Massive news.....

Last Friday I went in for the results of my latest CT scan, the last one I actually had with dye contrast (they managed to get a needle in) so I was secretly dreading the outcome (you can see more with the contrast) basically I've got the all clear! Yep its happened I've got the all clear, the cancer on both lungs and liver has disappeared or as the Onc's Reg explained its so tiny we can't detect it on the CT scan. This is the best news ever........I am such a lucky, lucky, lucky girl. I knew about the lungs from the start but only found out by accident about the liver when I read a scan report that mentioned lesions on my liver!!! So for them to declare no sign of disease in both lungs and liver is mind blowing. Whilst I was feeling elated the Onc's Reg quickly came back to me with "but of course your never really going to get rid of it, its always going to be there, eventually it will come back, but we will deal with that as and when it shows itself, in the meantime your to continue indefinitely on Herceptin and Anastrozole" and swiftly back down to earth again with a thud. Yep they sure know how to drag you on that roller coaster don't they? I don't care what they say as far as I'm concerned I'm cancer free and I'm not going to let anyone bring me down about this news.

I am living proof that cancer by its very nature of being random can for no reason of its own just disappear. Obviously I've been down the clean and green path (although have too say I've fallen off the wagon recently and enjoy chocolate, biscuits and cake), I've taken every supplement known to man, taken a shit load of cannabis oil (especially in the first year of being dx), I've gone down the conventional route of being poisoned, cut and burned, all in all I've thrown everything at this shit and something has worked or is working and long may it continue.

Whilst walking on air out of the oncology department I waited outside for the other half to pick me up, another lady was waiting and we got chatting, she told me about her dx in her 40's (like me) over 20 years ago!!! with breast cancer, and that it had only just decided to show itself again and now she has all these options and drugs to try out, she told me to stay positive and live my life, she was a breath of fresh air, I figured that as I turn 50 this year if I get another 20 years of life I'll be 70 and that would be ok with me. I wouldn't want to live any longer than that anyway (after watching people in there 80s, 90s including my own grandmother who lived to 103 once you get to a certain age its best to go peacefully than to hang on to life that is full of illness and suffering).

In view of trying to maintain a normal-ish life I wont be posting as often as I used to and whilst this blog has been a constant source of comfort and help in venting and ranting, I would like to try and put the monkey on my shoulder even further behind me and in the distance. Of course I will from time to time post and will keep all of my readers up to date with surgery etc If anyone would like to speak to me or discuss anything at all please leave a comment and I will get back to you.

Remember to LIVE FOR THE MOMENT and SAVOUR EVERY SECOND.
LOVE AND LIGHT TO ALL  OF YOU. XXXX

Scan Update

All is ok, I had a phone call from my Onc's secretary yesterday telling me that the scan results were fine....... and breath. I was surprised that no one had sent me a letter with a results appointment but then this has happened before, waiting endlessly for results seems to be the new normal. See post headed Scanxiety.

A reprieve for 6 months YAY, no scan until September, but due to continued Herceptin I have to go in for an oncology appointment every 12 weeks.

Thyroid.......that old chestnut!

Can't believe I'm back in this spot again...... the dammed thyroid conversation......... Last year it was suggested to me that my thyroid might be playing up so I went for the test with my GP, this first test did show a problem with my thyroid being very sluggish but the protocol for these tests is you have one test and re-test 3 months later, so this we did and the second test turned out normal. Due to this my GP told me they wouldn't be putting me on thyroid medication as the tests weren't consistent. At this point I dropped it and tried to move on although I still suffered with symptoms associated with an under active thyroid.

Fast forward to last week, I'd been experiencing bad fatigue and when I say bad I mean it! Everyday waking up late and exhausted, some days not being able to climb out of bed or just about drag myself to the sofa where I slept for hours during the day!!! Obviously this was becoming a problem so I phoned my breast cancer nurse and told her about it, I even suggested maybe it was the Herceptin, she didn't agree that it was Herceptin but told me it was a sign of under active thyroid....... here we go again!!!! and as I'm still putting on weight she reckons its a sign of an out of balance thyroid and told me to go back to my GP. So there it is, what to do? going back to my GP and being re-tested, I'm currently not feeling fatigued this week but think when I am fatigued they should conduct the test, I think its up and down with the thyroid which is why we can't seem to get to the bottom of it. Prior to all this cancer shit I didn't have anything wrong with any of my bodily functions including my thyroid.

So want this to get sorted out its starting to really get on my nerves.

Blood tests, scans and anxiety....

