I found hope in a hopeless place......

A slight change to the words in Rihanna's song to  "I've found hope in a hopeless place" finally someone has experienced the same side effects on Tamoxifen that I have, finally they acknowledge what I've been going, finally I've found some hope....

My ankles hurt and when I say hurt I mean a lot to the extent that when really bad I can't walk apart from the fact that I've put on nearly 5 stone in weight for the first time in my life and I find just getting around hard work, being a size 8 all my life and now an 18+ I was not prepared for this side effect and it seems neither were some of my friends and family. Since the weight gain I've hid out in our flat down in Devon (most of my friends and family live in Somerset), my best friend walked straight past me in the street and I haven't seen that much of her all year. Obviously this has been hugely upsetting but I pushed through it all and finally accepted the new fatter me then the ankle pain started only slight at first now its a real problem making it impossible for me too walk on the bad days and on the good days I hobble around, of course this doesn't help with exercise and trying to loose weight. Here's a copy of a  a response from Belinda a fellow breast cancer patient who has given me hope....

Hi Sarah, yes to everything you mentioned. Something that helps if you have the painful backs of ankle pain I had. Before getting out of bed, lay flat on your back, legs outstretched so you can feel the mattress on the backs of your knees.

Keeping legs still pull toes up towards you, gently, 4 or 5 times. You're gently stretching the ligaments. Sounds a silly little exercise but it helped me with the painful hobble to the bathroom on waking.

I put on 4 stone while on Tamoxifen. I did lose it all when Tamoxifen stopped working for me and I'm now 4-5 dress sizes smaller than when I was at my heaviest. My advice is don't beat yourself up about the weight gain it's not your fault. I became a little bit clever with pretty scarves that could be drapped, tied to distract and disguise. How about an appointment with the pain clinic at your hospital to see if they have something effective and fast acting for the migraines? Take Care..x

I cannot express how much this post means to me it confirms that I'm not going mad, that others are suffering with these severe side effects and that at the end of it all I could loose all the weight I've put on, like the the title of this post I've found some hope......

Latest news on Tamoxifen.....

I keep getting weird coincidence the latest one is related to the bane of my life Tamoxifen. Some of you may remember that I suffer with severe side effects taking this drug I've been on it since Oct 2011 and am supposed to be on it for 5 years. Recently due to the hideous side effects I have been considering stopping taking this drug and figured that I'd been on it for 2 years and couldn't take anymore of its bullshit!!! However 2 media releases have come to my attention one is on the radio here's the link http://www.bbc.co.uk/programmes/b039d4b6 its right at the beginning of the programme and only lasts for 15 mins well worth a listen, basically they talk about the lack of support offered to women who are considering stopping the drug, why women want to stop taking the drug, and its associated side effects. The other was on Sky and my spiritual healer saw the programme and relayed the information to me. It would seem that there is a 2 year itch with this drug where the side effects if suffered from are so severe women are not taking it and sadly dying as a result. Obviously there needs to be some form of follow up support for women taking this drug as its completely understandable why women choose to stop taking it because the side effects can be extreme. Side effects range from severe weight gain (I've put on 4 stone in 2 years for the first time in my life and have gone from a size 8 - 18 overnight!!! I don't eat anything really different so its not food related apart from the fact that I don't eat wheat, dairy, or red meat), chronic migraines at least 3 a week this is so debilitating I have too spend the day on strong pain killers and in a dark room in bed, arthritic pain in both ankles and wrists/hands so bad that on occasion I can't walk, hot flushes I literally pour with sweat and go bright red in the face this makes me not want to go out so exasperating a lack of confidence and trust in my own body and its functions apart from the fact it makes me feel so ill. Not everyone taking the drug will suffer with these side effects but those of us who do its absolute hell. One of the best suggestions on the Radio 4 programme was for a 3 month drug holiday, my own Onc. suggested a one week break to which I replied that its not worth it and not long enough she certainly made it quite clear that I should not stop taking it and that she in no way would agree with me doing this. I put it too her that my oestrogen count was only 4/8 and not 8/8 (so my cancer is fed weakly by oestrogen) she told me that that only means that I will die a bit later than someone who is 8/8!!!!! meaning it wouldn't get me as fast as if I was 8/8. ughhhhhhhhhhh I also put it too her that the dammed Tamoxifen is making me put on so much weight and that obese women are in the high risk category so surely the one thing is cancelling out the other, she told me that news reports about obese women being in a high risk category was nonsense!!!!! ughhhhhhhhh it would seem I am stuck on this fucking drug for the time being or until I literally can't take anymore and go do dally on the blasted stuff. Its sending me round the bend already and I honestly don't know what to do about it, I feel at the end of my tether. Anyone reading this who has some answers please share and email me. Thanks xx

Fun in the Sun....

Its been a while since I posted mainly due to the arrival of summer in all her glory, living in South Devon we are spoilt for choice when it comes to gorgeous beaches and plenty of messing around on the water, so as you will of gathered I have been playing and enjoying myself instead of moaning and feeling depressed, its true the weather really does play an important role in your mental health. I've spent a fair few hours swimming in the sea (it really was that hot!) the sea salt worked wonders on my poor arm, I got bitten by another horse fly and reacted very badly too it, my whole arm swelled up luckily not my affected side but unfortunately the side the nurse has to stick the needle in for my Herceptin, so I got a week off the stuff to allow the arm to heal and just in case it turned into septicaemia! Horse fly's are utter bastards!

As far as planet Cancer is concerned I have some shocking news my best friend's sister in law aged early 50's was diagnosed with Lung Cancer which by the time they had found it had spread onto all of her bones it took two weeks from being diagnosed to her passing, everyone is left in complete shock she leaves behind 3 daughters the youngest is 15, its crazy shit and it doesn't get more scarier than that.

