Flat chested and happy.........

Its been a fair few weeks now down the line since the 2nd mastectomy and I am feeling a lot better. A couple of weeks after the op I wasn't so impressed I had an infection in my wound which needed antibiotics and I also needed to have the area drained twice again not impressed but managed to get through it, I kept reminding myself I've been through worse and survived and I was right. what didn't help was catching flu around new year that really wiped me out and made it very difficult I was actually throwing up and the pressure of heaving made my scar area fill with fluid hence having to have it drained twice. The bug was much worse than the operation and I am so glad its all over and done with.

New Year new body, new me......


Results in from my latest CT scan are good or rather everything is stable so all in all very positive. I am now just looking at one hospital appointment next week for my 3 weekly Herceptin and then a break from going to hospital or appointments for at least 3 weeks and no intermediate appointments. YAY...... feels good to think I'm through the worst of it, with CT scan done, Oncology appointment done, bloods and echo scan done. Phewwwww

Feeling a lot lot lighter and not walking with a bob out of balance or weird gait anymore as the boob is gone and makes me feel normal I know that sounds strange but the one massive boob was such a pain in the arse and made me feel so abnormal, its the best thing I've ever had done since this whole thing started and I am hopeful that this year will see an improvement on all health fronts because of it. Migraines whilst still there are not as frequent as I was getting them and not quite as intense, neck pain on my left hand side is also not as bad so whilst the migraines cannot be blamed entirely on the boob now its gone I have noticed a difference and its for the better. I am feeling a lot happier although of course it goes with out saying I would of been at my happiest if I had never gotten fucking breast cancer but hey ho.......

All in all everything is proceeding in a positive way and I am feeling a lot better about myself and my new life living with secondary breast cancer.

Back to Life and the hospital

Last week was horrific!

It started last Tuesday with a visit to my GP for what I thought was a bladder infection, due to my history she couldn't rule out possible cancer spread so suggested I go to A&E and have an MRI scan done that day! Of course this scared the shit out of me but I went along with it. 4 hours waiting in A&E having blood and urine tests and still none the wiser then a chap shows up with a wheel chair and promptly takes me off to a ward where he informs me I am to spend the night! Around 6 in the evening 2 chaps show up and wheel me in my bed off to have the MRI scan, I was in the blasted thing for 40mins with all that noise so came out of it with a massive migraine, I went back to the ward and spent a extremely nervous night there, terrible night not being able to sleep, noisy, people throwing up, people constipated and straining to go next to me, utter nightmare.

At around 2.30 my Oncologist and team came round and we went through everything, apparently the urine test were negative and the MRI didn't show any new lesions phew.......... however, now they want to do a CT scan on my brain, so off I go again in my bed being wheeled by 2 chaps to the CT scanner, scan complete they dragged me back to the ward where I sat nervously waiting for results.

Results through and no I haven't got breast cancer on my brain, the only plus out of all of this is that the scans were done in 24hours and I got the results almost immediately, normally I have to wait 6 weeks for results!

It was still a harrowing experience and one I would not wish on my worst enemy the waiting game, the needles, no veins all the usual fears wrapped into one huge shit sandwich.

Whilst I was cancer free the scans did pick up problems with my back and neck that will need attention and are a result of being on Herceptin and the other drugs affecting my bone density. Back aches, neck spasms are now part of the new norm for me.

Life with cancer is resumed and jolts me back to the reality of what I am living with.

Wish it would just fuck off.

Getting the balance back

Its been a while since I last posted and I am happy to report, all is ok on the cancer front and I am adjusting to life without the ovaries. Hot flushes are still an unfortunate part of my life and I do hate them BUT winter is coming and the weather is cooler so life becomes less hot and bothered.

