Fatty Liver anyone?

So, been looking at my CT scan reports as so often it takes time to come down off the euphoric response to a clean good scan result and then to gradually digest the medical wank. Medical wank is my term for there usage of words in describing the observations of the scan. So what the fuck does "generalised hepatic steatosis" actually mean well in short it means I have a nonalcoholic fatty liver. I actually don't drink never really did even before I was dx so it is by no means anything to do with alcohol. How does this affect me well I don't really know but I found out that it was probably caused by Tamoxifen here's a link to an article explaining the connection http://livertox.nih.gov/Tamoxifen.htm  ok so I am hoping you've read that link and now understand why Tamoxifen would affect your liver. My burning question is why don't they mention this when they prescribing the stuff? urghhhhhhhh makes me so bloody angry, we should be informed about the side effects including fucking up your liver prior to taking the stuff. Tamoxifen strikes again....... of course being obese due to the dammed drug also contributes to guess what? you've guessed it 'fatty liver'. Going to look further I know Milk Thistle is excellent as is Dandelion for the Liver so I will be uping my intake of those 2 and looking into other Liver helping alternatives. I am so glad I don't take Tamoxifen anymore.

Highs and lows

So went to the hospital for the results of my CT scan and to discuss the latest issues regarding the thyroid and cholesterol. The CT scan was good everything is stable or the same as the last scan big sigh of relief phew........

Not so good was the discussion regarding the massive 5 stone weight gain, treatments and my thyroid. Of course I didn't get to see my actual oncologist as always I see one of his minions a female Dr that for the purpose of this post shall be named Dr C. came out who is very nice BUT wow she just doesn't buy it that the treatments have made me put on this weight which I cannot shift. She told me that the thyroid wasn't anything to do with the cancer and was "something you probably always would of developed" WTF!!! so its got nothing to do with the chemo or the radiotherapy at all, bullshit! of course its to do with treatments I was fine before I got cancer I never went to the doctor and certainly never had a problem with weight gain, thyroid or cholesterol. She then proceeded to tell me that as for the weight gain I needed to watch what I was eating try to eat more green vegetables, eat smaller portions and change my diet. At this point I nearly blew but somehow managed to retain an air of calm in which I informed her of my monumental lifestyle changes she continued to prod me with "you need to do more exercise" I agree BUT I can't do to much as I get out of breath puff and pant and go deep red in the face then sweat profusely to dripping point I kid you not I actually think I am going to have a heart attack just walking up the fucking stairs!! did she listen to me did she hell!! No apparently its all my fault nothing to do with the treatments I eat too much of the wrong thing and don't exercise enough I need to swim for half an hour a day WTF!!! Luckily one of the nice nurses who has known me for as long as I've had cancer backed me up on the lifestyle changes and the organic green juicing etc the doctor just didn't want to hear it I reckon if she could of she would of sat there with both fingers stuck in her ears going lalalalala thats how far she didn't want to accept the fact that all of my problems are caused either directly or indirectly via drugs from the cancer, I have pondered on this and believe it is because if they put there hands up to this an admit its caused by treatments then they would have to deal with them, by denying it they dissolve any responsibility.

I then moved on to having my ovaries removed to which she actually giggled yes thats right laughed at me for such an absurd suggestion! not really though is it? I have ovaries that are fighting back and being kept at bay by a large nasty injection of Zoladex so why the fuck not take the bastards out and have done with it. At this point she left the room to check with my Onc. who sits in another room WHY!!!! god only knows whilst she was out of the room I chatted with the BCN who was just as mystified by the callous response to my questions she told me I could get a second opinion!  Dr C. came back to inform me that my Onc. agreed with her that I didn't need my ovaries out.  Just for the record I DONT FUCKING AGREE WITH EITHER OF THEM.

 Of course what she doesn't know is that one of the so called life saving drugs Arimidex I haven't been taking they prescribed it for me last year after I stopped taking the Tamoxifen telling me that it would be better than Tamoxifen and wouldn't make me put on any weight, after reading the side effects lists I beg to differ weight gain being the most prominent problem with Arimidex so I chose not to take it but have been keeping it a secret from them at the hospital. It is a worry and I have really wrestled with this one but I decided I would rather not be around if I am the size of a house and have to be wheeled round in a chair. Again quality over quantity is my moto and I am sticking to it. The Arimidex is a blocker for oestrogen the Zoladex stops the ovaries from producing oestrogen.

I also asked about the possible removal of my remaining massive breast. I can't wear a bra as my Lymphoedema is on my right hand side torso every time I do wear a bra I get a lot of pain, recently went to a wedding and had to come home early because it was causing me so much pain. It was suggested that I go see the Lymph nurse again....... I don't find that it really helps that much certainly not enough to stop the pain when wearing a bra. So I hit another brick wall.

