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, 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
Sunday, 4 April 2010
Friday, 2 April 2010
There was no trace of cancer in the margins of tissue around the tumour they removed 9 days ago, so the cancer had not spread to the cells around the actual tumour (inside the lump of breast tissue).
There was however a trace of cancer that had escaped into the glands.
Chemo was mentioned ALOT but it is still not guaranteed treatment for me although they reminded me often that normally at 30 this is the procedure.
Radiotherapy was mentioned ALOT and is a given, I will be having this no matter what I do.
But the surprise that for some reason I had escaped to consider was more surgery. That is what it seems the Royal Marsden suggest I have done now to remove the trace of cancer. No brainer right get the cancer out of the body simple done dusted. No not at all. Firstly I did not in any way want more surgery after hardly recovering from the last one.
Secondly there is officially no medical evidence either way that the tiny trace of cancer in my glands will definitely or definitely not turn into a dangerous tumour. So who wants to risk it? well when you know that your chance of having lymphoedema http://www.breastcancercare.org.uk/about-us/our-services/local-support/information-sessions/lymphoedema/, the incurable shitty arm swelling painful infection for life, is multiplied by the surgery it makes it a tough call.
No research has been done so no one can tell me if in five years I will regret opting for surgery that will turn out to be unnecessary and drastic or in ten years be sitting there with cancer again because I didn't op for surgery and it spread (even with surgery I of course could just as easily get cancer again unrelated). No evidence no advice total gamble. WTF do I do?
If I have radiotherapy on my armpit aswell as my breast then the risk for the infection is just as high. Radiotherapy is not, like all cancer treatments, a guarantee for it not returning it still may come back it is a preventative measure to kill all the cells in the area in a hope that it stops the cancerous cells developing.
I am going back again to see Mr Gui on the 9th April and this time I really fucking hope they tell me something I can trust.
So bring on some sunshine, giggles and yes yes yes cake and off we go to see my bro tomorrow for two days of totally forgetting about this crap, who am I kidding, and having a cancer free birthday : ) Happy Easter everyone, sorry to be a drag.
Thursday, 1 April 2010
The only request I am making is to handle me carefully after I find out either way, I normally let you all know where I am at emotionally pretty swiftly but let me just say that although no doubt we all will feel this relief immense relief that is has not spread and no chemo necessary if that is what they tell me, however I don't know if I can handle too much celebrating because inside I will be carrying with me the verdict and treatment plan they have given (making it very real) and we all know none of the treatments are fun and without shitty side effects and radiotherapy still essentially means side effects, hospital daily visits, more risk for this incurable infection and I will have to give up uni for now and that is going to hit me hard. The Macmillan nurse warned us that commonly women find the surgery the easiest bit and the treatment far more challenging, I hope to disprove this theory but I can't promise.
I am pretty much asking, and I have not until now, for everyone to be aware that I might not take either news well so be ready. I might not but I might, so handle with care ; ).
Anyway giving you all the heads up. xxx