Last week I had a appointment with my new oncologist Dr G. is amazing I really get on with her and 

its been a long time since I actually spoke with a full fledged Onc. as my previous Onc. sadly died of liver cancer however, I always seemed to be dealt with by registrars. I've complained a lot of times about feeling out of balance, my size 32 chest has grown to a size 42 on the remaining breast and its a pain, not only is it massive and heavy its exasperated by the fact I can't wear a bra, I've tried every bra known to mankind and none of them are supportive and pain free. My problem is I had a lot of lymph nodes out and due to the fact that I was skinny (size 8 back then) the nodes were in with all the muscle which my surgeon had to dissect, it took him ages and he had to cut through muscle, my armpit area and my torso on the right hand side are badly scarred and so whenever I wear a bra no matter what type it digs into my scar tissue and ends up feeling very painful, so much so that I have to take the bra off after only half an hour! So this leaves me not wearing a bra most of the time and feeling very out of balance, Dr G. could see how out of balance I was carrying myself and suggested that she would refer me to a breast surgeon who could perform a mastectomy of the left hand side breast as a life enhancing operation. Fantastic! So I am now waiting for an appointment to see a breast surgeon and whilst they have a policy of not operating on a healthy breast they might when they realise how out of balance I carry myself and the ramifications of this on my body and life. Considering they perform breast enlargement on the NHS I think this isn't a big ask, considering what I've got and what I've been through. Dr G did explain that it wouldn't be this year as its not an emergency which is fine by me, I'd rather have it next year anyway. So fingers crossed this will happen and I will be rid of the massive boob that blights my life.

Bra-less

This is the first time I've shared my remaining massive boob problem. So I've gone from a size 32aa to a 42c its crackers and its taken me time to adjust to the massive boob but Im sick of it, its a constant reminder that Im ill or have been very ill, it hangs there useless and big and shouts out big boob with a problem to all that manage to chance a look. My main problem is I can't wear a bra it hurts me so much, I've worked out that when they took the lymph nodes out they must of taken some out of the torso of my body because I don't get lymphedema in the usual place ie: my arm its on the side of my body where the bra strap crosses, I kid you not it bloody kills if I put a bra on, I wore a bra to a wedding and after an hour wearing it I had to take it off in the loo's as it was killing me. So this leaves me bra less the majority of the time and having to wear things that cover up constantly. Obviously this is having a knock on effect and doesn't help my self confidence at all, the big boob is getting bigger and more droopy and I feel ugly and shit. I wished they'd of taken both the boobs at the same time at least I would be balanced, but they refused saying "I never operate on a healthy breast" uh I have secondary breast cancer both of them are pretty unhealthy. So I've phoned breast care nurse and mentioned this problem to her, she didn't realise this was the reason why I don't wear a bra and sympathised with me but told me this posed a problem that she didn't know the answer to so I'm waiting to hear what she comes up with, she did mention about reconstruction, something I decided against when I had the mastectomy but this might help my current bra less situation, I don't know but will keep you all posted.

Blushwood Berry and EBC-46

Over the years I've come across loads of supposed cancer cures, most of which are proved not to cure cancer, so I was kind of sceptical when I chanced across this its a tree called Blushwood from Queensland, Australia. Scientists have extracted a component from the berry of the tree which they have named EBC-46 which has been proven to kill cancer tumours. So far they have tested it successfully on animals and have just started using it in clinical trials on humans. The cancers that have responded to this drug or skin, colon, breast, head and neck. It works by making the white blood cells within the body react to the tumour and kill it. Here's a couple of links and info I've found out on this, I have to say from what I've read online it seems very promising certainly brings hope. In fact in Australia people have been trying to extract there own cancer fighting drug from the plant and stories are circulating that they have been poisoning themselves!  to which I have to chime in with isn't chemo a poison? and doesn't chemo derive from a plant?

Big pharmaceutical companies won't like that a berry could potentially blow them out of the water leaving them high and dry and not making the billions they do out of cancer treatments, that don't work. Just saying....

https://www.youtube.com/watch?v=mqCNMzFGc8k

https://www.theguardian.com/society/2014/oct/08/cancer-tumours-destroyed-by-berry-queensland-rainforest

The month where if anybody says the P word to me I'll scream

Yes its that time of year again the air is cooler (thank god my hot flushes are off the scale!), the nights are drawing in, the leaves are falling all of these things I love but what I don't like is the bloody way people now call October Pinktober or words to that effect.... it makes my blood boil! Good natured well meaning people are duped into buying a product because it has the breast cancer logo splashed all over it and coloured it pink, what these good people don't realise is only a tiny amount of the money taken for the product actually goes to the breast cancer charity, hardly anything at all, certainly not enough to make a massive difference it just means that every October these companies get extra exposure under the cover of charity. Its a massive marketing campaign and yet again is clouded by money.

