Welcome to the c word

I rarely show the world what is going on inside it is just not my style. I hide pain and constantly worry about worrying other people and how they will feel about how I am feeling. I keep my problems to myself and sometimes even from my closest friends. Well not this time.

I have been on the c word roller-coaster (I'm calling it the c word to go easy on the faint hearted) for over three weeks now and have decided it is a good idea to write down what's happened, happening and going to happen then whoever wants to keep up to date can without being forced to hear about it through emails from me. Because you will all have days where you just can't or don't want to hear about this. I get that it’s ok.

I hope not but you also might meet people or know people who go through something similar and it might just help them in some way to know they are not alone and when they fall apart it is ok because who wouldn’t. When you read this please forgive grammar and spelling etc I have not slept for three days and sorry too if it is up and down that is pretty much how I am doing most days.

- Tuesday 23rd February 2010

Tuesday 30 March 2010

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.

Monday 29 March 2010

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.

Saturday 27 March 2010

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.

Friday 26 March 2010

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

Thursday 25 March 2010

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.

Wednesday 24 March 2010

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.

Tuesday 23 March 2010

Relief, biscuits and recovery

I am in a nice clean and comfortable hotel in London doing a terrible job at typing coherently so bear with me. My surgery was successful, the surgeons were amazingly gentle before (and I think during), nurses were perfect and anaesthetist was funny. I do not remember going under the anaesthetic whatsoever and woke up very woozy  but munched through 6 biscuits in no time and sipped my way through a cuppa from the Phil Lazarou Tea Emporium while the proprietor had me giggling at his magic show/tea making abilities. I am overall seriously relieved and that relief overrides any pain or discomfort. No sign of cancer cells in the glands how cool is that? I feel so chuffed to have another step towards total recovery over with and with virtually no tears or low moments except almost one when this morning my ipod broke, of all days for that to happen why today, grrrrr.
Will write more tomorrow but must rest now Doctor Lazarous orders and I am in enough trouble already from trying to do too much on my own, I think I am going to be an over ambitious patient, sorry Phil.

xxx

Monday 22 March 2010

Radioactive walking corpses

I am radioactive. There are very few days in my life I will get to say that, I hope.
Summary of the day...we found the Royal Brompton Hospital just round the corner from the Royal Marsden, but vastly lacking in welcoming environment and cleanliness in comparison, and made our way to the Nuclear Medicine Clinic which sounds as scary as it turned out to be. First doors open alcohol rub on hands. Second solid swing doors open and I want to turn right around immediately. The first sight that caught my eye I won't give detailed description of but lets just say there was no doubt that some of the patients in the room were hovering the grave and I just had not really seen anyone like that before in my clearly naive life. The second sight was a scan of the room and once again just like last time I was significantly younger than anyone who came in and out of there and again the last to leave. It is a strange and alienating feeling sitting there with people either looking at you like you should not be there or with total shock and pity yet not one small glimpse of relating to another person from across the room. I have not yet seen anyone under 50 in these hospitals I know there must be someone else like me going through this.

Right I get called in by a nurse and usual story wap them out put on a gown that would fit Homer Simpson after a soda bread eating competition. Then 'this will sting so breathe in deeply' ouch fuck you were not kidding lady. So I breathed in and held it and held it and oh my god when is this woman going to let me breathe out I start to let air escape secretly and she said nothing so I let out a little more and a little more 'ok breathe out' shit too late shuush. Then a lot of painful rubbing and I have stand around like a total fool circling my arm for about five minutes, not long right, when you are circling radiation around your armpit it feels like forever. So she wanders off and leaves me in this camera room circling my achy arm then after five minutes she returns and gets me to lie down. One kind of white rock taped to one boob, several uncomfortable frozen positions and a very tight metal plate lowered on me and then several xrays later and she has 'only found one node'. No idea what that means but she found one so that is good right, I suppose I will find out soon enough.
A doctor from the Marsden comes to meet me she wants me to consider joining in a research trial and I of course said yes, it is nothing invasive only extends the surgery by 5-10 minutes and will help them be able to make the surgery for women like me more productive and efficient. In the second trial my tissue will be sent to America and frozen and I figured I have been trying to get back over there for a while so I am pretty chuffed a piece of me will at least make the trip seeing as I am otherwise engaged.

I am tired and a bit headachy but not feeling too bad considering only a week ago I was pretty tearful and low with all the apprehension. Funny how it goes so unpredictably up and down like this.

So I will leave it there today. Not sure if I will be able to type anything tomorrow but I will try to get help to at least let you all know I am out of hospital, which I will be people I will be, and recovering well by teatime let's hope. Love love love xxx

Sunday 21 March 2010

How to scare a tabby cat in one easy step












Apologies if I am vague on the details leading to this event but tonight I found out what drills instant irrational emotionally scarring fear into to my, larger than your average, cat Monty Zoomer. Fear strong enough to make him stop eating instantly. The type of fear that leaves him trembling, fur raised and trying to hide from the world between the legs of the table until coaxed out for a moment to chew on an appetizing treat. This kind of fear can only be connected to events of catastrophic proportions. The cause however of this earth shattering fear is without any doubt the humming of Amazing Grace, badly. For scientific purposes we have tried several other songs over time and there is no doubt Monty does not have a musical ear as such but nothing quite riles him like Amazing Grace. So next time he gives me that look an hour past his breakfast time as if to say ‘you step one foot off the direct path to my bowl and I’ll take you down’ I will know what to do.


So London tomorrow yep yep. I am unnervingly cool, and I really do feel not too shabby. Something must be lurking in there somewhere just waiting till I require all my moxie and it will involuntarily break out and wreak havoc. I suppose I am simply trying not to think about it too much, just drifting along hoping that my theory that everything will not be half as drastic as I was first encouraged to expect will come true. If it doesn’t then fuck it no planning or preparation will make it any easier to take in or deal with. This is it now, we are here there is no going back. There is nothing anyone can do to change the next couple of days so there is no point obsessing about any of it just go and let it all happen, it will be over as soon as it arrived and then at least I can draw a line under the first stage of this horrendous year, done. Next.