To end the discussion she pointed out that I am stable and that all the drugs they have so far given me are working and will continue to work for the time being. This kind of shuts me up and makes me feel guilty for even bringing up the subject.  She wasn't interested in the fact that I juice organic green veg, take supplements walk 5 miles a day, don't eat potatoes, bread or dairy.  I am left with this problem what is the point in living if you feel like utter shit and contemplate suicide? Why have I been through all of this shit to come out feeling like life is worthless?

Arimidex or NOT...... that is the question

So as many of you will know I have been kind of given the all clear see few posts below. All the scans are clear and there is currently no cancer anywhere whoopie! However, in place of the dammed Tamoxifen which I stopped taking on the 21st July I have been prescribed Arimidex because apparently I am now through the menopause. Last week I decided to have a look into the side effects of this particular hormonal drug and found to my horror even worse side effects than the Tami! My main ache on Tami was the weight gain and the migraines, on this new tablet the side effects are and I quote from real life stories cataracts and blindness!, more fucking weight gain, joint pain, migraines etc etc etc oh with the added high possibility that I will develop arthritis in my thumbs (already have problems with the thumbs) which would need operations!! WOW and they didn't tell me of any of these side effects when they prescribed it to me if they had of done I would of said a flat out NO THANKS. Feeling a bit livid with the docs and hospital for not telling me of this and have weighed it all up...... so if I take it I might prolong my life by a bit longer but I might go blind and have problems with my hands so wouldn't be able to paint and create its a no brainer really isn't it of course I'm not gonna take the shit, I'd rather not be here if I couldn't see the world to create my art. I have an appointment in October to see how I'm going on the Arimidex..... yeah right.....!!!!! not sure what I will tell them at the moment and quite honestly don't want to take anything else. Will continue on the Herceptin because in comparison the side effects are minimal and don't affect me that badly. I would be interested to hear from any of you reading about this drug Arimidex or by brand name Anastrozole and your experiences on this and if you find or recomend any of the other hormonal drugs to be better or with less horrible side effects. Please post a comment below and I will return the message. In place of prescribed drugs I sent off and received my first supply of 120 caps of DIM which I am going to take as a natural alternative to the hormonal's for further information see my report on it in the post titled "DIM definitely not stupid......"Many thanks for listening.

Stopped taking Tamoxifen.....

Thats right I've finally had enough and stopped taking the Tamoxifen its very nearly 3 years since I started taking them and just cant cope anymore with this terrible drug. The list seems endless but this is why I've stopped:

1. Enormous weight gain (4 stone) I've gone from a size 8-10 to size 18-20

2. At least 3 major migraines a week (I used to blame Herceptin but realise now it could be the Tami)

3. Arthritic joint pain in both wrists and ankles

4. Swelling and water retention just to add to the weight misery

5. Cramp in my toes and legs 

6. Hot Flushes including sweating from my eyeballs and feeling like I'm going melt into a puddle

7. Night sweats and unable to sleep

8. Mood swings and depression

9. Unable to walk or function at times due to the above side effects I end up walking around like an 

old lady of 100!!

I've been putting up with this sorry lot for the past 3 years and I've had enough yes I've hit the fuck it button what made me finally decide was the fact that I've been so depressed that I feel like I'd rather not be here anymore I realised this was a suicidal tendency (not good when you live so close to the cliffs) this was the final straw and as of yesterday I've stopped. I have an onc. appt. on August the 8th with results of MRI, CT, heart scan and blood test. Haven't decided whether or not to tell onc about stopping the tablets he will probably go up the wall if I tell him but I just can't live with this anymore I need a better quality of life. I will explain how I've been feeling and the above reasons if I decide to tell him. Obviously I'm still on the sub-cut Herceptin. I wouldn't mind if they tried me on another ai with less side effects but they told me at the last appointment that they wouldn't change the Tamoxifen until I was through the menopause hence the reason for the blood test to determine my menopausal status.

Apparently its going to take a good 3 months for the stuff to be out of my system totally but I feel relieved and happy about my decision. Its a risky strategy but quality of life is just as important.

Sunshine and shadows.....

