Apologies in advance to anyone reading this it is a bit of a downer and at xmas so if you don't want your happy bubble to burst I would recommend not reading it, but hey thats life and I feel the need to get this out of my system and share it.
Oh my God is a phrase we all use these day's its used to exclaim your shock at something usually something trivial but today I received an email from Chris Woollams of CancerActive to which I used the phrase OMG and not on something trivial! This simple line was what made me exclaim it "infection as a cause of cancer" the article looks into the possible link between either parasites or infection as a trigger for cancer here's a link to the article http://www.canceractive.com/cancer-active-page-link.aspx?n=1245 the reason why this was an OMG moment, because just prior to my own dx I had a virus a bad virus the doctor was called out and I was given a shot to stop me being sick I was very ill for a couple of months then early in the following year I was dx with breast cancer so you see why this is an OMG moment I believe this is what triggered my cells to mutate and that I was just plain unlucky. When I dwell on this thought I feel intrinsically that this is the cause for me anyway.
Weirdly enough this year I am again plagued by a bad virus started off with all the expected symptoms of a bad cold/flu sore throat, nose blowing, shivering, feeling hot cold and generally out of sorts infact its got so bad I went to the Dr just before xmas and he confirmed that I do indeed have a very bad lung infection to which penicillin has been prescribed, whilst the anti biotics are starting to kick in I still feel really ill and now have the added gastric gut pain. I haven't been able to go away for xmas as planned, I haven't seen any of my family or friends not only because I don't feel well enough to travel but also because I don't want any of them to catch it. So spent yesterday on the sofa just me and the cats, no xmas diner for me just a bowl of soup as have no food in because we didn't plan on being here. Its been another shit xmas, next year I wont get my hopes up like I did this year and should of known that something was going to go wrong although I didn't bank on it being my fucking body again. So there it is everyone a not so merry xmas for me and unfortunately I'm probably not the only one to feel this way on xmas day, thankfully I've woken up to blue skies and some sunshine on Boxing Day.
Monday, 30 December 2013
Monday, 9 December 2013
True hope at christmas....
Hi all,
The post today is about anniversary's or in my case cancerversary here's a link to an article written in the New York Times by someone who also shares a cancerversary and here's how he celebrates it and what it means to him, an excellent piece of writing well worth a read.
http://www.nytimes.com/2013/12/08/fashion/Cancer-Survivors-five-year-Celebration-Day-known-as-cancerversary.html?smid=pl-share
I found this article brought a warm fuzzy feeling the kind that an open fire on a cold winters night can bring in a word comfort, its hard living with an incurable stage IV terminal disease, each year that passes makes you become more and more complacent in your life. The first year I was like a raw nerve on tender hooks every time I was called by the hospital or scanned then as the years progress I'm finding myself falling back into the happy blissful complacent place I was in before all of this shit started. Of course you never really forget its always there everyday I'm reminded in some small way that I have this disease I suppose its part of our innate capacity as human beings for survival that we shove the shit under the carpet and to coin a phrase keep calm and carry on.
True hope is the message carried in the article and whilst no one knows why we got cancer we can be grateful for riding the shit storm and coming out the other side albeit not smelling of roses but still in one piece. We are after all still here, still breathing and living if there's one thing we should all do and that is to live in this perfect moment this second in time, enjoy and love the life your living.
....... Merry Xmas everyone.......
XxXxXxXxXxXxXxXxXxXx
The post today is about anniversary's or in my case cancerversary here's a link to an article written in the New York Times by someone who also shares a cancerversary and here's how he celebrates it and what it means to him, an excellent piece of writing well worth a read.
http://www.nytimes.com/2013/12/08/fashion/Cancer-Survivors-five-year-Celebration-Day-known-as-cancerversary.html?smid=pl-share
I found this article brought a warm fuzzy feeling the kind that an open fire on a cold winters night can bring in a word comfort, its hard living with an incurable stage IV terminal disease, each year that passes makes you become more and more complacent in your life. The first year I was like a raw nerve on tender hooks every time I was called by the hospital or scanned then as the years progress I'm finding myself falling back into the happy blissful complacent place I was in before all of this shit started. Of course you never really forget its always there everyday I'm reminded in some small way that I have this disease I suppose its part of our innate capacity as human beings for survival that we shove the shit under the carpet and to coin a phrase keep calm and carry on.
True hope is the message carried in the article and whilst no one knows why we got cancer we can be grateful for riding the shit storm and coming out the other side albeit not smelling of roses but still in one piece. We are after all still here, still breathing and living if there's one thing we should all do and that is to live in this perfect moment this second in time, enjoy and love the life your living.
....... Merry Xmas everyone.......
XxXxXxXxXxXxXxXxXxXx
Thursday, 21 November 2013
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
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......
Wednesday, 6 November 2013
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.
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.
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