Saturday 20 March 2010

Slow down

I cannot believe it is Saturday night already. One more day to prepare and then before I know it I will be on the surreal journey to London to get radiation injected into me WTF? I still can't entirely grasp that this is happening to me I feel totally normal and fine, except a slight cold and my damn period to layer the whole ordeal with extra lashings of fun. I sat for a few hours playing a computer game with two very giggly boys either side of me on the sofa. They both have totally unique laughs Reuben gets these infectious giggles, only in private, where the laughter rolls through him like an uncontrollable tiny rapid tremor where his body shakes and he is totally powerless. Where as Isaac practically bursts open with a phenomenal sound from such a small rib cage that echoes around the walls and bowls over nearby witnesses. He does not even remotely attempt to hold in his laughter, he completely embraces joy in everything he does, nothing phases this kid. It was so nice to hear them laugh so much and so so nice to be the instigator when lately all I feel I have given them is worry and anger. They floated off to bed in the best possible mood and now I am feeling so desperately sad to know tomorrow they will go and we won't see them for two weeks or more depending on how I fare with this whole thing. I will miss Isaac's constant flow of notes, love and hugs and Reuben's helpfulness topped by his amazing gesture today of mending a drawing I did him that he sadly, for him more than me, ripped up in fury. He pasted on a sheet of card, and very well may I add, all the tiny individual ripped pieces of the drawing until it is now good as new. There is no denying that he is totally capable of being the sort of boy that knows only too well exactly how to rub most adults up the wrong way but when he cares he cares like no one else and will stop at nothing to recover what he has lost or rectify a mistake he has made.

I don't want to really talk or think about the operation tonight, is that ok? cheers.

I have decided I am going to attempt to have flowers in my recovery house constantly. I really love how they make a room feel and there is something so fresh and alive about them, which is ironic because you have practically fatally wounded them and stuck them in life support water where they will inevitably demise but I will get some more and throw out the old ones before I have to consider that detail. I am going to get another jasmine if I get time, I had a beautiful flowering Jasmine for years that I brought in during winter, that Phil killed accidentally while I was away in the US, and I miss that plant so much.

Ooh the departed is on so that is me done. xx Gotta love Scorsese.

Thursday 18 March 2010

Super good news

I am so tired if I rest my head for even a moment on anything remotely softer than a rock I might sleep for a week so bear with me. So news first, well they did an ultrasound on my armpit for signs of cancer in the node glands and found there was 'nothing very exciting', (WHOOP) followed by the usual cautious story we can't promise there is not any trace of cancer as it can be microscopic....blah blah blah I totally stopped listening at the 'there is nothing very exciting' bit. So after yesterday I really did start to believe that the cancer was maybe in my glands, why else would they need to recheck so late in the day like this why else would the last radiologist have spent so long there and felt the need to do further checks. This morning I was far more rational and not so worried. I certainly had a some apprehension when I got in the room and laid down for the ultrasound until he told me and then I was absolutely chuffed and relieved. Nothing in the world could have got me down as I left the hospital to meet my bro for a late lunch, and then cake of course, well almost nothing except Phil who responds to my excited 'yay no cancer in my glands' high five offer with 'some lady set fire to a rabbit'. So we are putting that down on the list for 'appropriate and tactful things to say to anyone with cancer on a good day'. Oh Phil.

By the way for anyone who does not get the severity of it being in my glands well just quickly that means it can spread round the body faster not like in minutes or hours or anything close but it is harder to treat, or more aggressively treated, and more advanced.

Come on let out a small cheer go on just a wee one. I am so elated and I needed it I really needed it, I totally feel like I can take on this fucker now, bring it on. I found my resilience again, I think I had left it on the shop floor somewhere in the vicinity of where I had the conversation with the unnamed doctor who tells me they are concerned and need me in London in 48 hours to have a sample sent to pathology in time for my operation to be able to judge if the whole surgery plan needed rethinking. So that meant I could have been looking at 3-5 days in hospital and longer recovery and more damage with 0 days notice and now I feel sure I will be in and out like a flash. They did not promise this or even mention it but I am so happy I am going to run with it a while. Too confident? possibly, but allow this moment of naivety. I felt so stupid today for worrying yesterday but in hindsight there does not seem such a need to add so much drama with the way they tell you these things and details they fail to mention. No one said that it's a precaution no one said the reason it is so late in the day and had become so stressfully urgent is because the surgeon has been on holiday and not looked at your file until now. Geez people if you had told me that I would have only semi panicked internally not been totally knocked for six as I was.

Oh the relief. The cool thing is although it sucked to be scared by them in this way with all the urgent panic and messing around, I now have had two radiologists look at the nodes and one did a sample test which was clear and the other could not see anything of concern. So I can go into my surgery believing there is little chance it has spread and I should, fingers crossed super tight, wake up with no surprises. That in the long run is worth the last 48 hours of tension.
I am however going to be super pissed off if this cock-sureness backfires. But for now, in your face cancer HA. Whoopah.

Wednesday 17 March 2010

St Leonards on Sea, Breast Cancer Care and a swimming star

There was a great urge not to write the blog today. Because when everyone left me today I began to feel super low, because I am scared that people will get dragged right down with me and stop reading, stop caring. Because I know that I will hopefully pull myself together and be ok in a half an hour or so but you are left feeling whatever I put on this page for as long as you think about it and that seems unfair to me. So I have waited till I am at least not tearful, dressed and had breakfast (2.30pm lame huh) before writing anything.

I knew I would be like this as I got closer to the operation with not sleeping most nights, forgetting to eat 3 meals a day and somedays 2 out of 3 of them, and on hearing or seeing. purely accidentally, more stories about disfigured breasts, infections and the long hellish wait for the results and a nice list of death certificates that outweighs the survival stories I have collected, I know not statistically just unlucky for me personally this is what I have encountered. Anyway I knew it would be a tough time. I am just so very very tired. You can tell by the ridiculously long sentences.

