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

Wednesday, 26 May 2010

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.

Sunday, 23 May 2010


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

Friday, 21 May 2010


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.

Monday, 17 May 2010

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.

Saturday, 15 May 2010

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.


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

T. R.

Wednesday, 12 May 2010

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

Tuition Fee Loan
Amount applied for

Amount you may be entitled to

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...
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.

Saturday, 8 May 2010

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.

Sunday, 2 May 2010


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.