, as in TUESDAY, in Sutton. The surgery is called a ????? clearance where they (ick) move all the nerves and importance stuff out the way and take out a load of tissue including maybe all my glands. They run this through a ton of pathology tests and come back to me ten days later with results.

So the surgery - There is way more risk for lyphoedema, that incurable infection I keep fretting about. I may not feel part of my arm because they have to break through some nerves that cross over horizontally and they may never reconnect or not properly. I will no longer have glands in my armpit so my other glands will have to work hard to cope and I may find future problems due to this. It is 'not ideal' to be doing the operation so soon after the last one and I am pissed off to have just got back on my feet to be knocked over again on so many levels. I will have to remain in Sutton Royal Marsden for 3-5 days with a 'drain' in my armpit, so totally panicked with how to ensure Phil is there for me but retain enough holiday for him to sweep me out of the country when this shit is all over I have no clue. My degree, I have no clue. What to do with the children who are supposed to be back with us Friday whilst I am still in hospital, I have no clue and then of course I need them to not be near me for at least a week so I don't get infected. What to sleep in, what to pack, finding time to get prepared and rest, I have no clue.

The treatment - She did not mention radiotherapy once. She talked of chemotherapy more times that I wanted to hear. Her bedside manner was not exactly what I would call gentle unlike Mr Gui who I had expected to see yesterday but was called into surgery then trapped with another patient. She said that when they have all the information and they can see if the glands are clear or not then they will recommend treatment by putting in the data in a computer and seeing if their stats show women with my situation undergoing chemo and how many of them are alive in ten years compared to not undergoing chemo and see the risk. 10 years! What the fuck did she say that for? I am sure she has trained for years and knows more than I could imagine about breast cancer but she knows nothing about people because that kind of phrasing would not have left my lips if I was talking to someone who is facing what I am facing.

She also talked of the slight possibility of the little microscopic pieces of the tumour having broken off and gone through the glands into the blood stream and that if there is any evidence of this chemo is the best method to ensure we get rid of that or of course it would wreak havoc anywhere I have blood flowing. I agree but I stupidly had convinced myself I would not have to have it and the reality is not going with me on this one.

So I am sorry that I can't appear to be incredibly positive about this right now but I think I deserve to be entirely fucked off for just a day or two, I will turn it around in no time at all, possible later, and bounce back no doubt about it but come on you have to admit it is shit by anyone's standards.

Here we go again

London again today. I pretty convinced they will suggest more surgery and I think I will, if I am sensible, say yes.
I slept really badly last night had nightmares which is the first sign for me that I am truly anxious about anything. But no tears only fears.
I will keep you posted when I can.

Gratitude

Today I am glad to be alive.
I can't help but think about the other people I was in the day surgery with and how one at least had a full mastectomy and the others might have had terrifying news in their post operation appointment far outweighing anything that I had to face. If more surgery is the way forward then at least I can breathe easy that the cancer will be gone come what may side affects and issues cancer free is cancer free.

The sun is shining out there and I am healthy enough to enjoy it, I have an amazing family and friends who love me unconditionally, a partner who would selflessly swap places with me in a heartbeat, a cat who knows nothing about it and would not care anyway but he is cute, money to buy food and time to be creative. What more could anyone want or need, right?

So Today is about enjoying life. simple.



p.s. Someone said they had a problem reading updates to my blog so just to remind you if you put your email address in the box down left hand side you will be emailed directly with all updates. xx

in it together

So officially as my 31 birthday commenced little Isaac reproduced his dinner all over the hotel bed. He looked up in tears as we journey towards the bathroom slowly and said sorry he ruined everything I said don't you dare say sorry we are in this together as always. We are sitting reuben Phil Isaac and I watching Japanese cartoons till we fall asleep.

