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, 17 August 2010
Also there is still this unrelenting fear lurking in the pit of your stomach that seeps into your dreams that they didn't get it and it will return...and only time will tell, not even the doctors can promise you for sure. I have been thinking a lot about the sort of angst we all have against life for being so unfairly balanced, we know it is totally random and yet you cannot shake off the feeling that someone somewhere picked you out deliberately and could pick you again. Ridiculous yes? and yet you find yourself still feeling the injustice when you hear of anyone having to go through this twice, anger with no destination.
Meanwhile my skin is totally healing so well it will look as though I never had rads in a week or two but it did make the scars a little more prominent, you win some you lose some eh.
The real drain is the fatigue, it just sneaks up and wipes you out leaving you numb and unable to get off the sofa if you tried. It has not been the easiest summer already so that does not help but I am told in time it will fade out.
I suppose I wanted to check in quickly as a few people mentioned I had not written anything for a while and in that case I never really said a proper thank you to everyone who came on this journey with me and the stragglers who are still there, it is really touching that even when I had given up with this blog you hadn't.
I am off to walk around mountains for a week with Phil in two days, ah who are we kidding we are off to sit in every patisserie we see.
Take Care x
I will left a little note after September and October check ups.
Thursday, 22 July 2010
I went to London today for a check up and all is as expected nothing unusual so no news is good news and they are happy to assist with issues I have from side effects to these damn hormone tablets.
I have to go every 3 months for the next year and then it slows down to 6 months for the following year and then again to annually after that so not half as bad as I had been told. In one to two months I will have signs as to whether I have a reaction in my lungs to the rads, as the radiation can kind of burn them leaving you with a sort of chest infection type reaction. Here is hoping I am experiencing the last of the effects from this evil stuff.
As for how I am well I would gently warn you as someone did me that once it's all over and settling down you have no appointments to focus on as the next one is far away, and all of a sudden the experience catches up with you and you gain the magnitude of it all in clear light of day. It's overwhelming but just part of the journey and sometimes you feel the most tired when you arrive where you have been trying so hard to get to.
The unnerving part of having cancer is when it's all over you have this sneaking suspicion it's not.
Wednesday, 14 July 2010
Well 4 doses to go. Burnt skin, no bra allowed, red, itchy, painful, tiring but it's all bearable and I feel so close to the end it is hardly bothering me now. I am too tired for words mind, this is mainly due to Reuben having a stint of major behavioural problems that I now feel drained inside and out and his timing generally sucks, this occasion being no exception. Give me a months rest and I would be willing to take on the worse behaved 11 year old in the world but right now nope I have no energy and it is becoming very hard work for both me and especially Phil who is left to cope when I go to Brighton to rest. So I am pushing myself too far this week and driving back and forth every day to help Phil deal with his temporarily explosive child in the vague hope something's gotta give and we need it to be his stubbornness before our sanity. Just need a break, if anyone finds that pause button we all dream of let me know please.
Holiday in France 19th August oooh so that is 35 sleeps right. Just over 4 weeks and we can do nothing but think about where our next crepe is coming from.
Tuesday, 6 July 2010
Something else I have noticed is if I begin to show any signs of feeling at all sorry for myself regarding radiotherapy I find the occasional reaction to be 'well it could have been worse at least you didn't have chemo'. People have an inherent need to gloss it all over and take the weight out of suffering by seeing the sunny side instantly but this sometimes brushes aside what someone is feeling. I do it too and now I am so determined not to, it is like positivity tourettes.Yep I know I am lucky in a way but allow me a little time to grieve or express the shittiness of removing all normality from your life while you are travelling to hospital everyday in the heat (when you are not allowed in the sun or your skin will fall off) to lay tense and still while they beam radiation into your chest right next to your lungs making your skin sore and stealing all your energy. It could be a lot worse sure but it could be a lot better. Oh and I read macmillan yesterday in search for a moisturiser -
Erm perhaps mention this one before hand, I mean it would be nice to know! Ok sure not much chance but I would at least like to be aware of it.