Its been a while since I posted on here I suppose I've been trying to get back some sort of normality to my daily life which doesn't include cancer. Having said that the fucking shit is always just round the corner and I find I can never really forget about it. Last week it was an MRI scan on a sunday morning!! this week its a Herceptin shot at the local outreach clinic and of course on a daily basis I am still taking the dammed Tamoxifen, don't really stand much chance of forgetting about it do I? added to which I have a CT scan booked for next tuesday with results d-day booked for the 8th of August and so I'm back on the treadmill that is the waiting game....... I feel bad moaning about this when its such a beautiful day out there all blue skies and summer heat but as the title of this post suggests there is shadows and I'm experiencing one of those day's where I feel deflated, most of my problems lie in the fact that I don't recognise myself anymore, I quite simply don't look like Sarah anymore, the monumental weight gain caused by the Tamoxifen, the pubic hair on top of my head where my beautiful brunette waist length straight hair used to be also toe nails falling off and nails on hands looking decidedly doggy urghhhhh........... think you probably get the picture I'm on an off day, sometimes I ponder about not taking the drugs and seeing what happens when I voice this opinion others around me give me a telling off and make me feel guilty for feeling like this but I can't help it I bloody hate it! I just want to look like me again and not some super inflated, puffed up, doddery version of myself this shit seriously ages you over night. I've started to sub-conciously avoid seeing anyone or going anywhere which is pretty easy to do when you live in a rurally isolated location. A friend of mine is coming over from Australia she's asked to come and see me we haven't seen each other for 15 years, I would dearly love to see her but I just can't face the look of utter shock on her face when she clocks me! I just want to hide away and never see anyone again. This is getting serious....... think I need to tell the doctors about how I am feeling, need for them to try something different, something with less horrendous side effects, or they need to address this chronic depression. Talking of side effects I've read about Herceptin recently and found out that it does affect your blood count didn't realise this and adds to the misery.....

Life goes on.....

We are still coming to terms with the tragic loss of our lovely Ted we also found out on the same day that one of my close friends mother had lost her battle with Myeloma Cancer we were dx at the same time 3 years ago and had built up a support network for each other both of us enjoying juicing and living life healthy then wallop she's gone, the chemo she had been on stopped working this coupled with a fall in the night where she broke her leg (she was 70) was the final straw and she was put in the hospice and never came out. We will be going to her funeral tomorrow and yet again I am reminded how fragile our existence really is. The weird thing was Christine was also an avid cat lover maybe Ted and Christine are together I know he's in good hands with her. Its so hard Teddy was such a character cat and loved the woodland garden. We walked down through bluebell wood this afternoon and it was stunning somehow it just didn't seem the same without Teddy he loved this time of year.

So, life moves on. Lee has booked up his training course for the offshore Rigging in May and will be away for a week and a half when he returns we will take the next step and see about getting him some offshore work for a 3 week period after which we will be able to afford to move which is what we both want now more than ever due to our recent loss.

I had an oncologist appointment to find out what the hell was going on with the 'something' on my Liver apparently the radiologist wont budge and continues to sit on the fence ie: he wont say whether or not it is cancer. So we are back in square one again and I'm to have yet another blasted CT scan in about 6 weeks time!!! because of the back log. I ask you this is so fucking out of order. I feel like giving up. Then I was asked about my migraines to which I replied yes still getting them infact they have increased last week I had 3 and so far I've woken every day this week with a migraine. Thanks to Sumatriptan I am able to function but its not good to wake daily with extreme nausea and a pounding headache so now they want to do an MRI scan on my head to determine if its cancer or just normal migraine stuff, like ya do!!! The only plus from the appointment was that she (registrar not onc) asked how I was doing on the Tamoxifen I decided as we were being honest and open that I would let rip about the shit. I told her about my aching joints and my massive weight gain nearly 4 stone! she agreed that the side effects were extreme (not everyone will react this way) and that weight gain was definitely a result of taking the drug, they have decided to re-check my blood and see if I am through the menopause if I am then they will take me off the dreaded Tamoxifen and replace with another AI that apparently does not cause weight gain although the joint pain might increase. I don't mind this as my joints are taking a bashing with all this excess weight that I've been carrying around. Bloody hope and pray I am through the menopause. It was left that I shall go back for results in July!! seems like a long flipping wait then! Going to see GP about changing hospital only trouble is I'm worried that if I do it now that things could be forgotten about during the transition, so not sure whether its bad timing to change at the moment.

I've been trying to paint but all this shit the deaths, the drugs, just general cancer shite doesn't inspire me to be creative. However I have managed to finish one painting and I've got some prints done so will drop off at a lovely gallery in Weston.

Will keep you posted as too the Liver and now the Head crap. xx

Signs and the Peony flower

Its been a week since I learned the fantastic news about being NED (see post below) and its finally sunk in I feel like I'm in a weird kind of limbo land getting rid or the lung mets has been my driving force for nearly 3 years and its not like I'm stopping any treatment any time soon still on Herceptin forever and Tamoxifen for at least 5 years (2 and half years so far) so you see whilst the mets have gone I'm still living with the effects of cancer and its drugs so its not like I can be totally free of it and of course there's that Liver thing, still no word from the Onc on that one but will keep you updated as soon as I hear from them.