Full debriefing

So I arrived in the rapid diagnostic assessment unit (sounds like some MI5 building) for the right time in the afternoon and they have no record of my appointment. 'You are here to see Mr Gui?' 'Yes I am' 'Oh'. I hate that the whole build up and grief of travelling in pain 9 days after an operation to London to find out I am not booked in. I show my appointment card and the lady goes off to sort it. She returns and I am seen 40 minutes later than I was supposed to be but not be Mr Gui by his registrar. She talks through my pathology report in a lovely South American accent with the V's sounding like B's which is totally throwing me off balance when we are talking about bascular and beins all the time. So bottom line is I know a little more than before but I still do not have the full picture. What I found out...

There was no trace of cancer in the margins of tissue around the tumour they removed 9 days ago, so the cancer had not spread to the cells around the actual tumour (inside the lump of breast tissue).

There was however a trace of cancer that had escaped into the glands.

Chemo was mentioned ALOT but it is still not guaranteed treatment for me although they reminded me often that normally at 30 this is the procedure.

Radiotherapy was mentioned ALOT and is a given, I will be having this no matter what I do.

But the surprise that for some reason I had escaped to consider was more surgery. That is what it seems the Royal Marsden suggest I have done now to remove the trace of cancer. No brainer right get the cancer out of the body simple done dusted. No not at all. Firstly I did not in any way want more surgery after hardly recovering from the last one.

Secondly there is officially no medical evidence either way that the tiny trace of cancer in my glands will definitely or definitely not turn into a dangerous tumour. So who wants to risk it? well when you know that your chance of having lymphoedema http://www.breastcancercare.org.uk/about-us/our-services/local-support/information-sessions/lymphoedema/, the incurable shitty arm swelling painful infection for life, is multiplied by the surgery it makes it a tough call.
No research has been done so no one can tell me if in five years I will regret opting for surgery that will turn out to be unnecessary and drastic or in ten years be sitting there with cancer again because I didn't op for surgery and it spread (even with surgery I of course could just as easily get cancer again unrelated). No evidence no advice total gamble. WTF do I do?

If I have radiotherapy on my armpit aswell as my breast then the risk for the infection is just as high. Radiotherapy is not, like all cancer treatments, a guarantee for it not returning it still may come back it is a preventative measure to kill all the cells in the area in a hope that it stops the cancerous cells developing.

I am going back again to see Mr Gui on the 9th April and this time I really fucking hope they tell me something I can trust.

So bring on some sunshine, giggles and yes yes yes cake and off we go to see my bro tomorrow for two days of totally forgetting about this crap, who am I kidding, and having a cancer free birthday : ) Happy Easter everyone, sorry to be a drag.
xxxxxx

quick update

I didn't get an answer to the chemotherapy question. I am probably looking at more surgery which is devastating. On a phone on the bus will fill in gaps later. Cancer not in breast tissue but found trace in the gland. Going back next week.

Going to London today

My stomach is in my knots and situated somewhere in my throat. But I am sure it will be fine. I will try to let you know later what the verdict is, if not tomorrow. No doubt if it is good news you will hear from me sooner.

The only request I am making is to handle me carefully after I find out either way, I normally let you all know where I am at emotionally pretty swiftly but let me just say that although no doubt we all will feel this relief immense relief that is has not spread and no chemo necessary if that is what they tell me, however I don't know if I can handle too much celebrating because inside I will be carrying with me the verdict and treatment plan they have given (making it very real) and we all know none of the treatments are fun and without shitty side effects and radiotherapy still essentially means side effects, hospital daily visits, more risk for this incurable infection and I will have to give up uni for now and that is going to hit me hard. The Macmillan nurse warned us that commonly women find the surgery the easiest bit and the treatment far more challenging, I hope to disprove this theory but I can't promise.
I am pretty much asking, and I have not until now, for everyone to be aware that I might not take either news well so be ready. I might not but I might, so handle with care ; ).