I went to see my friend run the race for life on Sunday. I didn't see it coming but I was only there 20 minutes before I was in tears, cunningly disguised under my straw hat and sunglasses. It was so overwhelming even Phil said he welled up in 5 minutes, you find yourself reading all the peoples messages to lost loved ones on their backs and right now it was too much. But I am still glad I went anyway.
Oh crap I gotta go I will be late otherwise. Hope everyone is well and happy.
Oh on a good note I am officially an Auntie as of yesterday to Matthew Bolland a healthy baby boy, I hope mum is resting and recovering well xxxx
Wednesday, 30 June 2010
Sending love xxx
Saturday, 26 June 2010
Radiotherapy right. Yeah it's not fun but it's not so bad really.
First day they do the usual scaremongering "occasionally some people find their skin around the treated area blisters and slides off" and "we don't recommend wearing deodorants as it may react with the radiation". Oh great.
So they aim and localise radiation with a machine directed at an angle to miss your lungs for obvious reasons. The radiation, which is broken up into daily doses over 4 weeks to not over expose you, kills the cells in the breast (and any cancer cells hopefully) and therefore the skin which is the first place it meets will potentially become damaged like bad sunburn I suppose. It will make the whole area solid and firm and maybe give me lopsided boobs in a couple of years. It turns out after interviewing a few female friends, who obviously won't be named, that many women already have lopsided boobs and I was pretty damn lucky really that mine are even or were anyway. Some women say it evens them up so that is cool for them I suppose.
I admit I find it hard to be glad or appreciative of what it is doing to me, it feels so barbaric to kill the good cells while my body fights and uses all it's energy to rebuild them. My poor healthy cells. Also as silly as it sounds the word radiation rings bad bells in my head and unnerves me from growing up with Chernobyl and hearing about the radiation poisoning and what it did to those poor people over the years after the disaster. I suppose that is the first major disaster news story I remember from childhood and I strongly remember that radiation was bad and it never really left me.
As for the actual event well first day took longer with waiting and a broken machine issue but it was over relatively quickly once they got going. Pretty much you go in get in gown, lay on table thing, wap boob out, get drawn on, lights out, get positioned, lay still, they leave, you breathe, 4 minutes of a machine moving around you buzzing at you and a slightly warm sensation and it is over you are free to leave and enjoy the lunch your mum buys you in some cool Brighton cafe or like yesterday the lunch your very sweet compassionate friends have made for you at your house.
Second day I went in to reception, hello, went to sit, "Sarah Bolland", off I pop, strip, lay down, drawn on, positioned, buzzzzz, out. all in five minutes. It is weird though how you lay there breathing heavily and I can see my chest rising and falling and I am wondering if I am messing up their positioning because I am breathing so heavily because my heart won't stop racing damn it. They are fantastic people and so professional in every way you can't help but admire them and it is over so fast compared to other treatments. and yet if given the choice I would rather not have to walk forty minutes to hospital and 40 minutes back in the midday sun to zapped with some scary stuff that makes peoples skin fall off, thanks all the same.
Still 20th July end date 'last treat' is what they call it I wonder if I will get a lolly xx
Then 22nd July one tired post radiotherapy patient is off to the Marsden to see my surgeon about my boobs and thus starts the five years of 3 monthly visits until you get the official all clear, the reason they do this is sadly because for some people the bastard thing comes back, well not me thanks.
Tuesday, 22 June 2010
But I am fine really I am, bored but fine. : ) Hope you are too xxx
Wednesday, 9 June 2010
I have been fine up until yesterday and it totally spun me out that all that can unravel without notice just because someone tells you you will be in a dark room for up to two hours and get your boobs tattooed.
Reality of it is it was fine, a breeze might be going too far but it was fine and over way faster than I was told. I donned the flowery gown that has sexy poppers for easy boob access and laid down on the examination table which swings around the room faster than you would expect and then three different people drew on me and took x rays and photos of my boob. All in a days work really.
