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.

CT Scan Results........not good....

Hello everyone,

As the title of this post would suggest my latest yearly CT scan results are in and not good. The lung mets are still currently the same and classified as in a stable condition BUT 'something' is showing up on my liver at the moment and they (the docs) don't know what it is, so have requested that I have another CT scan asap to take a closer look. Onc. said "we did see it on your last scan" (which was a year ago!!!) and I suppose they were taking a watch and see approach, would of been nice if they'd of told me that was what they were doing!!! Anyway the upshot is we don't know what 'it' is on my liver just that something is showing up on the CT so in the next 2 weeks I should of had a another scan and d-day is the 1st of November.

Urghhhhhhhhh Obviously with a a stage IV dx of breast cancer anyway you always assume the worst, but I am trying to keep myself positive and upbeat, its like someone has tele-ported me back to that first day of being told "you have cancer" such a knock back feel dazed and confused about the whole thing and certainly was not expecting it, especially after all the juicing, supplement taking, and spiritual healing I've been doing, everyone say's I look really healthy, although my answer to that is "I looked really friggin healthy before I got cancer" thats the scary thing about this vile disease. I've decided not to tell my mum and dad yet I think I'll wait until we know what we are dealing with, I don't want to unduly upset them. I've told a couple of friends and treatment practitioners about it and found it helped to share the news and get it off my chest, also some of them needed to know as they don't seem to understand why I might seem distant or withdrawn at times by sharing this with them they get to understand why. Sometimes its harder to hide the truth and I don't need anymore crap at the moment. Feeling like I need to digest what has happened and meditate on healing, so going to spend the rest of the weekend with my brother Andy and partner Lee. Lee was with me at the appointment and as usual was my rock.

During the consultation we also discussed my hormonal status to which I've learned that I'm not through the blasted menopause not by a long shot so it seems I have to continue taking the bloody Tamoxifen, the onc. said with head tilted to one side "why so disappointed at not being through the menopause your so young" yeah true I'm 45 (42 when dx) but whats the point in going back to having periods when your bodies fucked with the drugs, chemo and menopause its not like I'm ever going to be able to have children is it? and as I'm plagued with major side effects from the Tamoxifen and the menopause I'd rather be through with it and move onto another drug that might be a bit more user friendly, honestly these docs say the most stupid things sometimes!

Got the scan in the next 2 weeks and appointment on the 1st so will keep you all posted as too the outcome.
Love and light to all
Sarah xxxx