Anyway giving you all the heads up. xxx

The truth comes out eventually

I think it's time to share with you an event that will shock you that occurred at the weekend. A few of you know already but for the others you may want to brace yourselves because this story involves a theft of chocolate cake. I know, (deep breath) I will continue. My brother Paul and his lovely wife Carrie called to ask me what cake I would really like for them to bring round. I replied I love those crispy crunchy chocolate you know cornflake cakes like when I was younger. So he delivered as big bros do. Later that day I innocently fell asleep on the sofa only to be woken to nom nom nom next to me while Phil yes Phil Lazarou.me devoured the cake in it's entirety. NOT A CRUMB LEFT. Believe me I know, it took me a while to accept it too that anyone could do such a thing. In his defence he did ask me if I wanted any...while I slept.

He did however cook me and the lovely Rosie Bacon (coolest name ever) a super nice roast dinner last night after he had finished work and gone straight out shopping then drove to the other side of town to get me something to relieve my mouth ulcer farm even though I protested the detour so I think maybe I can let this one go.

Lazy day today I hurt again, woke up on my front and let's just say that really sucks, also probably did too much wandering about yesterday so I've cleaned the kitchen after the Lazarou Roast Emporium had painted the walls with lamb and back on the sofa to rest, sorry Daniel no shower yet. I know I know.

No news is good news

Just a short short note to let everyone know I am ticking along just fine today and feel ok with hardly any pain killers so recovering well and slept ok too. I even gave myself a shower wash just fine no worries : ).
I received some cheery daffs this morning so have spread them around the house so there is no where I can look without seeing them, Thank you Jackie and John very much appreciated xx
I am off to see Isaac at school in his classroom this afternoon and I feel excited about my first lone expedition. whoop. xxx Love you all very very much.

Dips in the dark

As I have previously referred to it one way to describe this is like being on an extreme roller-coaster you were forced onto. The ups are filled with the bitter sweet knowledge that inevitably you will have to come down again and there is no real way of knowing when the dips will appear sometimes you can see them and sometimes you are completely in the dark. You can't simply step off when you want to and you have no idea when it will be over. Oh and everyone around looks scared and there is always that one or two who don't seem so fussed on the surface.

Last night was one of those dips in the dark.
I fell asleep on Phil's lap as I used to quite often do before I had this affection embargo enforced. I miss affection so much, it seems like the cruellest irony that when you need hugs the most you physically cannot give or receive them. When I awoke disorientated my pain killers had worn off so in a very assertive rush the right affected quarter, throat, ear and back all fought for immediate attention. Yet the worse part was I had forgotten, totally drifted into a nice sleep and forgotten I even have cancer. I went to sleep weeping thinking about how everyone I knew had something they were looking forward to graduating, birthdays, weddings, holidays, babies, travelling and it is not that I felt any resentment whatsoever I just so badly wanted to be among them, last night I would have given anything to not be in my shoes. Phil said he had never seen me look so scared while he stroked my tear soaked hair as I fell asleep.
Today I feel more positive, must be slowly climbing another peak, who knows how long it will last. Sometimes you just have to smile and hold on tight.

I am reading my Dads book he is currently writing, it is in a word amazing. I never really thoroughly took the details in last year when he sent me bits of it at a time but this time round it's like I have new eyes. He describes his childhood so eloquently, capturing exactly how it feels to be a child full of innocence, fear, anger and curiosity. It is like I am there surviving it with him, I was so much like him when I was younger and I am so much like him now but it takes delving in to his inner most thoughts to see it clearly. He talks about his fondness for his dog Bob and running out back of the new house they had just moved into with Bob leaping through weeds as high as him and feeling like he was king of the garden. One of my most vivid memories of childhood was moving into a new rather run down house and being released like a excited whirlwind into the back garden with my bouncy bearded collie Frisby. I never knew how high Frisby could bounce till that day. The weeds were so tall I could have got totally lost in there for days, all I could see whilst I ran through the tall grass and flowers, feeling very Alice in wonderland, was Frisby leaping above the grass in a happy frenzy with me, best friend forever. I suppose it leads me to thinking that with childhood being such a beautiful experience for me because of everything my parents gave, gave up, believed in, strived for, provided that to watch their daughter, they spent years of their lives protecting from harm, have cancer at 30 must be every parents worst nightmare come true.

