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

Saturday, 24 April 2010

Tired so so tired of this - Sorry

I feel so intensely guilty for not jumping up and down still and being unequivocally happy to be alive, and maybe it will puzzle or astound you as to why I am not just taking this win and running with it. You see in truth I have no where to run other than directly into the next stage of the process, and yes it could be so much worse, sorry to be negative about it, but it could be so much better.
Of course I am relieved I don't have any more cancer in me and of course I am so relieved I won't have to have chemotherapy, all cancer patients biggest fear except the obvious. But it is not over for me not by a long way and I can't move on and put it behind me because there is this horrible risk of it returning and the only option for me is to step into the rather poorly researched and brutal world of prevention which supposedly gives me a fighting chance, we hope. Yes I know. I will snap out of it but let me get this off my chest, or breast or something, ha.

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

Common side effects
  • Hot flushes.
  • Night sweats.
  • Vaginal dryness or irritation.
  • Loss of sex drive.
  • Indigestion or mild nausea.
  • Periods become irregular or lighter.
  • Periods may stop while taking tamoxifen, often because the menopause had occurred naturally or other treatments such as chemotherapy have caused an earlier menopause.
  • A decrease in the strength of the bones in pre-menopausal women (this is not thought to affect post-menopausal women taking tamoxifen). See Osteoporosis booklet.

  • Less common side effects

    • Eye-sight problems.
    • Hair thinning.
    • Increased risk of blood clots (although the overall risk remains low).
    Because of the risk of blood clots, it is especially important to tell your GP if you have any symptoms such as a swelling or pain in your leg or a feeling of shortness of breath.
    • Thickening of the lining of the womb
    • Polyps, ovarian cysts or, very rarely, cancer of the womb
    It's important to tell your GP or specialist if you have any unexpected vaginal bleeding, discharge or pain.
Sounds like a dream come true right? I read this and think why the hell would I want to take this? The cancer is gone right? We have done the whole two surgeries shitfest and everything that brought with it, and risked a lifetime incurable infection TWICE and continue to do so on a daily basis for years to come and the last surgery has blessed me with 'cording' in my arm so painful I want to saw my limbs off, and let's not even touch on the emotional strain and mental stress of the whole ordeal so what now what what what? Oh vaginal dryness, loss of sex drive, risk of osteoporosis and menopausal symptoms and more pleasant side effects for 5 years after Radiotherapy (which I will get on to). Gee thanks. AND now you are also thinking oh my god we have to read this blog for FIVE more years! Don't worry I don't think even I can moan about life for that long.

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

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

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

Common side effects

Radiotherapy to the breast doesn't usually make people feel unwell. However, your body will use a lot of energy over the course of your treatment so you may feel more tired than usual.
This may affect what you feel able to do. The journey to hospital can be tiring in itself. Many people find they can manage their daily tasks as usual and some people continue to work full time.
Others need more time to rest, so it’s important to take as much time as you feel you need. Everyone reacts differently to treatment but certain side effects are more common than others
  • You may develop a skin reaction during or after radiotherapy to your breast, including redness, darkening, tenderness or itching of the skin. This will tend to begin 10 to 14 days after starting treatment. Your skin may peel or flake as treatment goes on, and there may be a red, sore, moist reaction.
  • You may have aches, twinges or shooting pains in the breast area. These are usually mild, but can go on for some time after treatment is finished.
  • If the treatment area includes the central part of the chest, a small area of the oesophagus (gullet) can be affected, causing heartburn and discomfort. You may also experience loss of appetite and sometimes nausea.

Less common side effects

  • Radiotherapy to the breast and armpit can cause tissue hardening. This is known as fibrosis and is caused by a build-up of scar tissue.
  • Sometimes part of the lung behind the treatment area can become inflamed, causing a dry cough or shortness of breath. This usually heals by itself.
What? No, you mean you don't fancy some? Aw come on now you have lie still for an hour or so first time whilst they line it up and tattoo your breast then come everyday for up to six weeks to be zapped with radiation localised to the place they found the tumour and there will be no bounding home. 
I suppose what it all comes down to is I was elated to hear the news but the apprehension regarding chemo and further cancer only screened the next step and what that brings with it so now I am utterly deflated while I contemplate the next 5 years and it seems like such a long time right now especially when I am the wrong end of it. I also on top of all this had no choice but to intermit from uni till October or maybe January and leaves a feeling of failure no matter even if I know it's not my fault. I will have to watch my friends graduate and move on whilst I have no idea how to pay for my rent for summer and how I will fund my degree next year as apparently four years in usually the limit I have been told. They may not even run the same course next year. It took me so long to get to uni and bloody cancer might have blown it for me. Also brimming under the surface is the dread of post cancer depression mentioned repeatedly now by friends and professionals as a common result of the experience even to previously stable and mentally healthy people.

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

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