The purpose of today was to get my rads schedule, remember all the cool kids call it rads, and to be aligned ready for the actual treatment which consists of 3 weeks every weekday of radiation to the whole breast then one week of direct targeted radiation to the cavity where the tumour was, which apparently has titanium clips in so they can find it, news to me. The reason for such intense aligning is to ensure that they don't effect the lungs so they come at the breast from an angle to sweep across it and just under the rib cage but hence not touching the lungs.
Rosie came with me kindly and distracted me in the waiting room where waiting feels like a punishment of the worst kind. Then we went and had lunch at the Kemptown deli and I fed my latest addiction of haloumi.
Tired now so signing off xx Night.
Tuesday, 8 June 2010
I am also apprehensive about this business of laying still with my arm up in a sling thing for up to two hours and being tattooed in two places with indian ink, I get a feeling this visit will be the worse one in some ways. It will be over soon, it will be over soon. Gulp.
I am fine though I hope you all are too xx
Wednesday, 26 May 2010
Sunday, 23 May 2010
Anyway go enjoy the sunshine people xxx
Friday, 21 May 2010
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
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
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.
Wednesday, 12 May 2010
Tuition Fee Loan
Amount applied for
Amount you may be entitled to
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
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
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.
Wednesday, 28 April 2010
The more you learn the less you know. I think I finally get that concept now, I have only gone moments really of my lifetime with limited use of my arm and I totally hate it. Imprisoned in long sleeves I am desperately wanting to wear summer dresses, go swimming, drive, lift things, play tennis with the boys, pick them up and swing them round the garden, cuddle the cat, cuddle phil, cuddle strangers, well not so much. Most of all not have to fear and think about this damn infection. But there are other people wheelchair bound or paralysed who never have or never will again have use of their limbs and I am not one of them so how lame am I to complain about my lot. My heart really sinks when I think about what quality of life some people have had dealt to them and yet many of them refuse the disability life handed them and live a full active life. Gotta try to take a leaf from their books, it is hard to when your still in cancer stasis.
I also think I have an idea of how the loss of status and meaning can pull you under and lead to loss of motivation and that if you find yourself unemployed or unemployable life can be a prison. I know that I only need to keep my head above water until October but that means keeping busy with no purpose whilst recovering then attending radiotherapy treatment and post treatment appointments with rent and bills that still need paying for five and half months and then who knows. If I would be able to convince someone to employ me right now, not bloody likely, I absolutely dread the idea of working in a soul destroying job I hate, I just can't face it.
It is not that I am depressed in a I hate myself and feel like some self destruction sort of way no I still like me, very much, and that is the infuriating part. I want to retain or get back to being me and living my life not the one that has temporarily been imposed on me. I am just worn out, spent.
Anyway can we just take a moment to try to understand why we are reliving the eighties? Again. Well again again because I swear we relived it before I went to America. I was thinking the other day that when the kids grow up they will relive the noughties and within that they will have to relive most decades in the twentieth century. I have no idea what they will be wearing I can't wait to see what outfits Reuben will chose. We sent him upstairs once to get into some summer clothes and he came down wearing a smart ironed Marks and Spencer shirt all buttoned up to the collar and some stained skanky football shorts, the kid has got his fathers fashion sense.
I had tons I wanted to tell you about today and yesterday but I am sleepy now so I am going to sign off.
Monday, 26 April 2010
Altogether though the main thing is Surgery and Radiotherapy are localised treatments for cancer so they concentrate on one area alone. Now if like in my glands a small piece of tumour broke away into the bloodstream and I did nothing general to treat it who knows where it would end up. Chemo and hormone inhibitors are the only way to ensure or should I say at least increase the chances of removing and preventing any escaped cells or fragments of cancer around the whole body, you just gotta do it.
Saturday, 24 April 2010
- Hot flushes.
- Night sweats.
- Vaginal dryness or irritation.
- Loss of sex drive.
- Indigestion or mild nausea.
- Periods become irregular or lighter.
- Periods may stop while taking tamoxifen, often because the menopause had occurred naturally or other treatments such as chemotherapy have caused an earlier menopause.