Back to the reality of living with secondary breast cancer, last week I had my flu jab (as I am immune compromised) which made me feel terrible I spent the whole week in bed, feeling very sick, achey (more than the usual) and plagued by migraines......the bain of my life. Today I awoke to the sinking feeling where I feel sick to the pit of my stomach and then the head throbs back on the sumatriptan and knock out drops....... just woke up and the whole flipping day has gone again.

Saw my GP last week and am to have another blood test for the thyroid so onwards and upwards, will keep you all informed if it does work out to be the thyroid gland.

Still feeling hot hot hot! but my lovely GP has upped the anti-depressants to 20mg a day so that should start taking effect shortly on the flushes that are the second bain of my life.

Best get on with whatever I have left of today.

Tricky Times

Its been ages since I last wrote a post so I thought I'd better bring you all up to date. My father had a stroke earlier on this year and after nearly 8 weeks in hospital he was released, unfortunately they released him way to early, he wasn't ready to come home and the house wasn't ready for a severely disabled person. So after a lot of phone calls and a couple of weeks spent at my mum and dads house we finally have managed to get nursing care for 4 weeks after which they will review and see if he needs any further care. I don't want to go into it on here but its been a nightmare! not just watching my dad struggle around the house with the stairs but also with all the red tape to go through just to get some help. It was made all the worse when my mum went down with flu which she then passed on to dad who already had pneumonia earlier on in the year all this put his recovery back to being bed ridden and so I was asked to come up and care for a fortnight, this I did, but I'm physically not able to lift him etc so was relieved when the nursing care finally was sorted. Worryingly my father was referred to the lung cancer department and was supposed to go for a CT scan earlier on in the year after his bout of pneumonia, due to the stroke this got left by the wayside and forgotten about, however today he faces a CT scan to check out that earlier niggle. Stressed out or what.......

As for me, I'm sort of ok obviously feeling frazzled by all the stuff going on with my dad but also other things are upsetting me involving so called friends and loyalty. Again I don't want to go into it but am feeling very low, initially I was disappointed but now I'm just plain angry, this will pass, I am used to these feelings but a trust has been lost and I don't think I can forgive and forget this time, I feel this is the end for one significant friendship as I just cant see a way around the problem other than conceding defeat and carrying on as if nothing has happened, the later of which is totally out of the question and is something I have done ie: bury head in the sand over and over again. Enough is enough...... I am sad but also glad to of been shown the lies that have been told allowing truth to prevail.

Health wise I am doing alright although I've had a few heart palpitations and feel my stomach swells up at certain times of the month, not sure what is going on there but my skin around my abdomen becomes very tight and I feel about 9 months pregnant even though I know I've put on weight its not anything to do with weight it feels like water retention the sort you get before a period so I suppose I will have to go back to the Dr's to find out what the hell is going on. Have too say I am so sick and tired of all this shit..... Dr's, hospitals, appointments, ailments and symptoms urghhhhh.............. Wish it would just all fuck off. At times I have considered just stopping everything, no more Zoladex no more Herceptin, just see what happens, at some point in the future I am going to come off these drugs, people have been on them for 10 or 15 years but I did read somewhere that in America some life time patients have been weaned off Herceptin and found no repercussion from it. When someone tells you that you've got to be on it for life its so hard to know how your going to feel about that only time will tell. Its been 5 years 6 months since this all started thats a long time dealing with something on a daily basis, living in fear of the dreaded 3 monthly CT scan results and going to the hospital every 3 weeks to have a potentially life saving drug. Apologies this isn't very positive is it but its how I feel at the moment and thats on Citrolapram anti-depressant maybe they need to up the dosage as the hot flushes are off the scale (not kidding sweat pouring down my face) and my moods are at an all time low!!!

