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
Showing posts with label onc. Show all posts
Showing posts with label onc. Show all posts
Sunday, 2 March 2014
Saturday, 5 October 2013
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
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
Tuesday, 30 July 2013
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
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
Sunday, 24 February 2013
Migraines doing my head in.......
Yesterday I spent the whole day in bed the cause another migraine, accompanied by the usual vomiting and nausea, didn't eat anything until about 8 at night because of the sickness makes me feel like I don't want to carry on anymore dammed fucking headache it pisses me off so much, the only thing I can do is attempt to remedy it with a cocktail of drugs starting off with Sumatriptan which failed followed by 2 paracetamol and an anti-sickness tablet the sickness tablet worked but the paracetamol was just not strong enough ended up taking 2 codeine which finally hit the spot as well as knocking me out and making me feel totally spaced out and not on this planet. At my last onc appointment it was decided that I would have an MRI scan on my head just to make sure nothing sinister was going on in the upstairs department still haven't had an appointment time for this yet.
Needed a bit of a moan about it as it is getting me down. On the upside I managed to operate normally today and am enjoying a bit of cooking so going to have some lovely healthy root veg and lentil casserole with a piece of salmon and some watercress sauce yum yum xxxxx
Needed a bit of a moan about it as it is getting me down. On the upside I managed to operate normally today and am enjoying a bit of cooking so going to have some lovely healthy root veg and lentil casserole with a piece of salmon and some watercress sauce yum yum xxxxx
Tuesday, 19 February 2013
Oncologist appointments and a Head Scan...
Firstly I would like to get my most recent moan out of the way, last friday I went for my 3 monthly onc appointment, I waited for an unprecedented 3 hours!!!! when I did finally get into see the onc it wasn't my onc. it was another onc. and he hadn't had time to read through my notes so I had too relay my whole sad and sorry tale all over again, annoyed and upset I left not feeling very confident about my team or the hospital.
Some readers will already know about my struggle with the monthly migraines that I used to suffer, I say used to suffer because unfortunately they have now turned into twice weekly occurrences, this is just two to many migraines so at my oncologist appointment informed them of the headaches and now am awaiting an appointment time for a MRI of my head, I am pleased about this mainly because every time I get a headache I tend too think that there is something more sinister going on this only exasperates the headaches even more, I need some closure on the migraine situation and an MRI is probably a good way too go.
After writing all of the above I have now found out why my own oncologist was unable to see he has been fighting his own battle with Liver Cancer for the past 6 months, this was news to me no one at the hospital has told me of this I found out this morning from the nurse that gives me Herceptin at home, too say I was shocked is an understatement I feel for my poor prof and wish him well, this news has decided me, I am definitely going to change hospitals as the oncologist I saw on Friday was in fact his replacement and whilst I appreciate how busy the new prof is and I don't doubt his abilities or his skill I feel that the oncology dept at my hospital is now very over subscribed this is part of the problem so many people needing treatment and appointments and not enough Dr's or staff. So as we are looking to move up to Somerset anyway and have decided to change hospitals and with it the team to the highly recommended Taunton Hospital apparently it has a new specially built cancer unit and I've found out I can still have Herceptin at home.
Some readers will already know about my struggle with the monthly migraines that I used to suffer, I say used to suffer because unfortunately they have now turned into twice weekly occurrences, this is just two to many migraines so at my oncologist appointment informed them of the headaches and now am awaiting an appointment time for a MRI of my head, I am pleased about this mainly because every time I get a headache I tend too think that there is something more sinister going on this only exasperates the headaches even more, I need some closure on the migraine situation and an MRI is probably a good way too go.
After writing all of the above I have now found out why my own oncologist was unable to see he has been fighting his own battle with Liver Cancer for the past 6 months, this was news to me no one at the hospital has told me of this I found out this morning from the nurse that gives me Herceptin at home, too say I was shocked is an understatement I feel for my poor prof and wish him well, this news has decided me, I am definitely going to change hospitals as the oncologist I saw on Friday was in fact his replacement and whilst I appreciate how busy the new prof is and I don't doubt his abilities or his skill I feel that the oncology dept at my hospital is now very over subscribed this is part of the problem so many people needing treatment and appointments and not enough Dr's or staff. So as we are looking to move up to Somerset anyway and have decided to change hospitals and with it the team to the highly recommended Taunton Hospital apparently it has a new specially built cancer unit and I've found out I can still have Herceptin at home.
Monday, 17 December 2012
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
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
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