As far as my cancer is concerned I'm ok at the moment, I've been and seen my Onc. who agrees with me about the dammed Tamoxifen, I kid you not when I say I've put on 4 stone!!! this is just crazy weight gain never before have I been this big I was always a size 8!!!! so this along with my very very achey cramped legs and feet have made my Onc. request a ton of blood tests and if they come back ok then she really will have too do something about the Tamoxifen I have way too many side effects and she told me that if I am post menopausal then I have a far greater choice of hormonal drugs to try, an appointment is booked for the results at the end of August and as always I will keep you informed. Another slight annoyance is an itch on my left breast (I had an itch on my right breast and then found advanced BC!) its gone today and I'm praying it was just something itchy in my top that was annoying me of course it doesn't help being so blasted hot and bothered (hot flush central) I now sleep with the fan pointing at my face and I am happy to report it works yipeeeee!!!

That just about wraps it up for today's post of course I will keep you all informed about results etc but in the mean time enjoy the remainder of the summer and treasure those blissful moments. xxx

Breakdown in the mall.....

Decided to go shopping today prior to going I did have a headache coming on and I'm not sure whether or not that had some bearing on my mini breakdown in the shopping mall. I think I'm never gonna go shopping especially for clothes again. I am now a size 16 everything else was way too tight, can't quite believe I'm actually a size 16 I've spent the past 30 years being a size 8-10, I look in the mirror in  the changing room and I don't recognise myself let alone anybody else and that includes my best friend who completely blanked me in the street because she didn't recognise me, it is that bad, not only am I the size of a house I am also sweating profusely whilst puffing and panting like an old lady, its just so so sad, and its now getting too me so much so I broke down in the middle of the shopping mall today cried my eyes out, I think its because I don't really see that many people we live in such an isolated rural location that when I do go out I notice other women and can't help but mourn the loss of my old slim self, its not good on any level, even my rings don't fit me anymore I've got a couple of silver rings that go back too when I was 21 that fitted me up until this fucking shit happened to me and it is the fucking drugs making me put on this weight so utterly annoying and so hard I'm trying to be up beat and positive trying to eat right and exercise yet I'm still piling the weight on, I'm at the end of my tether and feel the only thing I can do is stop taking the tamoxifen, I realise this might seem a bit extreme to whom ever is reading it and it may come across a tad un-grateful BUT please believe me when I say I've thought about this long and hard the figures for my oestrogen were 4/8 so my cancer is only weakly feeding on oestrogen. The timeline for my treatment goes like this, I didn't start taking the tamoxifen until after my surgery up until that point I was on chemo which stopped in July 2011 and herceptin on its own ever since, then I had surgery in the September and started taking the tamoxifen in the October I feel this kind of proves that the tamoxifen is the culprit to the weight gain and the terrible joint pain as I only started suffering from these symptoms since starting the the drug up until that point I was fine well as fine as anyone doing tax chemo can be.  I believe my miracle drug is herceptin and have done all along. The other major side effect is the joint pain is unbearable at times I hobble so bad I can hardly walk, my thumbs ache all the time and are getting worse to the point where I feel I can't write or type (if I was working I'd be sacked by now). The downside to all the gorgeous hot weather is that I am now on at least 40 major hot flushes a day I sweat constantly and the only respite I get from them is if I stick my head in the freezer or plonk myself in front of the oscillating fan (which by the way is a god send and I highly recommend it if your suffering) (I have too have it on all night otherwise I don't sleep) they really are quite wicked!

So you see I've got to do something about this and the only thing I can do is stop taking tamoxifen, I have an oncology appointment on monday and will try to discuss this with them but I know they will tell me not to stop taking it that I must take it, its a really hard decision to take but surely quality of life is important as much as saving your life, I mean whats the point in taking a drug thats saving your life but making you as miserable as hell and quite frankly suicidal which is where I'm at at the moment, its not very life affirming thinking terrible thoughts like I want out, or stop the world I wanna get off and its all because of the side effect from taking this dam drug. Will keep you all informed of my dilemma and my ultimate decision.

Tamoxifen and weight gain.....

I am coming up to a 1 year anniversary, its one year since I finished chemo and joyfully, and it's one year since I started on the dreaded tamoxifen, its taken the best part of a year and much munching on my part (increased appetite) and whilst I am eternally grateful for the drug and the fact that I have access to it I am not so happy about the weight gain, admittedly I have been chomping for England lol but seriously not that bad, I have given up red meat and only eat chicken once a month, I green juice everyday and drink a pint of the good stuff, I have to admit that chocolate has become my one weakness and I will happily woof down a whole bag of Revels but what else can you nibble on, trying like mad to cut out cheese and butter, basically just looking at anything with fat in it makes me put on weight. Up until this dx I had stayed the same size since the age of 18 size 8-10, able to eat whatever I wanted, whenever I wanted and didn't give the weight issue any thought, now I am a size 12 and feel that even the size 12 clothes I have are tight on me, this is a nightmare, going to have to do some more exercise and try and loose this weight the only trouble is I'm not sure if you can loose weight on tamoxifen, I been given to understand that the way tamoxifen works with your metabolism it slows it down, this makes sense but the side effect is weight gain, also as I am now in early menopause naturally weight will go on especially round the middle, its a total bummer, will be looking on the forum too see what others have experienced and what can be done about it.

I was starting too feel sort of normal again and then I realised I'd put on a mountain of weight and feel a   bit crushed now, ah well I suppose the alternative and not taking tamoxifen is just too awful to comprehend, added to that I also am suffering endless bouts of constipation and as a result have a sore rear end, breast cancer is such a shit! this disease just keeps on giving :0(