Its been beautiful weather this week all the flowers are out which is very unusual for this time of year normally we only see the delicate and beautiful Snowdrop this year the woods are carpeted in them its like the Snowdrop's are in direct competition with the Bluebells that normally cover the woodland floor. As well as the Snowdrop's we have loads of Daff's, Primroses, Crocus's and Violets I love seeing the flowers but worry that its all too soon and its still warm the amount of ground frost we've had this year you can count on one hand.

Getting back to my constant battle with the drugs. Before I was dx I never took any form of tablet so since all this has happened I feel like I'm a right pill popper lol. Its Tamoxifen again and the terrible hot flushes I say the hot flushes but its all of the side effects from this dam drug that really pull me down. I was considering taking a drug break from it or even stopping taking it altogether, until I learned the news of being NED this has now changed everything, I can't stop taking the drug it could be the one thing or the combo of Herceptin and Tamoxifen that is keeping me cancer free so as much as I hate it and all thats its doing to my poor body I've got to try and cultivate a better attitude to it.

I'm trying to address all the side effects and deal with them all so that I can get on with taking it for the remaining 2 and a half years. To start with I'm dealing with the weight gain going from a size 8-18 in the space of 2 and a half years is no joke. I was shopping in a charity shop the other day and a lady working in there decided to take it upon herself to show me where the size 18+ clothes rail was needless to say this upset me for the rest of the day. So no more carbs that includes white potatoes, any kind of rice, or pasta and bread its all going out. Initially I was good with the carbs but its slowly crept back into the diet so a total veto of all these things should help the weight loss. I'm also walking for at least an hour and a half each day and feel better for it. I stopped going to Yoga because I was puffing and panting and could not get up off the floor very easily and others members tended to stare at me like I'd arrived from another planet (little do they know I have its called planet c), now that I've started walking again I am going to try and aim for going back to Yoga and might practice it alone at home for a while.

The next side effect that needs desperate attention is the hot flushes these are extreme although for some ladies its not that bad. Mine are horrific, I instantly feel very nauseous then I visibly sweat and go beetroot in the face it wakes me up in the middle of night and generally makes me feel ill. Its got to stop. I thought it would get better as time wore on but its got worse. To date I've tried wearing a Ladycare Magnet which worked for around 6 months but then stopped working, also stopped drinking tea and coffee (only use decaf) this works but if on the odd occasion I do have a proper cup of tea or coffee the hot flushes are 100% worse almost immediately! Supplements I've taken include Sage, Vitamin E, Evening Primrose Oil all of them dont work for me. Onc. told me not to take Black Cohosh or Red Clover as these interfere with the effectiveness of the Tamxoifen. In the beginning I was offered anti-depressants but found after only taking one that I was a suicidal mess and stopped straight away also was offered Megace but a side effect is weight gain to which I popped the box directly in the bin. I was taking the drug Clonidine for my hot flushes and again this worked but had the added undesirable side effect of making me collapse I had so many falls I stopped taking it. Onc. told me he had run out of drugs for me to try to stop the hot flushes so I've given up asking him.

In view of all I've said in the previous chapter I have now finally found something that could work. Its not available in any shop except on line due to the law changing on herbs and herbal medicine my local health food shop cant sell it but I have managed to get some online and await its delivery with anticipation. Its Peony Tincture apparently according to my very knowledgeable health food shop owner its very effective for ladies where Sage has failed. Unlike Sage it works on the body's thermostat rather than hormonally which is a huge added plus. I also wanted to add that weirdly enough the day before I found out about Peony Tincture I was out looking for this plant and didn't really know why I came home with a bunch of Red Peony flowers and put them in a vase I've since learned that the Peony they use is Red so something prompted me to go out and buy these flowers and I believe this is a sign from spirit guiding to something that will help me. We need to listen to our instincts and act upon them especially if they keep coming into our focus. I cant wait for my tincture to arrive it cost £15 delivered which isn't too bad but I'm going to look into this further, if it works then I'm going to attempt to make my own, will keep you all posted on this one.

Love and light to you all xxxxx

The best news ever.....

Wanted to share my unbelievable amazing news with you all. Saw my onc today he told me that " the lung mets have disappeared" and my lungs are now clear. I sat there in total shock and can't believe how lucky I am, it appears that something is working at getting rid of the bad cells. All the drugs ie: hereceptin/tamoxifen, jucing, hemp oil (early days), the supplements and the weekly spiritual healing are all worth while, obviously we can't say exactly what it was that obliterated them but the important thing to remember is that something did work. 