Onc. appt. and a Cancer Cluster

Hi all, a quick up date on the results of the latest CT scan and its good I'm still in the stable mabel so can't grumble at that, they will continue to keep an eye on me and scan me etc. No real moans about the appt. either which makes a change the registrar that delivered the news was very nice and very happy to give me some good news. So all is ok at the moment.

Now on the subject of Cancer Cluster I feel I need to share that I've recently found out that 3 of my  ex work colleagues have also been diagnosed with breast cancer 2 of us with secondary breast cancer. This news has floored me!! Could it be down to where you work which in some way has caused cancer? I keep asking myself is it just a coincidence and just cannot accept that this is so. We all worked in an small open plan office at the back of a very old tudor building for around 6 years, I worked as a designer on an old style Mac and the others were proof readers who sat behind me. One of whom is currently fighting for her life as the bastard has spread onto her brain. We're all around the same age. I worked there from my mid to late 30's and then moved down to Devon where I continued to work for the same company. So, what to do about this ummm...... so I've been advised by a fellow breast cancer patient to contact the Alliance for Cancer Prevention Authority here's there link http://allianceforcancerprevention.org.uk/#!/about/ and tell them the story. I'm also contacting former employee's to find out if there is anyone else who has had a breast cancer dx who worked in the same office. Once I've collated the information I will work out what to do about this. I can't leave this alone its just too much of a coincidence and if when we get to the bottom of this it does work out that I was working in a ticking cancer bomb heads will fucking roll. I owe it to myself and all the other women who have worked there and have or are unfortunate to develop breast cancer and all the women that haven't worked there but are going to, someone has to do something and that someone is clearly me.

Here's a link to a famous breast cancer cluster in Australia where 20 women were dx all working for the ABC media corporation in the same building. https://www.youtube.com/watch?v=vBqYNysfBlo
and another about a group of men nearly 40!! based in an American arm camp all dx with breast cancer
http://www.motherjones.com/environment/2012/05/camp-lejeune-marines-breast-cancer-florence-williams

Prolapsed WTF!

Ok this is a difficult post to write and I can't quite believe its happening to me BUT I've now got a prolapsed uterus again another secondary cause from a) being in menopause early b) continued cancer treatments ie: hormonal as lack of oestrogen can also cause it c) coughing so bad over xmas and new year that I've strained myself and think this is what finally caused it. I'd been feeling that things weren't right uh humm....... in the nether regions for a while and realised after some research on the net what it actually was. I'd found that something was sticking out where it never did before a sort of dare I say it lump....... as you can imagine finding any type of lump anywhere on my body tends to freak me out! I did mention this to my GP who decided to ignore this particular problem and chose to deal with the other things on my list as long as your arm. I've got a Onc. appt. this Friday morning for results of latest CT scan so will be mentioning this to them if they don't deal with it then I suppose I'll have to ask either GP or Onc. to refer me to Gyno dept. WTF this fucking disease just keeps on giving doesn't it? So been doing my pelvic floor exercises as many times a day as is humanely possible in a the vain hope that I can avoid any further surgery, I'm shitting myself over this one urghhhhhhh......

Will keep you all posted on this and the results of my latest CT scan.

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

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

Changed name.....

Hi all, just a quick note to explain that I've changed the name of this blog from 'Surviving the beast within' to Living with SBC (secondary breast cancer). I decided that the old title was too dramatic and I wanted to tone down the 'Beast' part so I've changed it to something that is a true description of what I am actually doing which is living with it. Hope this doesn't confuse anyone and apologies in advance if its inconvenienced anyone. Sending you all love and light sarah xxx

Where's your head at?

Ok so I think its about time I filled you in on where I'm at at this particular moment in time. Obviously I'm still receiving Herceptin and taking daily Tamoxifen, I haven't had a whole body CT scan for about 8 month's now and feel I've gradually slipped into my new life post Cancer. However, I'm not the same person I was before and have changed almost everything about myself and my life. I continue to eat healthy and avoid red meat (I only eat free range chicken once a month) other than that I eat fish, eggs and pro-biotic organic yoghurt. I try to juice at least 3 times a week (I was doing this daily for just over 2 years) I've cut it down as I've started to feel better and believe juicing 3 times a week is sufficient in keeping my body both alkaline and healthy.  I continue to go for healing at least once a week this is very necessary and life re-affirming, I can't live without it. I try to meditate daily or at the very least weekly and I attend a weekly meditation group where we concentrate on healing. Yoga has become a weekly practice which also helps with the meditation. Another massive plus is I've started painting again and I feel ok about it. I'm in the middle of painting a couple of new collections and finished off old paintings this has proved to be quite cathartic and has brought me a new lease of life.