But at least I WILL be ok. My heart goes out to anyone who loved and lost someone to this disease, because to go on this tiring journey is bad enough but to then to lose the person you have travelled with must be unfathomably painful, I can only begin to imagine.

p.s.

I don't want to tell you this but. After I was caught trying to cut cheese with a bread knife and severely chastised, exaggeration, for ever even considering the notion I asked Phil what if my boobs always look like this whilst examining the strange round yellow sponge thing under the transparent dressing. He turned and in the most nonchalant manner replied I will call you pineapple ring boob.

Bored Bored Bored

Today in short has been me over doing it again trying to tidy leading to my dressing looking in desperate need of a change due to the nice shade of red it had turned, too much information sorry, which I had done swiftly by a nurse at midday who tells me everything looks alright under there and that is good news indeed, no signs of infection or anything of concern. This followed by lots of sulky painful squirming on the sofa prison which is my own fault for trying once again to do too much. REST. yes yes yes. I will.

BUT I am mostly fine nothing major to report. xxx

Is it really only Thursday?

Shit. Sharp intake of breath. Is it supposed to hurt this much? I ask Phil welling up as the pain killers are clearly wearing off. Yes I am afraid so he replies that is pretty normal I reckon. Damn it surely my little smancer can't be causing me this much pain. Ok deep breath now I am a big girl right. Well in truth I feel like a useless sick child and on top of that my nurse is unwell he has a cold and cough which I have caught and my throat feels like I have been eating razor blades. I am super annoyed that it kicked in right now could it not have waited a week till I had a little more strength. I over did it yesterday and I am paying for it today, absolutely exhausted and the discomfort is relentless. I have realised I am not a good rester I need pinning down or I get up to do stuff every ten minutes. This sucks. Let's hope it is over soon.

I can't stop imagining what my clingfilmed chicken fillet looking boob looks like under all the dressings, I don't think it will be pretty that is for sure, gotta prepare for that somehow. I am not exactly a vain person but I liked my boobs as they were and I could always rely on them to be there until they turned against me, the bastards. I am sure some people breeze in hospital wop off their boobs and get over it in a heartbeat but any changes to my body after having a predominantly consistent figure is a shock for me and I have to be allowed to grieve about it if I need to. The first lesson about cancer once again is no two people go through this the same way and feel the same impact from the same events.

What I also realised very quickly is that the media present to us examples of famous people (who obviously go private and don't suffer the worst part which is the waiting) boldly taking on cancer and kicking it's arse but we never get to see them crying in their bedrooms they don't show all the private vulnerable moments they undoubtedly have so there is a pressure on us normal people to appear strong and brave all the time. But like my bro Ian said to me true strength is about being brave enough to let it out when you need to, tears, screaming the works. To show everything that's inside is braver than hiding it all and putting on a front. I like to think I am being brave about this but some days I am not quite convinced.

The worst patient ever

I am not very good at this don't lift things malarkey. I am so full of pain killers that I forget and go to lift things that I shouldn't especially when Phil is not looking. Must stop and rest. I am very sore but come on someone sliced open my boob and armpit. I know exactly when four hours is up without looking at the clock because that sharp stabbing pains are pretty assertive. I am wrapped in dressings and terrified of what is beneath them but luckily I am forbidden to look so that is fine with me aside the discomfort of feeling bound in. Sleeping is tricky but I reckon I will heal fast and be on my front again soon. 