There was only one grey area and thats on my liver there is a mass there but they still cannot define exactly what it is it could be cancer that is stable or it could be fatty tissue, my onc is writing to the radiologist to ascertain what tests we can do to find out exactly what it is that shows up on the scans whatever it is has been static and non moving now for quite a long time and he wasn't overly worried about it although he did say we are going to keep an eye on it with 3 monthly scans. 

As for the subcut herceptin I'm to have my first 2 lots in the hospital so thats all booked in and I've decided not to give up on my hospital just yet.

Apologies to you all for not coming on sooner and posting but up until yesterday I was on  a huge downer and needed something positive to give me a boost, this is the best possible outcome I could of wanted. I feel like I can start my life all over again, I feel like I've been given a second chance. I am so utterly grateful to still be here.

Sending you all love and light
Sarah xxx

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......

and breath.......results are in.....and its brilliant.....

Sorry its been a while since I posted on the blog but I've been very busy and admit to completely forgetting about posting!!! which is unusual for me. Anyway back to the post and what is going on with me and my 'something' on the liver. I went for an oncology appointment on the 1st of Nov as per usual a registrar walked in the room and just to complicate things further she's indian not that I'm racist but her pigeon english made it hard to understand exactly what she was saying, luckily whilst we (thats me and my partner Lee) were waiting for the Dr. my BCN walked past the room and popped into to see me, she expressed an interest in why I was there (which amazed me as she's not shown that much interest in me before) she asked if she could be present in the room when the Dr. told me the outcome of the latest CT scan on my liver and I told her of course.

So the Dr. walks into the room and starts to go on about 2 lesions on my liver (yes I was sat there in total shock as no one had ever mentioned anything about lesions) she also said "but of course you knew that" too which I replied "uh no, I didn't know anything about lesions on my Liver I was told something like a shadow" at this point I'm starting to well up and I'm getting a bit angry because she's not understanding the whole reason I'm there is to get the results not too be told stuff I knew already that doesn't make any fucking sense does it!!!! It was at this point that my BCN pipped up (first time ever!!) "has Sarah got breast cancer spread on her liver? or not?" Dr. responds "we think it is fatty tissue and the lumps on the liver are benign (ie: not growing) I'm thinking thank fuck for that and was visibly relieved, BCN also looked relieved then BCN left the room and came back in with my actual oncologist Dr. K. I haven't seem him for nearly 2 years as I either got fobbed off with a registrar and in some part because he was dx with liver cancer a year ago and has been fighting it. He looked well and was very pleased to see me, he told me that "I'm not worried about your Liver its just fatty tissue (probably to do with the chemo and weight gain) and I'm not worried about your Lungs either they are stable and nothing is moving on that front.

We spoke about my treatment ie: Herceptin and Tamoxifen to which he told me they couldn't do anything about the Tamoxifen but he was going to suggest that I transfer from IV Herceptin to sub-cut Herceptin very soon in fact I've just had my last Herceptin by IV the next one will be sub-cut Herceptin. Pretty good job as my veins are pretty shot to pieces and I now live in dread of the next IV (the sub cut will be injected into good old fatty tissue to which I said "I've got enough of that" All in all it was one of the best onc. appt. I've ever had and I let out a huge sigh of relief on the way out the receptionist heard me and said " I presume it was good news, bless you" she's a lovely lady it must be hard working  in there as you get to know all the patients by first name, some survive and some don't, bloody hard job.

Liar liar pants on fire....

It's been a couple of weeks since d-day where Onc told me of 'something' on my liver.... I had another CT scan just on my liver last week although they couldn't use the contrast dye as my veins were playing up so not sure how good the scan image will come out, got everything crossed it goes ok and they can see what they want to see and that it turns out to be nothing other than scar or fatty tissue. Feeling like a fraud because I told everyone the first scan came back ok, why did I do this because nobody seems to understand me well I say no one what I actually mean is everyone other than the poor women who also are afflicted with this shit. My best friend, my mum and dad, my auntie and cousins and my friends they just don't understand the hell I am going through. Its partly because they believe what they have been subjected to in the press about breast cancer no one ever discuss's metastatic breast cancer or secondaries, I have too explain to people what it is I've got. One of my good friends was of the opinion that I had primary lung cancer I had too explain that its breast cancer that has spread not primary lung cancer what makes it all the more harder is that this is such a complicated and individual disease. Another friend can't understand why I'm putting on weight I've told her its the Tamoxifen but she knows someone else who had primary breast cancer and who stopped taking the Tamoxifen after 2 years and in her words "she's not fat" I feel exasperated by this blinkered way of looking at what is a massively complicated subject. There is no hard and fast rule with this shit, if we could anticipate what was going to happen to everyone subjected to this disease we would be well on our way to a cure. This time I've lied, told a big fat porker so instead of having to reiterate the bad news to all I have kept it too myself and will continue to do so unless I absolutely have to. I'd rather tell a white lie than tell them the truth, this is my body, my bloody cancer, my shit and I'm in charge.