- A decrease in the strength of the bones in pre-menopausal women (this is not thought to affect post-menopausal women taking tamoxifen). See Osteoporosis booklet.
- Less common side effects
Because of the risk of blood clots, it is especially important to tell your GP if you have any symptoms such as a swelling or pain in your leg or a feeling of shortness of breath.
- Eye-sight problems.
- Hair thinning.
- Increased risk of blood clots (although the overall risk remains low).
It's important to tell your GP or specialist if you have any unexpected vaginal bleeding, discharge or pain.
- Thickening of the lining of the womb
- Polyps, ovarian cysts or, very rarely, cancer of the womb
Common side effects
- You may develop a skin reaction during or after radiotherapy to your breast, including redness, darkening, tenderness or itching of the skin. This will tend to begin 10 to 14 days after starting treatment. Your skin may peel or flake as treatment goes on, and there may be a red, sore, moist reaction.
- You may have aches, twinges or shooting pains in the breast area. These are usually mild, but can go on for some time after treatment is finished.
- If the treatment area includes the central part of the chest, a small area of the oesophagus (gullet) can be affected, causing heartburn and discomfort. You may also experience loss of appetite and sometimes nausea.
Less common side effects
- Radiotherapy to the breast and armpit can cause tissue hardening. This is known as fibrosis and is caused by a build-up of scar tissue.
- Sometimes part of the lung behind the treatment area can become inflamed, causing a dry cough or shortness of breath. This usually heals by itself.
Friday, 23 April 2010
Full story tomorrow.
Wednesday, 21 April 2010
and how am I feeling? well fine really. I can't feel most of my arm it's not nice but not totally unbearable more just uncomfortable. I am loosening more everyday with the exercises and general movement. Not on painkillers today yet whoop. Pretty good huh.
So next...well I go for 12.15pm on Friday and listen to what they have to say. I then reckon they will tell me I need to speak to an oncologist about the possibility of chemotherapy, side effects and pros and cons and then the decision essentially is up to me. (Gulp).
Meanwhile I sit in intermittent gentle sunlight, paint brush in hand after editing my favourite half written novel, music on in the background and well wishes flowing in from all corners of the earth and it keeps me sane. Thanks.
Monday, 19 April 2010
Sunday, 18 April 2010
Perhaps I glamorise it in my head but I really don't believe this is a job you do because you need cash or because you can't find anything else I really can't accept that they take the job for any other reason than genuinely wanting to help out with other peoples lives. Cancer hospitals like I said before are a grim place and that is the nature of the beast, it is not the facilities or staff that give the place such a dark cloud it is the cancer. They will never become a fun place to be and that is that. So to work in one of these places willingly and stride in everyday for 12 hours (they work 3 and sometimes 4 days a week to compensate) and deal with everything they see and hear is just unfathomable. It totally demands, and quite rightly so, extreme respect.
They admitted to me that if you are mobile and can move around you tend to be neglected and that sucks for me when I got overlooked but I had to keep remembering myself that poor Linda or the others who are completely disabled in bed need their precious time so much more. When I really needed something they were there in a super hero like flash. They did not stop for one moment and were so so busy day and night, nothing was too small a task and they never complained or looked even remotely annoyed. They even shared their jelly beans with me. Nurses of the world you totally rule.
Talking of amazing people my amazing and beautiful best chum Bethan Hall is running Brighton Marathon right now and she is raising money for a sweet little girl called Erin Lodge with cerebral palsy and she is also running for breakthrough breast cancer (me). Sorry to ask for money again so soon but if you can give then give...
I also have a lovely friend who is surviving (just) on a quid a day for 30 days to support vulnerable or homeless women's project through St Mungo's charity in London. http://30days30quid.blogsp
By the way I am doing much much better this morning, yeah yeah I still have a very sore shoulder and my tummy feels like someone has punched it for two days relentlessly but I also have my cat, sunshine, nice food, Phil, chocolate, my clothes, blankets, television, peace and quiet.