But I braved it today I called someone. You know the professionals from Macmillan and sorry to say but the lady, I was unfortunate to get whilst I held in the tears, was totally shit. She told me to go to St Leonards on Sea for a support group and that was that 'sorry I can't help you more'. The keyworker from Brighton I met in my first appointment warned me for my age group support groups were a bad idea because everyone is older and sometimes had it for years and for someone young who is just embarking on this journey it is too hard to see and is not a recommended environment. But I did not give up, I braved it again and called Breast Cancer Care www.breastcancercare.org.uk. and I hung up. I called again panicked that I should not be bothering them and I hung up and then again but before I could hang up one more time someone answered and I will be grateful forever for that unnamed lady who spent 45 minutes talking to me about all my crap. She was one of those amazing cape wearing people that knows how to articulate exactly how fucking stressful this all is. So I was thinking that there are many of you who really genuinely want to help me and feel so useless because there is nothing anyone can really do and how awful that must be for you all, I would feel the same in fact I do feel very helpless and useless right now. Well if you can afford any time or money to promote or give to http://www.breastcancercare.org.uk/donate/ then do because you will keep them running so they can keep me happy and hundreds of other people like me. Just a thought. They also speak to anyone who is affected by the person affected, so you can call and talk about fears and stresses relating to me. Nice huh. I am going to give Phil and you all the number 0808 8006000. Save it somewhere. You might have a question that is eating away at you that you don't want to worry me with well you can call them. They are super nice. and won't try to send you to St Leonards on Sea. Which, sympathy if you live there, is the kind of place that might actually push me over the edge.

Bottom line is I am ok for the time being so please be ok too.

Oh oh oh and Isaac the fishman won his races in the swimming gala, about to see the beaming face arrive outside the door any moment.

Oh oh oh oh Monty. Quick Monty story...So picture the scene strange cat is territorially stalking the garden. Mont and I, we watch we wait. I look at Mont and he looks at me. I slowly unlock the door and said cat looks over, we all freeze. I open the door and with precision timing Mont shoots through and runs in the direction of the fleeing cat who he then chases him up the fence and away. Mont triumphant runs back and stands proud albeit a little shocked, he didn't think he had it in him and neither did I. The End.

Tuesday 16 March 2010

Brothers

Just a brief note to say something about Ian my oldest bro. As from my other entry you may well have read I did not take the phone call from Marsden today very well, it shook me just like it would shake most of you. I called Phil straight away and got no answer, he had forgotten his phone but I had forgotten too, so I dialled Ian, my brother, at work in London and he answered and I hardly got to say 'Ian could you...' and he cut me off with something like 'of course, of course little sister I will do whatever you need'. He was happy to leave work and meet me from Victoria take me to hospital sit and wait then probably hold me while I cry and take me for cake before getting me safely back on the train without a second thought, without a breath just, of course.

Didn't you know I have brothers? Yep two older brothers middle bro Paul, he and I were especially close when we were teenagers rebelling against whatever was out there to rebel against, and sharing secrets, ups and downs. A few years ago he came to the park when I cried with a broken heart and brought strawberries, wisdom, hugs and time. Oldest bro Ian who listened recently in London said all the right things in a different park when I cried with a broken spirit and brought many of the same healing ingredients minus the strawberries but replaced them with a yummy lunch after. Needless to say I am luckiest girl alive in some ways because my family love me so much and it's returned ten fold, of course.

London Thursday

So this morning I was doing ok even though yesterday was not such a good day. It was the sort of day that commenced with the picking up of far too many items of dirty clothing and discarded toys from children's bedroom floors and ended, after a nicely made dinner in a clean house, lots of help with homework and a trip to cubs, with Reuben refusing to go to bed without a snack after eating a meal fit for an obese elephant only an hour previous. He claimed we were being totally unfair towards him. It was past bedtime and my tolerance fuse had burnt out at 8pm exactly and I had been fanning it the whole day as it was. I got really cross with him I suppose with that and no effort for mothers day from either of them I just felt unappreciated and tired out and got really cross. So Poor Reuben got it both barrels, it was not monstrously unfair, but just not how I deal with him normally. He was understandably shocked. He got over it in minutes though and came down to apologise before going to sleep leaving me cleaning the kitchen with a sponge filled with tears of guilt. He bounced up to me this morning for more of the same hugs and make ups before skipping to school unharmed. I want to bottle some of that kind of Reuben resilience and save it for emergencies.

Anyway Today I got myself to Brighton, even managed to look half alive, I was planning to go to my last class this term at uni when the Royal Marsden called out of the blue and told me to come to London for an urgent appointment to do another ultrasound and take another needle sample of my gland because they are 'concerned' about something they saw on the images from Brighton. I feel instantly sick. So Thursday I am rushing up there for a unscheduled appointment to be poked and prodded again and not have a clue what will come of it till I go for my operation on Tuesday. They want to be sure they are doing the right kind of surgery on me. I mean sure I REALLY want them to be sure too but why wait till now did it not occur to them to check my file any sooner instead of totally panicking me in the already very stressful last few days before the op.
I don't know what to say I am scared it's in my glands and I think they are too.

I had just got to a place of being convinced this was going to go smoothly and had started to breathe a little relief in that the cancer has not spread or it seemed unlikely. Now all I can really deduce is that there is something obviously worrying showing up from the scans and mammography (and after the radiologist spent so long on my armpit in silence) but as for what that is another question. It could be some weird shadow that shows up and nothing to worry about, just unfortunate for me, or it could be some strong signs of well come on you know. So right, they are being careful and cautious and double checking so I should be grateful, why don't I feel grateful? I won't deny it, it is increasingly hard to be chipper when everyday you climb up those steps to even ground so you can walk around like everyone else out there and suddenly a rug is pulled or a massive hole appears that you didn't see until you fell right in it. and that phone call made me fall in head first.