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

CT scan and Beliefs and Prayers.......

Its been a year since my last CT scan so I was due for one, arrived at the hospital early on Sunday morning (they are so busy they need to keep the scanner working 24 hours a day) waited for half an hour and then was taken by a very tall chinese doctor with an umbrella out to a mobile unit (I've never had this procedure done in a mobile unit before) it was raining and in spite of the umbrella we still got very wet, then what seemed like an age before they finally got the needle in and that familiar taste of metal and the feeling of wanting to pee came over me the actual scan only takes 10 mins at the most but its all the other stuff that takes so long. By the time we got home I was feeling sick and headachy so took some codeine and later due to that not working a sumatriptan. Now its back to the waiting game and my follow up appointment on the 4th of October.

I've done quite a lot of research on all things cancer and what you can do to help yourself but I'm feeling a bit out on a limb at the moment so decided to give Penny Brohn Centre a call and book up on a free Living Well Course, the centre is in Bristol and basically I would like to find out if I'm doing the right things ie: juicing and not eating dairy or meat and to speak with someone whose a proper trained nutritionist find out if I'm lacking in anything would be good apart from all of that its free and you stay at the centre overnight which is a beautiful old building on the outskirts of the city, I feel the need to meet up with others who are on a similar journey and more importantly who are actively helping themselves to thrive and survive.

 Its been really hard recently as 3 of the women from the chat group on FB have died two of which share the same name 'Sarah', I used to chat to both of these lovely ladies outside of the FB group and can't quite believe that they are gone, its knocked the wind out of me and I feel the need to distance myself further from all things breast cancer, I suppose what I'm saying is that trying to live with these constant deaths and upsets aren't really helping me stay positive. The women that have passed away I knew through the FB chat group and the BCC forum and as far as I know they didn't really try going down the holistic approach, I'm still juicing although not daily as I can't afford it, I do it  3 times a week and drink predominately green organic juice, also as far as I am aware I am the only one who goes to a spiritual healer and the bottom line is I'm the only one doing very well on this regime, obviously I do take Tamoxifen and have Herceptin but I also try all the alternatives when I can afford it and will actively follow the advice given by healers and practitioners. Some of the alternatives are free. I wish the others would give them a go, but you can't tell someone what to believe in, they have to find it for themselves. All I can do is pray for those still fighting and send some absent healing with love and light.

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.

Back for a bit....

Hello all,
Well I'm back from the terrifically sunny and absolutely gorgeous Newquay it was truly great just too get away although I did miss the cats terribly. Plenty of walks and talks with my friend sandy we also managed to visit the Japanese Garden just outside of Newquay which is magical especially at this time of year, I took a heap load of photo's and ate far too much but what the hell I figured I deserved a break. Taught my friend Sandy to paint with Acrylics which pleased her and me enormously also did a couple of paintings myself. My partner Lee got on and has started the conversion so we will be going back over in a fortnights time for another week and so it goes on until its finished.

MRI results came through whilst I was away in Newquay and the doc's say I'm cancer free on the brain   so big massive sigh of relief and something to celebrate for a change. Hospital appointments are sort of dying down I've got a routine heart scan on the 31st of May and a lymph nurse appointment other than that I don't have to go to the dreaded oncology department for 3 months!!! first time in 2 years, so hallelujah to that. Although I have a slight nagging fear going on in the back of my head which is only alleviated by having regular scans, the doc's said I'd been stable for long enough for them to give my body a radiation scan break.

Other news is I'm still steadily putting on the bloody weight very annoying, this has been getting too me I try not to let it piss me off but I've spent my whole life as a skinny size 8 and now I'm trying on clothes that are a fucking size 16!!!! bloody tamoxifen!!!! When I say gets to me I mean I get really depressed and dive into the fridge I figure I may as well go with it even when I'm just having juice and nothing else I put on weight I may as well eat what the hell I like and be done with it. The worst part is not being able to fit into any of my clothes also I've taken all the mirrors down I can't stand looking at myself anymore because the person staring back at me quite simply is not the Sarah I knew before all of this shit started, its so depressing, god knows what my boyfriend thinks!

Hope you are all doing well and sending everyone some love and light
Sarah xxx

Two years today...