Love love love xxx
Saturday, 17 April 2010
I wasn't going to tell you out of some strange British propriety and embarrassment, then it struck me how ridiculous we are about poo. We would rather go on Jeremy kyle naked apart from a pair of spanking new Reebok classics than admit, even to our own family, that we actually poo although it is something each and every one of us does, hopefully for you, everyday. So although I have poured out each and every inner thought and fear onto these pages I still held back and had second thoughts admitting the troubles and torture of having diarrhoea in hospital. Then I thought well of course you would be absolutely thrilled to hear a detailed description about stomach cramps, shivers, nausea, dehydration and the pain of consistent diarrhoea all day and night in a, for the first time, silent cancer hospital which had run out of private rooms, and more importantly private toilets. Well let's just draw a line under it and say it totally ended this chapter of the ordeal with a cruel almost taunting poignancy. I had diarrhoea because commonly people post surgery have constipation, yes I know another delightful experience, and they gave me medicine to help make it easier for me which I have to say is the sort of help I can live without in future.
People keep telling me I am strong. I am not feeling so strong. The truth is I broke down on Thursday when they said I couldn't go home and I remained caught in the current near that low ebb ever since. I think I had used up all my strength getting through the first three days knowing that I would be leaving as they promised me on the first day so when they said I could not leave I of course smiled politely until they left the ward and then found I could not fight the tears quietly behind the curtains. I had not slept more than moments and those moments were on my back which is a position I have never found comfortable. I had listened or directly starred for hours in our cramped room into the world of suffering a poor elderly dying woman lived in. She could hardly draw breath, was dosed up high on morphine, was thin and breakable, rarely spoke or moved and worst of all she was somebody's mum, someone's grandma. I would never want to watch anyone I love lying there like that, waiting for death in that bed starved of daylight with strangers eyes on their every waking moment. The whole time I was racked with a strange guilt because I didn't want to look at her I felt bad that I was so naive and selfish but I think that is understandable in hindsight. I am 31 (just) and have not had anything remotely wrong with me let alone been in hospital since I was 5 and got stung by a bumble bee who left it's sting in my swollen knee joint! I only found out I had cancer a few months ago and I am running on empty down a bewildering path with no map, no provisions and no faint clue of the destination I think I can forgive myself for finding the hospital a hard place to be.
So it's over right. Turn the page, start over and put it to the back of my mind right? Right?...The trouble is my mind is flooded with all the conversations that my headphones would not block out without disturbing other people's comfort around me or my hearing permanently. The first lovely lady who left the morning of my second day was my dearest companion but still stained me with fear as she had breast cancer at 41 and now has unrelated breast cancer again 18 years later. Chemo brought on her menopause but she had luckily already had one child. The two women who came in on the 3rd day managed to catalogue between them every type of cancer and side effect within their constant monotone discourse (apart from the occasional break to sing along to hymns on Radio Marsden) which included discussing the blood soaked knickers one of the poor ladies had been left in for days. The lady opposite her had a reaction to the chemo and her throat closed up and face swelled until they injected something to stop the allergic reaction. What a total fucker having cancer and an allergy to chemo, that is beyond cruel. You can't escape from it, the glimpses of people lying in beds down the corridors all different faces but same expression. Death and suffering sometimes one after other.
Both Phil and my brother Ian said to me they never want to ever see me in there again, I agree. I remember exactly how exhausted I felt just visiting Janine years ago in a ward very near to my one and how I would have done anything to get her out of there but sadly for some people that place is a huge part of their life to the point they know every staff member by their first name and there is nothing anyone can do to make the place any better it is unfortunately the nature of the beast. Someone incredible donated the money to build a huge children's wing which they are making visually significant progress with every day. It fills me with a simultaneously contradicting emotional response of restored faith in human nature and total despair.
I am at Phil's home tonight moving from bathroom to sofa still and thinking about my old lady on so much morphine she is not of this world and probably better that way too. Hope the night goes easy on you Linda.
Do me a favour give something, if you can, to these people...please. Then take a deep breath and persevere through it because you really are so very very very fucking lucky.