I just want some good news. and sleep. I am going to take a sleeping pill tonight.

Sunday 14 March 2010

Screaming hangover

So I am just about awake, I know this because my eyes are open. I woke up with a dry seriously ulcerated mouth, a deep consistent rhythm pounding through my head, tinnitus in one ear, aching shoulders and the feeling that I have not slept at all. All the symptoms of a debaucherously good night of drinking right? This is how I wake up every morning now. So you may well think that I have gone on a permanent bender since being diagnosed but no, I just can't get a good nights sleep. It does not matter how much relaxing or sorting or talking or thinking I do throughout the day I still seem to be battling out anxieties in the night and wake up so many times I can't even recall, usually with dead arms from where I have been practising to be a contortionist in my sleep. It absolutely sucks it really really does. How are you supposed to have strength to face the day like this. I don't want to take sleeping pills I just don't, I hate pharmaceuticals drugs. I hear you muttering to yourself that I am going to have to get well used to them but not yet right, I have one more week.

For me another part of cancer that I find a huge struggle is the lack of control. I won't bore you with details but I have a strong need to be in control of my body and my life surely I can't be alone there. It is one of the most vital emotional needs I have. Cancer does not let you have control, the anxiety and adrenalin alone force you to act and cope in a very new unpredictable way and as for the medical and physical side I have to release all my control over my life and body and lay it in a strangers hands to do whatever they think is best and that I find exceptionally hard.

My cat has forced himself on my lap and is purring room shakingly loud but he has positioned himself half on half off so I have no choice but to support him with one hand, I am now one handed typing this could take a while, it appears I am not the only one who likes control. Monty though has healing powers, he doesn't know this but I could feel ready to blow and I only have to watch him sleeping to calm me down immediately it works to the same degree on Phil. If cats were a little more hygienic they should send them into hospitals. I do worry however that emergency surgeries would be delayed with the 'I can't go I have the cat' routine my mum used to do when she wanted someone to make tea for her. My mum must have been gutted when she realised her latest rescued cat is not keen on sitting on laps.

I think the big question of the day is where do you put the anger? Phil and I can't find a good enough answer to this one. It is embarrassing and difficult for me to admit this but I really lost it for the first time the other day. I promised myself if I am going to write this then I won't skip important moments just because they don't show me in a favourable light. I think the frustration, tiredness, anger and anxiety from the past 6 weeks twisted together into some highly explosive emotion that I never knew I had when Phil, as Phil bless him does, did something relatively, how shall we say, irksome. I took myself upstairs and screamed into the duvet so loud the cat hid behind the sofa for an hour and we both half expected the police to turn up checking on us, or at least it felt that loud. Phil who in four years had never heard me scream just said thank you, because he was relieved I had finally just let it out, no more controlling it all just letting him see what was going on under the calm surface of yeah sure I can cope with this. He cried (sorry Phil), I cried and believe it or not I actually felt a whole load better when I could forgive myself for doing it. I realised that everywhere I go I can't, because of my own dignity and tendency to hold it together, let it out when I need to and this is not healthy.
You see you want to scream because everything around carries on like it did before, when your life is so irreversibly changed and it feels totally unfair. You want to scream because you and everyone around you are powerless and you can't stop it or at least slow down what is about to happen and you don't feel ready to face it. You want to scream when your eyes sting, your brain slows down and your back aches because you can't get the sleep that will make this so much easier to deal with. You want to scream because you have cancer and you have no one to blame or be angry at, this unexplained mystery that chose you this year to fuck with.

But I don't feel like this all the time. I laughed last night, a lot. My friends, soon to be parents, Dan and Cat kindly had us round for snacks. cake, wine (not for me though) and trivial pursuit, which I am always on the losing side of so I am convinced that there is a pattern there somewhere, me. Cat with her very prominent bump was making Martha Stewart cupcakes in the kitchen and whilst gently hostessing as she does to ensure everyone has drinks and food and me to my surprise presents which were so so kind and lovely. She had chosen some fab very Brighton vintage style shoes which were amazing but bloody did not fit, I hate you feet, so she went off to get the receipt. I went to thank her feeling bad they were not quite my size and she is there pregnant tum leaning in the bin rifling through it like only Cat would. We burst into laughter, I won't forget her face and how funny she looked. Cat is amazing she sent me tons of distracting emails when I first found out and was the first person to joke with me about cancer in a well timed thoughtful way delivered with genuine kindness. Her husband Dan is the perfect compliment to her hostessing with the Dan charm anyone who meets him never forgets, it draws you in and makes you totally trust every word he says whilst he kicks your arse at Trivial Pursuit with an air of gentle smugness that is nothing but endearing. Bryony braved my driving to join us and rescued Cat and I in the kitchen just as we had managed to get a yolk in the egg whites and were making an emergency plan of baking action. What can I say, thanks for being wonderful and taking care of me...and sending me home with cakes. Love love love.

Thursday 11 March 2010

Before the storm

Apprehension is quite an overlooked state of mind or sensation. When there is something looming over you something dreadful, something fast approaching and about to happen, time seems to slip through your fingers so fast you can't believe that a whole week has moved on without you barely lifting your head to see it flash by. But when you are waiting for something exciting and incredible like travelling trip or party or new experience or payday! time just won't budge and you feel in stasis and frustratingly bored with every tick of the clock because you want tomorrow to come so much, and the waiting it feels like forever.

So where did all the time go? Wouldn't it be amazing if you could save up all the lost time, like roll over minutes, in a jar and then you open it when you feel you need a little extra here and there. You could sell your lost time to other people or if you were nice you would give it to terminally ill and the elderly (Dani I know you would). It just does not work that way though does it.
My calm relaxing two weeks is ticking by so fast and instead of trying to pretend to put it to the back of my mind I find myself obsessed with preparations. I am like that anyway with holidays and journeys etc, I just like to be organised and make it smooth as possible. However this particular journey has no google map or tripadvisor because although others have been down this very road many times before they felt, thought, acted and reacted very very differently to me. If there is one huge thing I have learnt from talking to different people and reading different stories is that no one goes through cancer in the same way. So anyone who wholeheartedly believes to have a solid idea of exactly how you are feeling because their friend or relative felt that way is unfortunately making a bit of a mistake. An understandable one though.