Occasionally I slip into my old mind set but I do recognise that this is not healthy and more importantly I am aware of it and try to nip it in the bud before it takes hold of me. Negative thought patterns are not tolerated anymore. This is easier said than done of course as the mind is a powerful manipulator, it also doesn't help when other people pass away or deteriorate with this disease, I can't help getting upset when someone passes even though I know they are going 'home' back to their natural spiritual state. I try to remind myself that this reaction to someones passing is natural and needs to be embraced worked through and ultimately let go of.

In answer to the title of this post my head is in a good place at the moment, I am positive and I've started to plan for the future something I never thought I'd be able to do especially on the work front. I've decided that I want to become a further education teacher possibly teaching foundation in art at a college as well as finishing my current paintings is my goal at the moment, myself and my partner have other plans but I'm going to try and stay focused on my current projects.

Causes of Cancer environmental or emotional..........

The blog Spiritual-light-on-Cancer asks the question Causes of Cancer: Environmental or Emotional? Fiona asks questions through a spiritual medium and receives answers from her Guides, this particular post looks at the causes of cancer asking is it environmental or emotional? this is an excellent question and totally unique response.

FIONA: I am thinking about the causes of cancer. Some say it is caused by toxic emotions; others that it is caused by environment toxins. Can you shed any light on this? GUIDES: Yes. We take you back to what we initially said on this subject. Cancer is one of the ways the body will choose as a means to exit life. When you are looking to exit life the body will begin to accumulate matter in the body as the system becomes sluggish towards life in general. Think about it. You move less when you are unhappy and your thoughts become far more polluted in their nature. The mechanisms for exit can be physical in nature. But by the time they become physical in nature, such as the body has manifested a mass or masses, which can be diagnosed as cancer, there has been a great build up to this point. Although it seems to those of you diagnosed it has been overnight, there has been a build up towards this. Now all of you are right in thinking that it is a genetic issue, and that it is a mental issue, and that it is a toxic issue. The mechanism that causes the manifestation of disease in the individual is individual. But what must be noticed is the commonality with all of you that end up with a diagnosis of cancer, is that there has been an activation of the desire to exit life. For most of you this will have been on an unconscious, subconscious level. You will probably not have realised you are doing this so you must look to reclaim your joire de vivre. This is the most important message we can ever give you . You understand this, Fiona. This becomes difficult for you when you see it manifesting in other ways in other people. You have been to the point where you are considering your own mortality and you know how it feels. You know how it feels to try and get a sense of self and a sense of living back. It is hard. It is much easier to become more full of life without a diagnosis of cancer than it is with one. However, should you wish to remain healthy and you have the strength to do so, engage with life. How do you do this? This is individual to each of you. It will be important that all of you think about what you need to do for your healing. If your body has a level of toxicity or pollutants in it, then cleanse it. But do this lovingly- not aggressively- for cleansing the body aggressively simply adds more of the wrong input into the system. What do we mean? It is simply another thing about how bad my life is. We would rather you ate a chocolate bar at this point, if that is what would make you happier. All of you who are willing to do so, please take a look at the contents of your thoughts. You are not taught to think about your thoughts. You are not taught that you are a creator of your thoughts. Instead you are left with a mind that talks and many of you for want of a better word or phrase aren’t aware of the direction you are driving yourself. So when you come to a stop such as a diagnosis of cancer, and you do not wish for your life to end, it is time to turn around.
Taken from the excellent blog http://spiritual-light-on-cancer.blogspot.co.uk/2013/06/causes-of-cancer-enviromental-or.html

My cancer buddie....