(Donation links on left hand side)
Thursday, 15 April 2010
So after I was injected with radiation I hoped for a super power, finally success I think I have turned invisible. The nurse promised pain killers at 8.30am but didn't notice me again until I rematerialised at the desk in the late afternoon.
They don't like sleep here apparently people with cancer don't need it. So whispering at night is banned. Night staff are generally encouraged to make as much noise as possible especially, I believe the rule is, when they are next to my bed.
Forget dignity and privacy they don't live here anymore.
Enough I want out. Nurse said not tomorrow. Maybe not next day either. Shit.
Wednesday, 14 April 2010
So after 3 days hectic planning I left the house at 5.30am and headed off arriving at sutton am hour and ten minutes later, if phils car could fly it would have done at the speed he d whisked me off to hospital in. I was to my absolute relief given a private room only to settle in and be moved to a nearby cramped ward with my bed is situated opposite a terminal patient and a lady having chemotherapy. Sound appealing for a hospitalized first timer?
After going 24 hours without food or water and waiting all of 8 hours in a sunshine burnt room with thick surgical stockings warm enough for an Alaskan swim I still when the nurse actually remembered I existed nodded when asked are you ok!
So at 5.30pm I headed down to be greeted by an unfamiliar person who didn't hide his understandable desire to get home. I was last of the day and there had been a string of complications preceding me. He then left me half naked in a cold pre op room and went into theatre to set up for ten minutes.
I absolutely could not wait to go under to relieve the headache that arrived at 1pm through dehydration and has returned now through exhaustion. I vaguely heard the surgery went well from the swiftly departing surgical team and I told them they were amazing whilst resisting the urge to say they are far from amazing at scheduling operations and retaining the 8 hours of torture I will never get back that now may mean I am in here longer.
Phil. What can I say? He went without just as long out of a gentlemanly desire to suffer with me, but this is the man who ate cold beans to prove his love I may I add did not. He did the right amount of hand holding, hair stroking and soft laughs to give me enough support to walk down a very rough road.
So I lie here oxygen tube up nose, bloody fluid draining from a sore wound into a large bottle, I v needle numbing my hand throughout the heat of the night with the background noise of strained lungs and vomiting and what do I feel? I feel lucky to be alive and so relieved that in a few days I can close the chapter of book on how to survive two operations in three weeks and not fall to pieces...much. love you all dearly and please stop to appreciate your life today.
Monday, 12 April 2010
31st January 2010 - Found lump (gulp)
1st February - Doctor checked nah don't worry let's pop you off for screening.
10th February - Screening day, 4 hours of waiting and tests and mammograms and a needle biopsy or two. Yikes.
19th February - Got letter accidentally letting me know I had cancer, nice one doc, (Saturday morning) two day wait to speak to someone. Worst weekend ever.
21st February - Got referred to The Royal Marsden in London saw Brighton Macmillan nurse for part diagnosis sent home for another night of worry.
22nd February - Got full diagnosis from Brighton clinic consultant - 2cm cancer in right boob I would be looking at chemo definitely then radiotherapy but surgery first.
3rd March - went for second opinion at The Royal Marsden London Surgery booked 23rd March no offer for treatment until they have results.
18th March - Called up to London for an urgent ultrasound.
19th March - Saw fertility expert 15 floors up in an ante natal unit to be told chemo may bring on menopause. nice thanks for that.
22nd March - Injected with radiation - no super powers.
23rd March - Day surgery on breast and armpit. Ouch. Let out of hospital late pm.
1st April - Post operation check, they found cancer traces in the glands, maybe more surgery...chemo still possible.
9th April - Surgery booked in for following Tuesday to remove glands.
13th April Surgery in Sutton on armpit (Axilla) will be in for up to five days. Results expected ten days later in London.
So quickly about me today - I have that weird breathless feeling again I had almost forgotten how that felt. I am tired and obviously apprehensive, feel like life may change as from tomorrow. I am off to Eastbourne to get something to wear in hospital and to not be alone if I am honest. Eek.