The one thing I find hardest to shake off is being told in so many words it's no big deal or it's nothing with that brushing it off tone followed by a sort of rewording of the 'stop making a fuss Sarah' sentence and from people who really surprised me...(it is no one reading this blog so you can breathe a sigh of relief there, you are all very lovely). So I felt really guilty like god did I make a fuss oh shit have I been a pain in the arse, have I lent on anyone and taken people for granted. But a few days later it occurs to me - hold on a minute I haven't called anyone in tears in the middle of night although nearly everyone offered willingly to take that call, I haven't forced everyone to suffer through detailed accounts of over dramatic trauma I simply wrote how I honestly felt in a blog, whilst still trying to make it more light than brutal, and said here read it if you want if you don't don't. and even though I know why the people who said these things said them it still leaves you astonished that anyone could at a time like this. Similar to one of the most shocking moments when someone told me, after I disclosed my diagnosis to them, to leave off the smokers because they fund the NHS. Words cannot.

People are people and they have anger bubbling away under the surface that seems to boil up without them even being aware of it I am sure I do it myself without my knowledge or consent. But I only hope I deliver my thoughts and feelings with a little more delicacy then these mentioned people. I think the best advice is be honest and if you don't know what to say do what two very dear chaps did and simply say that, the truth. That meant more to me than polished lines from a greetings card. They were so stunned and affected they could not find the right words. I totally totally get that.

So while I am preparing just to give you all the heads up again of where I will be and when. I am heading to London to stay in Kensington, yes I know, and going for my radiation injection, ugh, at 2.30pm on 22nd March. I am going for dinner with my bro and his wife hopefully and then attempting to sleep, which is probably as likely as a 5 year old sleeping filled with sweets on Christmas eve, only way more depressing.
I will go to The Royal Marsden, Fulham road for 7.30am (23rd) and from there it is pretty uncertain but I hope to be out the same day go back to hotel collapse sleep eat and then head home by train to Eastbourne the next day (24th) arriving for the afternoon where I will be staying at Phil's for probably weeks, at least two, so come see me when and if I am ready (and as long as you are not contagious). I return to London on 2nd April for post operation assessment and my results eek eek eek eek. I cannot stress the stress enough of this part so with tons of notice I am requesting as much distractions as possible please, especially as the days leading up to it Phil is back to work and I am a loner, hint hint. This appointment is also two days before my birthday that was going to be my 30th in England (really it's my 31st but of course I was away last year) but now might be postponed and I decided tonight if it has to be postponed then I should get at least three birthdays to make up for it. Fair enough? Although that does not in any way make me three years older. 2nd April I get results from the pathology on the lumpectomy and sentinel node biopsy, sounds cool huh. I wish it was cool. Essentially did they find any specks of cancerous cells in the glands or around the tumour they removed and if yes then shit it's chemo. If no maybe maybe maybe radiotherapy which in truth I have already decided in my head is going to happen and I am not so sure it is wise because that comfort zone is in the clouds somewhere, I even think there are care bears up there too, and it is a long long way to fall. You get me? probably not I distracted you with care bears. I used to love care bears I mean bears that care what a genius idea. Isaac had a teddy bear to share that he took everywhere with him at one point. 'Sarah would you like my teddy bear to share' 'Why yes I don't mind partaking of a teddy bear to share moment' Oooh way too late and I need to shut my brain off now I think, don't you? Night night.

p.s. It has been a good few days I am tired but smiling. I have eaten nearly all of the 'happy cakes' Laura made for me. I did in my head question what was in them to be labelled 'happy cakes' but then that also did not make me hesitate whatsoever in consuming the lot...before you get ahead of yourselves for your information I am legally happy.

xxx or xoxo - depending on what country you are from.

Wednesday 10 March 2010

Yawn

I have had a really nice day mainly thanks to Laura and then Agata keeping me company. : ). Too tired to write, will do a longer one tomorrow.

Tuesday 9 March 2010

Calmer

Even though neither of us slept more than an hour at a time last night, I do actually feel so much calmer. I have a new to me mattress thanks to my lovely Gran which is so much better than the one we had. The cat however quite likes the old mattress, he thought it would make a perfect high perch for his night cat watch duties. As said mattress became too unstable for his chosen purpose he used it to springboard to safety whilst it fell with a loud crash to the floor waking everyone in the nearby vicinity. So we bent it in half and wedged it in the doorway and Monty spent the rest of the night using it as an assault course which he assumed had been laid out for him specifically, while this morning the not so agile as a cat Phil Lazarou tried to smoothly slide past it and fell face first to the floor. Yes I laughed.

So the last draining appointment was days ago and the operation is in two weeks today so that is two whole weeks with only one little doctors appointment to go to on Thursday. Thanks to the kindness of Nigel and Carrie sweeping the boys off for an adventure and Phil's mum and Robin having us round I have actually managed to have time to do what I need and squeeze in the occasion nap on the sofa, ooh and eat cake.

When everything is all calm like now I feel sort of guilty like I am making a fuss over nothing even writing this blog because I look fine on the outside, well normal anyway, and feel ok so hmm what's the big deal. Then I remember ah cancer yes that old thing is sort of a big deal round here and I have still got it. Doh. But this naive bubble is quite comfy so if it's ok with you I plan to be drifting along in it for a few days at least. I am in Brighton till Thursday and up for seeing people, if people are up for being seen : ). Today is officially a good day. More than good, it's a normal day. Off to uni soon xx

Monday 8 March 2010

Anxiety

I am so unpredictable right now, I hate it I wish I could get a grip. Because of the build up of intense anxiety for month or so I can no longer handle the small things going wrong they send me into panic mode immediately, it is so annoying. It must be infuriating for people around me although in fairness I only intentionally show Phil that it's happening. I do however get a grip quite fast and calm down, but that damn adrenalin rushes through you like it's been waiting to race through you body at a moments notice. Then afterwards you just think rationally and calmly why the hell did I get stressed about that for.