Yesterday was fine as an operation can be I reckon, it's hardly going to become one of my favourite activities but certainly was not as bad as I had imagined it could have been. I went in to the ward at 7.30am and was so super lucky that I went down to the sparkling clean 2 month old operating theatre at 8.30am, I was first. This I cannot state with enough emotion and conviction was amazingly fantastic. I was however somehow the last to leave! Hmm nervous moments well my heart nearly stopped when they said you are first even though I was so glad it was a shock but so much better than another poor lady who was begging to drink water after 7 hours of waiting. Next thing I know they are panicking me about me having a temperature of 37.6 because anaesthetic can cause big problems if you have any possibility of an infection like a chest infection or cough. You apparently start to splutter and cough on the operating table very dangerous and difficult to deal with so cheers anaesthetist for totally freaking me out but I get that he needed me to understand the severity. I have been around Isaac with a cough for weeks and Phil has one and Reuben a cold so I was really worried about that for a moment or two. But I can't have been that worried because I went for it anyway and said I want to go through it, no opting out. I figured they would have cancelled me if it was that risky. I get walked down to the theatre say goodbye to Phil and who can't remember the way back and gets directions from the nurse (we had only come down one floor bless him). I meet the anaesthetists colleagues who were SO SO SO seriously amazing. These people don't actually have to be so exceptionally gentle and kind it is not an official demand of competency for the job but they were so comforting including the chap who held my foot and smiled with the 'you are in the best hands possible' whisper just as I pass out. Awake again with a Jamaican lady who was totally hilarious as she bitched about how long the slow as snails surgeons take to do their jobs. My operation was an hour longer than it was supposed to be but that is ok it was probably the research trial thing they did using a super tiny camera that extended the surgery. Super amounts of pain killers and I am off back up to Phil about midday and he says 'so where have you been lady?' He won't describe it but I have no doubt there was a lot of worry going through his brain as he said goodbye to me at 8.30am and expected me to be under for 1 hour to 1 1/2 hour and I don't come for 3 1/2 hours instead.

I didn't get to speak to my surgeon for any news he was busy doing a lot of operations that day but I obviously know that the glands were clear with the tests they did during the surgery so that is 3 wins for that particular issue. The big huge one is now I wait and wait for the results to be run through many pathology tests and they will come back to the team who plan what they recommend for treatment and I find out on 1st April, no joke.

I am not so worried right now but for sure as it gets closer and especially on the day I may be pretty stressed out who wouldn't be. So to run over it again If they find cancer cells speckled in the tissue round the tumour they removed then more surgery to remove more breast tissue and then chemotherapy then radiotherapy. If they also find more cancer cells in the glands after further testing, this is apparently quite common, then it will be more surgery and chemo and radio. If they don't find anything anywhere whoop whoop then I reckon radiotherapy and hormone therapy (which is pills every day for 5 years) is on the cards and although to most people no one would opt for this shit I would take this option, safely of course, in a heartbeat compared with the other two. So all I can say is fingers and toes firmly crossed for the results to come back clear. I am hanging all my hopes on this being the case I won't deny it. 

This morning I woke at 1am, 2am, 3am, 5am, I cannot stop weeing after all the water I drank. But the sleep in between feels more restful and although I am sore I am feeling pretty perky today. I got a train home after it took all morning to get dressed and laugh off the hair style Phil created for me when I couldn't reach my arm up to put my hair up properly. If 80's side high very bumpy ponytails are in right now then I was the coolest person in London this morning thank you personal stylist Lazarou.me. He has been fantastic and entertaining and so very very sweet. Monty was so pleased to see us bless him, he was not so keen on my mum and her friend coming to clean the house for me. It was so very kind of my mum and Debbie to get everything sorted and so thoroughly, bless them. Mum claims it was to distract her from worrying but I doubt it worked. My dad took stuff to the tip and sorted handyman style domestic chores we never get time to do. I keep hearing oh my god from rooms round the house as Phil finds more tidied areas like a sparkling cooker that has probably never been cleaned and would have taken almost the whole two days we were away. Endless thanks are due. 

Still all is well now I am all comfy in my new blanket mum bought and looking at my pretty flowers from Phil's mum Pippa and his step dad Robin and the nicest present from Rachel so sweet and lovely and perfect for me. I am totally chuffed to be back with Monty, who just attacked Phil's arm in protest for us ever abandoning him again.