Last friday I had my 3 monthly CT scan I'm waiting for results and as is the normal for my hospital it could be some time anything up to 8 weeks (I'm not kidding!!!!). On Tuesday I had my 3 weekly Herceptin shot in the leg which has left a big black bruise and tomorrow I go in for a blood test to verify the status of my thyroid and also to check my blood sugar levels straight after that I go onto the hospital for a heart scan (Herceptin affects your heart) so its been a week of scans, tests and anxiety. I always feel anxious waiting for results which is understandable but its also the anticipation of having to have a cannula put into one of my poor collapsed veins it stress me out no end, they never get it right or listen to me when I tell them don't try that hand etc so subsequently they try 3 times and then hand over to a doctor who invariably looks about 10!! who tells me not to worry it wont hurt and he'll/she'll find one and hey presto it always does bloody well hurt and they have a good poke around to try and find it. WHY DON'T THEY JUST USE MY FOOT urghhhhhhh...... its so fucking annoying.

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.....

I've hit the f*@k it button........

WARNING EXTREME SWEARING

As the title of this post suggest's the hospital have failed me once again. The final final straw was they forgot my Herceptin (this is the wonder drug thats keeping me alive!) not a minor thing fairly major in my opinion this coupled with the fact that my CT scan was booked for June with results in July way way to long to wait and other stuff like lying to me they told me that I was one of 2 patients in Devon that received my drugs via health care at home and that it wasn't cost effective, this is a down and out lie as I talked to the nurses that used to come to the flat and give me my drugs they told me there were at least 25 patients. So the upshot is I've bitten the bullet and gone to my GP who is referring me to Taunton hospital, I've heard good things about this hospital and kept thinking about changing hospital but there always seemed to be some scan or other vital appointment looming on the horizon that kept me going to Derriford. My GP agreed that it just wasn't acceptable and as a result I have been left feeling like I've lost all confidence in my hospital. When its literally a matter of life or death you have to go with what feels right and Taunton definitely does feel right. Yes its a bit of a slog 100 miles to be exact but its got to be worth it to get top treatment. Taunton hospital is newer and has a brand new cancer clinic including cyber knife it goes without saying this makes it all the more attractive to someone with advanced breast cancer. Another plus is that as Taunton has the approval for delivering health care at home for sub-cut Herceptin I will be able to have it delivered to my door, crazy isn't it!!! I live out in the sticks and work from home also don't drive so its difficult for me to get to the main hospital and as I qualify for health care at home I would like to have it at home and not be fobbed off with a load of shite.

Been hopping mad about NICE (National Institute for Health and Care Excellence) (not so nice) decision to pull the life saving drug TDM1 (Kadcyla) therefore anyone who is not already receiving this drug like myself wont be able to apply to have it in the future. So if Herceptin fails me then there is nothing else I can try. To say I am mad angry and plain fucked off is an understatement. Again I ask why oh why do we bother raising funds via charities so they can use that money to develop drugs that they then wont give to us!!!!!! crackers huh!!!! The argument goes that it cost 90,000 per year to treat someone as the drugs company that developed it Roche charge a fortune for it, lets not forget that its us that has raised the cash in the first place for the wankers to develop it in the first fucking place. Also that it only gives 6 months of extended life. Bollocks in a nut shell this is a complete fabrication I personally know at least 5 women who are receiving this drug who have been on it at least 4-5 years and they are happy, healthy with minimum side effects more importantly they are alive!! so to say it only extends by 6 months is giving the general public the impression that its not worth spending all that money for such little amount of time. Absolute fuckers......I hope they all rot in hell........heaven forbid any of those that make these decisions might need the fucking drug...... So now I've got to hope and pray that Herceptin works for a very very long time otherwise I'm as good as dead........thanks NICE/Roche you fuckers......

Other news Mitzi (my mummy cat) has returned from her wanderings, it was beginning to look like we'd lost 2 cats in the space of a fortnight!! she came home last night at 1 in the morning with rabbit fleas on her ears and a tick on head of course we had to remove the critters before we could go to sleep, however all is forgiven just to have her home safe with us.

All in all a very bad week infact a hell of a month can't wait for sodding April to end. Here's to the 1st of May lets hope its a darn sight better than this bullshit.

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

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.

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

The best thread ever.........more on Herceptin

Just poped on to the BCC forum and found this totally amazing post by a woman who has secondaries and has been on Herceptin (my wonder drug) for the past 10 years.

Well here I am again, one year on, updating that I am still here and well. That's ten years since secondary diagnosis of mets to bone and liver and nine years on Herceptin as my only treatment (just had injection number 157).