Life you see throws all kinds of shit at you when you are already carrying enough to sink a ship. The boys are particularly tired and argumentative of late. Isaac has a cough to keep him and me up at night and make him plenty ratty and tired. Reuben has decided now is a good time to start waking up at 5am worrying that someone is in the very safe house with noisy central heating. Except last night he slept through. We all meet in our dreams every night on an imaginary dream island or planet somewhere and last night was safe and sound island. Cheesy yes but it works a treat.

So all my left over tolerance is poured into calming the tension as Isaac, who leaves the house after two hours of me chasing two boys (well actually three) around the house to get ready, steps in cat poo from the neighbours cat on our front yard and then proceeds to put his hand in it all when Phil needs to be on his way to work moving him from on time to ridiculously late and well and truly stressed. Result Isaac needs new shoes as cat poo is deeply wedged in grooves and he has broken the velcro anyway and he went to school wearing trousers that probably fit a 5 year old and some casual slip on trainers. I am heading back to Brighton tomorrow for uni and appointments and I am feeling so worried about leaving Phil to deal with all this.

We were rescued yesterday afternoon when I had lost all my energy by Phil's mum and Robin for a wonderful dinner where the boys didn't complain or argue (much) and this followed with cake of course, doctor's orders. The leftover chocolate roulade or Mr Yummy as Isaac renamed it came home with us and I am not sure how to break it to my two chocolate loving fellas (Phil and Isaac) but I had the last piece for breakfast and then sat there very full and pleasantly nauseous feeling a tiny bit guilty.

Sunday 7 March 2010

The full ugly picture

The nastiest cruellest thing about cancer is not that it's potential life threatening. That is what we all automatically associate cancer with isn't it? Death. That is a majorly worrying part of it no doubt about it, but actually not the part that kicks you in the teeth when you're down. It's all the commonly unknowns that make cancer a hard fight to fight, all the side effects, the torturous waiting, the tiredness and inability to function, the incurable infection 25-35 percent of breast cancer patients get, the fertility issues, the impact on your loved ones, operation recovery period where you can't do anything but think about your impending results whilst needing to be in a clinically clean infection free (therefore child free) environment, the adrenalin that steals your appetite replacing it with nausea and sends you into a state of anxiety you never knew you could reach as a relatively calm person previously. That is what sucks about cancer.

So the best thing hmmm you know me I like to try to find a happy balance but this is a serious challenge. There is nothing officially good about cancer but if pressed to find something we can convince ourselves is a benefit then well; this experience does show you how many people actually entirely love you and that feeling is totally amazing and well needed to muster strength. It gives you instant clarity of all the things that are vital to your existence and what you want from life and some people go a lifetime unsatisfied by not figuring this out. It makes your appreciation for every good moment or act of kindness in gifts, messages and visits totally genuine and finely observant and detailed. Of course what wins hands down I think you will agree is that you must eat cake. Holly brought me round an array of Easter style cakes and I sort of promised to share them with two small children, who were licking their lips as they glared over the rim of the box, and ate my way through the lot. oops. I did not even share with Phil although I did offer, perhaps he wanted no part of this crime. But I do have cancer so really if there is a time you can steal cakes off small children this has to be one of them.

I am conflicted in my head about the kids, we have not told them it is cancer. So far we have said that I am ill and will have an operation and will take quite a long time to get better but I will and they can help by being tidy, good luck with that you say. They have no real understanding of the severity of course not like when you tell an adult who no doubt has come across cancer before so physically trembles as the word falls from your lips. The kids look at me and see that I am fine and that is all that matters to them. My worry is that when I need them to be clean very clean will they be able to do it and what will happen if they can't. If they don't know how serious it is then how can they remember or realise how important it is to keep clean and not infect me in my operation recovery time and during treatment. I don't know I just don't.

This is the hard part too, I have two weeks to prepare for this operation and make all the necessary arrangements and decide where to be after and what I will need and think about how I will cope after Phil goes back to work after the first week as I am not allowed to lift or do housework etc and I have to be clean clean clean. This is when my family rule each of them have taken on a task and run with it, it is hard though leaving your fate in so many other people's hands. You see what I am supposed to be doing is eating well, resting and relaxing. Some hope huh. I also have a first draft of a 8000 word dissertation due in a week or so and I have written all of 2 pages. and of course not to mention the other two piece of work and exam preparation. Eek.

Friday 5 March 2010

Sleep

So it took me till 1am to sleep but I slept a nice relaxing not restless, I think, night's sleep. I can't emphasise enough how great that is. The world looks and feels so different right now than it did yesterday. When the anxiety is high because an appointment is fast approaching I wake up 2 or 3am without fail and won't get back to sleep till 10 minutes before having to get up. But now there is nothing major for two weeks I know I can rest and relax and try to just get on with life. The irony is that last night my dear house mates and my dearest polish friend, over a few glasses of wine, managed to discuss spider infestations, maggots embedded in legs, suicide, fires, a touch of cancer (mainly Agata's idea of a bed time story involving lung cancer patients, love you sweetie) and Katie Price and I still got the best night's sleep I have had in ages. Thanks ladies for being more than happy to be with me whatever my mood might be.

Anyway yesterdays news is now in the past and there is nothing I can possibly do to change it so I am going to let it drift away for now. I know my date for the operation and I know where I am going so I just need to book hotels and all that and find my slippers.
Fingers crossed I am seeing my lovely Holly today who is full of blue team bump and hopefully has lots of squeezes and news to tell me about her little July bundle. I then get to squeeze the boys later and they are squeezable indeed. xxx

Thursday 4 March 2010

Fertility - Not a happy entry this one

Skip this one if its too much. It is not good news or light in any way.