Saturday, 10 April 2010
Just promise me everyone, tell yourself, tell your friends, tell strangers to be vigilant at checking your breasts. Please. That is men too yes men can get breast cancer too. 'Over 45,600 women and around 300 men are diagnosed with breast cancer each year in the UK'.
I am totally going to get this damn cancer out of me and then work my arse off to limit the damage to anyone else. It is all about finding it early and supporting the research to find prevention and new less drastic treatment.
After the usual nausea filled hour long wait in a large chaotic room surrounded by significantly older people looking at you like you are lost we were seated in a small room and abandoned for another half an hour. Until the registrar I saw last week comes in and proceeds to run through more gory details few of which I retained fully as she was the one with the fast speed South American accent I cannot fully decipher. So things that stuck with me; I am booked in for surgery on my armpit (axilla) in four days, as in TUESDAY, in Sutton. The surgery is called a ????? clearance where they (ick) move all the nerves and importance stuff out the way and take out a load of tissue including maybe all my glands. They run this through a ton of pathology tests and come back to me ten days later with results.
So the surgery - There is way more risk for lyphoedema, that incurable infection I keep fretting about. I may not feel part of my arm because they have to break through some nerves that cross over horizontally and they may never reconnect or not properly. I will no longer have glands in my armpit so my other glands will have to work hard to cope and I may find future problems due to this. It is 'not ideal' to be doing the operation so soon after the last one and I am pissed off to have just got back on my feet to be knocked over again on so many levels. I will have to remain in Sutton Royal Marsden for 3-5 days with a 'drain' in my armpit, so totally panicked with how to ensure Phil is there for me but retain enough holiday for him to sweep me out of the country when this shit is all over I have no clue. My degree, I have no clue. What to do with the children who are supposed to be back with us Friday whilst I am still in hospital, I have no clue and then of course I need them to not be near me for at least a week so I don't get infected. What to sleep in, what to pack, finding time to get prepared and rest, I have no clue.
The treatment - She did not mention radiotherapy once. She talked of chemotherapy more times that I wanted to hear. Her bedside manner was not exactly what I would call gentle unlike Mr Gui who I had expected to see yesterday but was called into surgery then trapped with another patient. She said that when they have all the information and they can see if the glands are clear or not then they will recommend treatment by putting in the data in a computer and seeing if their stats show women with my situation undergoing chemo and how many of them are alive in ten years compared to not undergoing chemo and see the risk. 10 years! What the fuck did she say that for? I am sure she has trained for years and knows more than I could imagine about breast cancer but she knows nothing about people because that kind of phrasing would not have left my lips if I was talking to someone who is facing what I am facing.
She also talked of the slight possibility of the little microscopic pieces of the tumour having broken off and gone through the glands into the blood stream and that if there is any evidence of this chemo is the best method to ensure we get rid of that or of course it would wreak havoc anywhere I have blood flowing. I agree but I stupidly had convinced myself I would not have to have it and the reality is not going with me on this one.
So I am sorry that I can't appear to be incredibly positive about this right now but I think I deserve to be entirely fucked off for just a day or two, I will turn it around in no time at all, possible later, and bounce back no doubt about it but come on you have to admit it is shit by anyone's standards.
Friday, 9 April 2010
I slept really badly last night had nightmares which is the first sign for me that I am truly anxious about anything. But no tears only fears.
I will keep you posted when I can.
Tuesday, 6 April 2010
I can't help but think about the other people I was in the day surgery with and how one at least had a full mastectomy and the others might have had terrifying news in their post operation appointment far outweighing anything that I had to face. If more surgery is the way forward then at least I can breathe easy that the cancer will be gone come what may side affects and issues cancer free is cancer free.
The sun is shining out there and I am healthy enough to enjoy it, I have an amazing family and friends who love me unconditionally, a partner who would selflessly swap places with me in a heartbeat, a cat who knows nothing about it and would not care anyway but he is cute, money to buy food and time to be creative. What more could anyone want or need, right?
So Today is about enjoying life. simple.
p.s. Someone said they had a problem reading updates to my blog so just to remind you if you put your email address in the box down left hand side you will be emailed directly with all updates. xx