I do have other exciting options on the treatment horizon too, the first being subcutaneous Herceptin. Not sure if this has appeared on the forums (not be here for a while) but in summer some time we may have the option to have our Herceptin by subcutaneous injection that the patient will be able to deliver themselves at home - or more importantly on a long holiday away somewhere!!! This will be a bit like a diabetic with an epi-pen, but bigger more like a box. Just think, it will be like slipping the leash from hospital - we will be free! 
Secondly, and this is really scary, there is the possibility of stopping Herceptin altogether. 
Some long term Herceptin patients (8 years plus) have come off the drug altogether with, so far, no re-occurrence. This is mainly in the US but there is one centre in England that has started doing the same. Obviously the risks are unknown and I shall be in the 'wait and see' category for some time to come I suspect, this is all so new and groundbreaking. There is even (dare I even write this......!) whisperings that these women may be cured. We secondary BC sufferers have always been told that we can only ever be NED and never be cured but oncologists are daring to voice such a possibility. Of course we are only talking of a small number of women (only 30 percent, or less, of breast cancers are HER2 and respond to Herceptin and of that number a possible 10 percent seem to survive long term) but I dare to dream - dream of a disease free future, for myself and all my sisters out there.

and a few posts down on the same thread came this brilliant peice of writing by another fab lady on the BCC forum (I'm posting this because it helps me keep this valuable information somewhere I can access it).

Having read some of the more recent studies about Herceptin, I think you're right in that the main value of Herceptin is now thought to be it's ability to flag up cancerous cells so that the immune system can recognise and attack them (as we all know under normal circumstances the immune system does not recognise cancer cells). It was once thought that Herceptin worked by reducing the number or receptors on the surface of the cancer cell, but research has shown this is not always the case, as cancer cells can actually coat themselves with a substance that prevents the Herceptin reducing the number of receptors.

The main problem with Herceptin though is that it doesn't work for all patients There are some studies which suggest it only works for about 40% of patients, and this is why many Her2 receptive patients go on to have Lapatanib. However, there is a new generation of Herceptin based drugs that have just been approved by the FDA in the US called Kadcyla (they are being trialled here under a Trial name). These drugs will hopefully make Herceptin work for a larger number of patients, and will overcome the ability of Her2 cancer cells to coat themselves. They work by combining Herceptin with a very potent chemotherapy drug and an another agent. The drug works by using Herceptin as a vehicle to locate and transport the chemo drug. Once located the agent releases the chemo directly into the cancer cell. So less damage to healthy cells, and fewer side effects. I hadn't heard of subcutaneous Herceptin, but if it can reduce the incidence of heart disease it sounds great. I do think though that Kadcyla is going to replace current Herceptin within the next couple of years, simply because it will be able to treat a greater number of patients.

Breaking News..........New drug for HER2

New drug for HER2 positive breast cancer being developed over in the states here's the link to more scientific information http://www.roche.com/media/media_releases/med-cor-2013-02-22.htm. Hopefully it will filter through to the UK at some point. xxx

Mad as hell....

Just read about NICE (National Institute for Health and Clinical Excellence) which has decided in its wisdom to reject the new drug Everolimus for HER2 negative, hormone receptor positive advanced breast cancer, Why? you may ask yourself because its expensive, again its not about trying to find a cure or at the very least an extension of life for those affected as per usual its all down to money.  Not so fucking NICE I say. I am HER2+ and receive herceptin which not so long ago was only given to those as a sort of post code lottery, now everyone gets it, so ladies who would fit the right criteria for receiving Everolimus don't despair if we all stand together and make a loud noise WE CAN CHANGE  THIS. Here's the link to more info http://www.telegraph.co.uk/health/healthnews/9943242/Breakthrough-breast-cancer-drug-too-expensive.html?fb and http://www.breakthrough.org.uk/media_centre/news_views/nice_reject_drug_1.html

I'm willing to do whatever it takes to make sure women who need this drug receive it.

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

New Drug for HER2+ Breast Cancers

I stumbled across a post on the Breast Cancer Care forum regarding a new drug called Kadcyla is a new generation of Herceptin used to treat Her2 cancers that have progressed after treatment with Herceptin and Tykerb (Lapatanib). I believe it combines three drugs (1) Herceptin (2) a chemo (3) a chemically modified agent that delivers these two directly into the cancer cell (so no chemo SE's. Have provided a link to article about it for anyone who is interested. http://www.medicalnewstoday.com/articles/256790.php