I went to discuss the fertility issue today with a chap in Brighton. Right deep breath, Chemo does not destroy the chance of having children entirely in most people, but it reduces it and sometimes significantly so there is still a chance my fertility will return but I am left without choice but to be having children later than I wanted so mid to late 30's if everything works out. If I dont have chemo radiotherapy does not alter fertility but I am still not advised to have kids for at least two years. The scariest piece of news today was it is so risky for someone with cancer to be pregnant because pregnancy hormones accelerate cancer growth and if I was able to fall pregnant in the next two years the only real option is abortion. So if that is not going to terrify you from ever having sex I don't know what will! I am pretty damn annoyed no one told me sooner because such important information should be top of the list in my head. People with cancer do not need any extra stress and abortion etc and the risk is a situation that can be prevented from occurring if people knew. So if you take anything from this blog take that piece of information and get it out there.

As for me I could take fertility drugs during chemo to keep my ovaries possibly working but the drugs reduce the chemo's impact on the tissue and raise the risk of it not working so hmm no doubt here that option is not worth it. I have to return in a year to the specialist and get tests to see what my chances are.
No freezing eggs because they use female hormones to induce your cycle to retrieve the eggs and hormones as I said make cancer grow, it is not very successful anyway.

But here is the shocker no IVF treatment after because they won't fund it for me as Phil has two kids already oh unless I have thousands upon thousands of pounds I want to spend with no guarantee it will work especially in my situation. I found that part the most hard to swallow, surely discrimination springs to mind here. I have enough tolerance, strength and love to go through the highs and lows, the strain and hardship of taking on someone else's children, because no matter how much I love them dearly it has been a rough road indeed with a high personal cost, and I am now told I don't have the same right as another unattached woman in my position. I will support the NHS in many many ways but this I abhor and it has left me stunned.

The real harsh part is that they break this to you 11 flights of stairs up (lifts were full of push chairs) in the ante natal clinic. I just think it's incredibly insensitive.

But there is no point thinking about this for the next year because it won't change the future or even influence it so deep breath and let this go for now. I only wish it was so simple.
I am sure I will be more chipper tomorrow just a tough couple of days taking its toll right now.

xxx Love Love Love

Yesterday

So there I stood in Kensington in a haze of busy pedestrians cars and buses sickness filled my stomach and tears flooded my cheeks. It had been a rough day.

It had been a rough day not because I found out anything worse than I already knew but more because I had sat in so many different waiting rooms holding it together since we arrived 5 hours before while different people told me different news some containing words like 'life threatening' and 'incurable' and others said nothing at all which was sort of worse. So, details before you explode with apprehension. I am booked in officially for 23rd March (unless an earlier date comes free) to have an operation in London. I have to arrive the day before and have an injection that is called nuclear something something. I got lost after they said the word nuclear. So it's essentially radiation injected into me. It works to help the surgeon trace the nodes (armpit gland things) so he can get a sample of them to test for cancerous cells. But it not always works, so if not he has to use a blue dye to trace them instead that hmm turns out is 'in rare cases life threatening'. What? So let me get this straight I already have one life threatening thing inside me and you want to put another one in. Go on, sure, why not! Fuck. But yeah yeah it might not happen. You see being a rare case already makes you question if you have luck on your side, so when they say in rare cases this dye reaction happens you freeze, you feel sick.
They couldn't tell me an answer to the big question; Do I need actually need chemo? They cant tell you that until they go in and see what is there and test the area.

If I am super lucky, fingers crossed I am, it could work like this: First the operation, they remove lump and gland sample from my armpit (they are called lymph nodes like some cool mythical creature). Then while I am under general anaesthetic they test the nodes and if they are clear at that point they won't take anything more. I come round and will be let out of hospital relatively fast and recover for four weeks, of no housework or lifting, before treatment which will still be chemo probably but maybe maybe, fingers crossed so hard, just radiotherapy if it is feasible and the cancer is small enough.

IF I AM UNLUCKY they test the glands and find cancerous cells they go back in and take more tissue and glands away and I won't know till I wake up and then I am in hospital for 3-5 days and longer recovery expected and definitely chemo. Followed by radiotherapy too.

Radiotherapy turns out to be pretty damn shit too not quite so bad as chemo but still horrible and all the while I was believing I need chemo I had not even given any thought to radiotherapy. Especially after Phil said oh they just force you to listen to Heart fm 102.4 for hours which is bad but you'll get through it.
Radiotherapy is far from fun I will have a red sore burnt patch where treated area is (treated is not the word I would use) which ages the skin and leaves the area solid, so over time my breasts will appear lopsided. I don't know what to say other than to me there is nothing funny about it at all. It makes you sick very sick and I will have a prolonged time in hospital rather than 3 weekly visits. and although they have to tell you the raw truth there is a chance with radiotherapy that it effects the organs underneath and I will leave you to figure out the rest. So essentially they will tell me after a 10 day wait post operation that my not too distant future is either really shit or just plain shit. But you know me, I will be ok whatever happens. and I have convinced myself that having bigger boobs has got to help as there is more tissue to protect the organs surely so yay for big boobs today.

Oh and the other news is that you can get an incurable infection that swells up your arm after the op. yay. piss.

First night on my own tonight, no Phil. So wine. friends. film. cake.

ooh and I had my first ECG yesterday, which was all fine in the end when I calmed down, in a pre operation assessment and I totally bonded in my head with ET because the only time I had seen that many wires attached to anyone was during that film.

ET and me, we relate.


Tuesday 2 March 2010

Friend and family appreciation



Although within my current vocabulary there are no words with enough intelligence and power to fully convey the appreciation and awe I have for my friends and family right now I will have a go anyway.

Firstly I would not be who I am without every single one of you. If you know me well you know that I believe wholeheartedly that a personality is made up from everyone they have been in contact with and everything they have experienced throughout their lives. You are all kind of like integral pieces to my puzzle ooh no actually like integral ingredients to my cake yum.
I find it beautifully overwhelming how much consideration and love you have all given me over the past month even with your own struggles and immensely busy lives. Thank you will never contain enough emphasis to show my full appreciation for all the cards, letters, presents, emails, phonecalls and smiles I have have received.