Its a cancer anniversary, exactly 2 years ago today I found out I had breast cancer 2 weeks later I found out it had spread on to both of my lungs, I'm still receiving treatments including tamoxifen by tablet daily, herceptin by IV every 3 weeks so far its all working and keeping me in a stable condition, I continue to be eternally grateful for any extra time I have on this planet, for my family and friends who love and care for me and to the beautiful cats that I share my life with. Life is good, getting steadily busier and gradually healthier by use of juicing and diet although I hate hate hate the new weightier me this is one thing I could do without. Can't quite believe it was 2 years ago that I went in to my local breast care clinic at the hospital, sat in the waiting room with my partner and brother we sat and joked about the crappy stories in the magazines, and then my name was called and I walked into all hell on earth, "its not looking very good sarah" the surgeon said in fact its very nasty and quite aggressive, dazed and confused I left the room to meet up with my jovial brother and partner who were still making each other laugh, I couldn't wait to get out of that waiting room, we'd been in their all day started off with an examination, then a mammogram, then an ultrasound and biopsy they had well and truly messed with my body and I wanted out of that hell whole. During the biopsy I said to the Dr " that doesn't look like a cyst" to which she replied " no I'm afraid its no cyst". When we did leave everyone was oh its probably just a cyst little did they know that I already knew it was more serious than a cyst.

The past 2 years have been the most painful, tearful, shocking, speedy, emotional, courageous, spiritual and happy of my life, I have lived, breathed, and virtually written a book on the subject of breast cancer those two words never entered my head until this time 2 years ago. Anyone reading this for the first time who may be worried or just been dx with the same shit can I hope glean some hope, support and understanding from this blog. I've been writing it to try too make sense of the mountains of conflicting information out there on the subject and hope if you are stuck in the same shitty position that you can at least get some quick answers to your questions.

Remember, I'm still here breathing and living, you can be too if you follow your heart, change your life, by whatever means possible and always for the better and look both inwardly and outwardly delving into the bigger picture.

"Just keep on swimming" from the film Nemo

Yoga, lymphedema, menopause

Started back at Yoga today after a break over the half term and I really was feeling it! It really does help if you keep doing it your stamina and flexibility increase and gradually you are able to do things you would never imagine you would be able to, Yoga is really good for you and I recommend anyone who can to join a gentle form of yoga ie: Kundalini or Hatha Yoga. The bunch of ladies that are in my yoga group are so lovely and always ask me how I am, I have told them what has happened to me I decided that they needed to understand why a woman whose not that old (45) was getting so out of breath and knackered doing the exercises, now I don't get the questioning looks from them.

Good news, I think I'm losing weight, finally!!! cutting out dairy and keeping sugary treats like cakes and pastries to a minimum are working, also the yoga with a good walk at least once a week probably has something to do with it. The Clonidine that I was on for my hot flushes I stopped about 4 months ago has finally worn off, there was a multitude of side effects from it one being weight gain and fluid retention, I'm putting up with the hot flushes and actually they aren't that bad at this time of the year, also drinking more nettle tea which helps with fluid retention and I believe is helping me to release all that water, as I've been going to the toilet more often.

The lymphedema on my right hand side of my body is being moved around by the wonderful lymph nurse who gives me a special massage once every 2 weeks also my partner has learned how to do it for me so if its really bad I get him to push it around this massage always makes me want to pee more often as well. I'm no pre-cancer size 8 but at least I'm not putting anymore weight on and feeling swollen all over my tummy, I think my organs were swollen from the chemo and its taken all this time for them to go back to normal, still got a bloody tummy tho but then what menopausal woman hasn't got a tire tummy it appears to be the norm unfortunately.

My girlfriends who haven't been through menopause just don't get it, however I have warned them what is too come, the menopause is definitely not a walk in the park, hormones are so very important for a woman they govern your life you don't realise it until your not producing them anymore or in my case blocking them with drugs.

Day four of taking the beta blockers that my GP prescribed for the migraines and so far so good, don't want to say any more about that just incase I jinx it!!

Love and light to all xxxxx

Tamoxifen, joint pain......

I also forgot to mention that I suffer with at times extreme joint pain in both feet and both thumbs its the searing arthritic sort of pain and mainly gets me when I first get out of bed, takes me about 10 minutes to warm up and walk properly I kind of shuffle for about 5 to 10 mins, dammed Tamoxifen makes me feel old before my time by at least 20 years! I have requested a bone density scan as a result of this not too be confused with the bone scan I had recently that was in the nuclear department of the hospital, that particular scan came back fine.

Tamoxifen argument.....I'm off.....