I am so so sad, at 1.30 today my dear friend and fellow cancer patient Sarah passed away I've just found out and feel devastated. I had never met her but we had a lot in common. When I was first dx she came to my aid and offered a virtual shoulder to cry on when I was going through the worst of it, she inspired me as another creative (she was an art teacher) I could relate to her on many levels. Every time I pick up my paint brush, or attempt to knit I shall remember my dear dear friend. RIP Sarah G. (aka cromercrab on BCC forum) we shall all miss you I thank the lord she's no longer suffering and pray her transition into the next life was peaceful and calm.  When anyone dies from the SBC group I find it so hard to carry on it takes all my strength to pick myself up and carry on fighting such a blow really does take your breath away. So many have now passed away since I was dx, this is just terrible news. God rest you Sarah G. you were an amazing woman and you shall be missed love to all 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

The Dr of Hope...

Here's a link to a uplifting story about a Dr who treats his patients above and beyond the call of duty.
 http://www.dailymail.co.uk/femail/article-2296652/Cancer-survivor-nominates-warrior-like-doctor-Daily-Mail-Health-Hero--yours.html
We all need a Dr like this. xx

The importance of being honest......

We have all heard of phrases like 'keeping it real, living in the here and now, being truthful with yourself' today I have been reminded that to be honest with oneself is the only way to be, some get by with living in denial, shoving it under the carpet and just plain pretending, me I live with it up close and personal somedays its sitting somewhere on my shoulders other days its in my face. We all have to come to terms with whatever it is that is challenging us whether that's our health our finances or family life we all live our lives as best we can taking each day one at a time.

Two things have prompted this post one is the passing of an old school friend who at the age of 44 passed away in her sleep on Friday night, she had a heart condition (same as her mother) she'd been out with her sisters and daughter that night and had a great time, went to bed and didn't wake up, shocking isn't it! I am glad she was spared the suffering and pain albeit she was taken way too young. The second by a fellow cancer patient who was worried about sharing the latest news of her disease progression and her decision to have chemo, as she is a self confessed juice junkie and advocate of alternative treatments she had up until now been successfully treating herself with a raw/juice diet and was worried about telling all her followers/readers of her decision

My advice to everyone reading this blog and anyone affected by the issues it raises, be kind to yourself and those around you no one knows when our time is up our bodies are just vehicles for the soul, all of us pass at some point and remember its not about the dying its about what we do whilst we are alive.  Live for the moment.

Wishing you all a very merry xmas and a much much happier new year.
Love and light to all
xxxxxxxxx

An early Xmas Present.....

Hi everyone,
Last friday I went to the hospital for an appointment with my oncologist to receive the results of my bone scan and CT scan, the news is the bone scan came out clear and the CT is the same as the last one in other words I'm stable, this is fantastic news and I'm taking this as an cosmic early xmas present. Still doing herceptin once every 3 weeks by IV and taking Tamoxifen daily although I asked for a blood test to determine if I was still menopausal or too see what hormones I am still producing including estrogen, my onc seemed to think I was still producing estrogen which if I am would mean I should continue to take the dammed Tamoxifen if I am not then they can put me on a drug called Arimidex click on this link if you want to find out more about it http://www.macmillan.org.uk/Cancerinformation/Cancertreatment/Treatmenttypes/Hormonaltherapies/Individualhormonaltherapies/Anastrozole.aspx it's supposed to be only for post menopausal women and like all these drugs comes with its own concoction of side effects BUT it appears that Arimidex does not cause weight gain which Tamoxifen unfortunately does and I had this fact confirmed by my onc who told me that the Tami definately does cause weight gain, uh yeah too flippin right try 2 bloody stone in weight first time ever in my life I've put on this much weight and I don't feel good on it, I've had a couple of falls and really bruised myself mainly due to taking clonidine which is now stopped but also I believe to rapid weight gain and not being used to the new me. I am wishing that I am post menopausal so that they can take me off the Tami and put me on the Arimidex. I did feel kind of uncomfortable chatting to my oncs registrar about this as she looks about a size 18 and didn't feel like discussing weighty issues with someone who obviously has had too live with weight problems. The upshot is that I have had a blood test and am now waiting for the results so will keep you all posted.
Love and light to all xxxxxx