I don't expect or demand anything from any of you except this one thing...do not feel guilty not for a second, well hmm unless you just trod on some poor child's pet spider or something, but with me I mean do not feel guilty. You absolutely must get on with your lives I certainly will be too as much as I can, I will shout when I need help and I know if you can at the time be there you will be there.

Ok ok no more sentimental crap. I get it I get it, I will try. Nooo one more thing come on...I would be here far too long trying to list off the kind things people have done for me lately but just for an example today a wonderful beautiful teacher/yummy mummy I know gently told me off so I promised her I will try to stop worrying about Haiti and focus on me for a bit too, ha. She called at the right time and said all the right things, which I am eternally grateful for. Then I returned home and a parcel is delivered and I hope this other stunningly fabulous friend will forgive me for sharing it because it is a totally thoughtful and lovely gift. Next I opened a card all the way from my second home in America. Words cannot. I then pop online and there is another one of you lovelies offering brownies and more importantly your time followed by my super chum Holly planning a meet up and lazarou.me checking in quickly to make sure I am ticking along.
My mum and dad would shrug it off and say it's their job to care for me but I see it differently, there is a limit to some people's love because of the past, because they don't know how to care or show it. But my mum and dad have no limits to their love, it is completely unconditional, gentle, forgiving, generous, consistent and tolerant. My aunt who has been on this very road herself has reached out a hand and pulled me close. But today I can't help but single out one person in particular without in anyway devaluing all others and that's Phil's mum who really is a truly wonderful, caring, genuine person with a unfathomable gift of total gentle kindness towards everyone around her.

I am in awe of all of you.

Monday 1 March 2010

Rollercoaster

You would think this experience would have taught me within the first day the brutal lesson that life, as you recognise it to be, can totally fold in on itself with relatively little warning if any. Yet I still wake up, like today, feeling like I have a steady grip on my world and everything is going to head in a specific direction for the duration of the day, and I believe it I totally convince myself. It is of course simply not the case. I am now sitting here sick with fear again wanting to hide till its all over when earlier I would have stood up short and straight and laughed, in a Rhett Butler-esque tone, directly in the face of cancer.
Hold that thought. just as I felt my heart sinking and the gloom had begun to set in, my cat Monty Zoomer a.k.a. Montezuma (as my brother once said, all cats should be named after dictators) decided to become feral and run around the room claws out, up curtains and sofas over Phil's legs, who screamed like Scarlett O'Hara coincidentally, and across tables and chairs until he chased his tail around a chair with wild black eyes, guffed and fell asleep. Feeling down? nah what's the point.

Right. Since reading that I need to eat cakes and butter on the Royal Marsden website I've been having hot cross buns covered in a enormously generous amount of Irish butter, you know kind of like a M&S advert, and then maybe later potatoes in a similar dairy coating, followed by cake and more cake. In truth I am so scared with chemo that I will lose tons of weight I figure I should fatten up while I still can. Phil on the other hand is fattening up too but is worried that they won't let him have a little chemo to slim down again. I do also have a theory that when I get over Cancer I will probably have a heart condition. Butter is sooo nice though isn't it.

Also Phil told me not to watch 'Beaches' which is on TV soon. Subtle Phil subtle.
It is Isaac's birthday tomorrow he is 9 I can't believe it, I met him when he was 4 and wearing a Halloween skeleton jump suit. He said 'would you like me to show you how to play spiderman?' and I fell in love instantly. Reuben 10 came home from a party later and sneered at me for the next few days only refraining from this to make polite remarks like 'why are you still here?' or the classic 'you are not my mother'. It took me under two weeks to reach him. He came in sat on the sofa I was lying on laid down and hugged me for what felt like hours. I never give myself enough credit as to how important I am to both of them, and them to me. Really don't want them to watch me go through this and I wish there was a subtle way to have cancer. Oh good title for a book - Sarah's fantasy books 1. How to cure cancer with cakes. 2. The subtle art of cancer. 3. 10 easy steps to stop anyone suffering around you with the use of pipe cleaners and paper mache.

Micmacs

So it took an eccentric french film yesterday (Micmacs) to make me finally feel normal, albeit briefly. Or maybe I am giving too much credit to the film, which was brilliant. Perhaps in hindsight it was Isabel and Simon who kindly accompanied us to the film and drinks after. Because somehow they managed to not have that look of abject fear a lot of people unwittingly have when they see me for the first time. Or that awkward frozen moment when they don't know what to say, because in all fairness what can you say. Umm erm get well soon? maybe best of luck? It is hard I know, I really do. What do you say to someone who has no solid idea what will happen in the future, and has that thing that everyone fears and no one ever wants to have. Oooh feel that shudder round the room. Phil and I even changed the name into smancer (small cancer), just to take the weight out of the word while we wander around the streets and shops trying not to dose people up with too much reality while they buy things they don't need.

I said to Phil the other day and this may not make sense to you but I don't fear cancer now I have it. I will be the first now to admit that I have had moments in my life lying in the dark, just like a lot of people, worrying about dying or getting cancer or both. Only for a brief moment of course and then you block it out and kind of mentally shake yourself. Now it's happened, not the death part I am still alive don't panic, it really is not as bad as you expect or imagine. Hmm well after the first few days anyway. I think it is not so bad because help is at hand, clever people out there are going to save you and you know they will do everything in their power to help you survive this. I keep imagining what it would be like to be going through this in a country or place out of reach of medical help and no NHS, that is the stuff nightmares are made of. Then I think of Haiti and now Chile too and just feel kind of bad for even making any fuss about my smancer.

Anyway go see Micmacs. or if not save the money and give it people who need it more than you in Haiti. Chile is in need to but please read this first before deciding where your aid travels to http://www.dec.org.uk/item/428.