I didn't really want to post this today but someone has got my back up...... as usual it's about the great Tamoxifen debate it was over this very same subject that I left the BCC forum as discussions turned into heated arguments and then just plain old nastiness. Tamoxifen strikes again it would appear, now I'm not a horrible bitch and until this shit happened to me I never complained ever to explain, I joined the FB chat group because things were getting out of hand and nasty on the BCC forum, the chat group I found was brilliant and in the beginning only a handful of us using it, it was so refreshing to be able to just say what was on your mind without having to answer, explain or justify why you said this or that. Last night I jumped on a conversation about Tamoxifen some one mentioned that her BCN had told her that Tamoxifen didn't cause Osteoporosis my reply went like this "Tamoxifen good for the bones what is your BCN on??? I mean I know we are all on drugs but seriously!! My BCN is also pretty rubbish she's nice but not great I've hardly spoken to her since all this began every time I do speak to her she just say's "Ring me whenever you want for anything at all" so I ring her and say I need to swap my prosthetic boob as I've put on weight and the good boob is much larger now, so she say's oh you have to go and see your GP who then has to write a letter and then we will make an appointment for you to come in and be examined and then you might get a new prosthetic, its this sort of unbelievable nuttiness that drives me bonkers!!!! end of rant xx love to all sarah xx" to which I got this reply "Sarah tamoxifen is good for your bones and doesnt cause osteoporosis, but AIs can cause bone degeneration. infact tamoxifen and other SERMs used in postmenopausal women actually has been found to increase bone density campared to post menopausal women who are not taking tamoxifen.... im also a BCN but if you do a search on google scholar for tamoxifen and bone density research you will find that the woman in the clinic is mistaken and the professionals are actually corrent in this instance... however thats not to say your BCNs might still be numptys. :) to which I replied " thanks for your input and with respect I don't question your knowledge about this subject especially as your a BCN, I would also like to point out that the woman in the clinic is not the only person I have spoken with who blames tamoxifen for getting osteoporosis, both women were very young when they developed it and I'm wondering if age and menopausal stage have anything to do with it? I found this information on Tamoxifen and posted it as a new document at the top if anyone is interested. For the record my BCN has not been 'there' for me through this I blame both the bureaucratic policy's she has to follow and the fact that she is massively over stretched with far too many patients." to which I got this reply its the last sentence that really annoys the fuck out of me 
"you might find these useful....http://www.mhra.gov.uk/home/groups/l-unit1/documents/websiteresources/con2032892.pdf from 2007 says one brief line that tamox does not affect bone density.... and this is from the MRHA in 2012.... doesnt mention it at all.... http://www.mhra.gov.uk/home/groups/par/documents/websiteresources/con152698.pdf somebody blaming tamoxifen and tamoxifen actually being the cause are two completely different things.... people are often looking for causes but there is no evidence that support your theory just some people who may have got osteoporosis anyway or possibly even earlier had they not been on tamoxifen.... there have been hundreds of studies on this and nothing to show any relation to BMD. in letrozole and other AIs there is a know causative link.... not wanting to argue but posting a document of somebodies opinions is not the same as the hunderds of research papers indicating no link".

Well sorry for breathing saying "not wanting to argue" was in my opinion very antagonistic and put a squash on anything else I might of wanted to say and a deliberate put down and shut up kind of comment, the chat group is on Facebook it is not monitored and therefore is supposed to be a free space where we can all voice our opinions and views without any fear of repercussion this has now changed and I've left the chat group and don't want anything more to do with it.

Just to put you all in the picture since starting the dreaded Tamoxifen I have put on over 2 and a half stone according to a few doctors and nurses at the hospital Tamoxifen is not to blame but then my onc and another nurse told me it was the fucking tamoxifen so you see all the information you get is totally conflicting and I don't care what some fucking medical statistic company says about this or that I listen to real people that a) I've spoken with and b) my own research personally I believe she was only getting angry because I slated a fellow BCN colleague and I have a horrible feeling I've already had a run in with this woman on the BCC forum as her name and avatar are the same of course she could be an internet troll in which case go fuck yourself. I didn't ask for her opinion on my opinion and I was not telling somebody else what to think they can think for themselves, I have a right to my opinion and I'm sticking with it I really don't give a flying fuck what anyone else thinks, I would never pull someone else up on such a sensitive issue she has in my opinion ruined the chat group for me and for that matter for everyone else because now none of us are allowed to voice an opinion for fear of being scollded. There is no right or wrong I was only voicing a view and being open to which end I feel like I don't belong in the chat group that has supported me and in turn where I have supported others in a similar position. Its a shame because I've been quite involved with it and was doing some stuff for the SBC website. Oh well back to dealing with this shit on my own without any external support.

Thank god for my blog where I can voice whatever I want without any fears.

Anyone who I added as a friend on FB I can still communicate with and will do so by private message only, like I said its not everyone in the group just one person.