The cost of cancer....

Its taken me a long time to write this post mainly because of the stigma attached to claiming any sort of benefit especially if your disability is invisible ie: your not in a wheel chair. Living with any type of cancer is expensive, it costs just to keep you alive as the pharmacy companies that develop life saving drugs charge a kings ransom and in fact some members of the general public believe it is costing them (in there taxes and NI contribution) a small fortune to keep "cancer patients alive" and that its "not cost effective" quoted by someone who shall remain nameless but I can assure you has pointed this out to me on several occasions, exclaiming that "if I got cancer I wouldn't do chemo or any of the drugs" uh like you know what its like to live with cancer!!! Anyway I deviate so cancer costs everyone a lot of money, from the NHS, the general public and also us cancer patients.

Living with cancer is so expensive, back in 2011 when I was dx I didn't imagine in my wildest dreams that a) I would still be here and b) that it would make life so dam difficult if I did survive.
Initially when I was dx my partner had too work extra hard to make ends meet, he was also taking me to hospital, caring for me at home, doing all the domestics as well as watching the person he loved falling apart. He is my ROCK and has continued to be throughout this whole nightmare. At the time I was dx I had been made redundant and was not working anyway (although I do think this may of caused undue stress and perhaps contributed to my getting cancer in the first place) after a year I applied for DLA and after a small fight received it this carried on until earlier this year when the government replaced the benefit for PIP (which is just another way for the the politicians to claw back money, make themselves look smart for saving money whilst paying themselves extortionate amount of money and lining there own pockets). The outrage this new benefit has caused targeting the disabled is criminal. My illness is invisible, I am not in a wheel chair however that doesn't mean to say that living with an incurable disease doesn't have its disabilities. Chemo changed me forever, it put me into early, chemical menopause leaving me with a multitude of severe side effects ranging from hot flushes (not as innocent as it sounds), massive weight gain (5 stone for the first time ever in my life and its not budging no matter what I do) huge mood swings, depression. Then onto drug side effects Herceptin isn't supposed to have side effects but I am here to tell you for me personally it does, ranging from bad feet (toenails falling off, terrible dry skin and itching) to migraines which can and do occur regularly ie: 4 a week! The only way to get rid of the migraines is to take Sumatriptan which in tern has its own side effects, worryingly it affects my bone density and has contributed to the latest worry and hospital stay (see last post), taking anti-hormonal medication to stop my cancer from feeding on oestrogen also cause a plethora of side effects, mainly joint pain (also can cause osteoporosis) affecting bone density, leaving me like an old lady and some days barely able to walk. So there you have it all of which affect my day to day living. This sounds like I am having a moan but I'm simply illustrating how debilitating living with this disease is. It goes without saying I am eternally grateful to still be here but it's at a cost. I also take supplements and since my DLA has stopped can no longer afford to take them, so I am now in the horrible position of freaking out about not taking supplements that might of contributed to my stable status. As always I worry is it going to come back or spread further now that I am not taking these supplements. My partner is a builder and doesn't earn that much money, I earn no money and now I'm in the worst position possible. We rent our home and just about cover the bills, cutting down on food and not putting the heating on, or using water, watching every penny, It wasn't like we were flush with money before when I was on benefit, the benefit covered my supplement cost and alternative therapies and gave me an independent quality of life. Now I am totally supported by my partner, if he leaves me where will I be (not that he would but what if) life is hard enough without all this added worry and I feel utterly depressed about the whole situation, I've actually been wondering what is the point in fighting/surviving cancer its making me that upset and ill.

Leading me back to the main reason for this post. Earlier this year whilst I was in the middle of moving house the DLA wrote to me inviting me to apply for PIP I was so busy moving house and dealing with my dad who has had yet another stroke and was in hospital, I couldn't deal with it and left it, they stopped my money very very quickly in January even though I was awarded it up until March this year. Since then I have had no money of my own and at this point would like to add that I worked and paid into the system all of my life up until I got made redundant. I've applied for jobs but I don't even get an interview, as most of my new life is made up of hospital and Dr's appointments or dealing with the after effects of drugs and cancer getting a full time job is impossible and any job that I would get would have to put up with me being off ill regularly, given the choice between ill person and well person if I was an employer I know which one I would choose. So back to what am I going to do? Honestly I don't know what to do! I suppose the DLA thought I'd be dead by now must be a massive inconvenience for them to find that I am still alive.

Anyone got any ideas how I'm going to cope? or any suggestions? or information on benefits I can claim other than dole money. I can't claim dole as I can't be available for work all the time as my illness makes it impossible to get a job. This is my current status and I reiterate the title of this post Cancer costs money.......

Here we go again hot hot hot.......

Yep you guessed it they are back with revenge hot flushes sort of disappeared for a couple of months and then wham all of a sudden they return with full force in fact they are worse than ever! Before I'd get hot sweat a bit and then it would stop these buggers apparently triggered by the Zoladex (and exasperated by the summer) are the mother of all hot flushes I've experienced whole days of feeling like my entire body is constantly on a hot flush I kid you not this is utter hell!!! So today when the up beat nurse enquired if all was ok on Zoladex I replied no actually I am living in a perpetual burning hell to which she looked at me with that oh I'm so sorry look and promptly went off to discuss with my consultant. (I don't usually moan to them in the hospital about things but I  am glad I didn't do the usual and say" yeah every things fine" NOT!!!  When she returned from the chat with my Onc. it was suggested I go on Megace progesterone tablet apparently this will stop the hot flushes in there tracks BUT as always there are side effects including my pet hate of more fucking weight gain urghhhhh........ and bloody migraines........wonderful so I wont feel like my whole body is on fire anymore but the downside is I wont be able to function ie: move about because of the incredible weight gain and I probably wont be able to get out of bed anyway because of the bloody migraine. Not sure what to do maybe I should try the Megace and monitor whether the weight is piling on if so stop taking it oh what a conundrum and one I'd rather not have to make, who'd of thought I'd be pondering this shit eh!!! 

Here's what it says on the Macmillan site about the drug:

Megestrol can also be used to improve symptoms such as hot flushes or loss of appetite. Hormones are substances produced naturally in the body. They act as chemical messengers and help control the activity of cells and organs. Hormonal therapies interfere with the way hormones are made or how they work in the body.

Many cancers rely on hormones to grow. Megestrol is a drug that is similar to the female sex hormone progesterone. It may work by interfering with the hormone balance in the body, which may stop the cancer growing. It may also act directly on cancer cells so that they can’t grow.

Your doctor will discuss the length of treatment that they feel is appropriate for your situation. Treatment may continue for as long as it is effective in controlling your cancer.

and the possible side effects drawing attention to the text highlighted in Red:

We explain the most common side effects of megestrol here. But we don’t include all the rare ones that are unlikely to affect you. You may get some of the side effects we mention, but you are very unlikely to get all of them. If you are having other drugs as well, you may have some side effects that we don’t list here.

Always tell your cancer doctor or nurse about the side effects you have. They can prescribe drugs to help control some side effects and they can give you advice about managing them.

Increased appetite
The most common side effect is feeling hungrier than usual, which may cause you to gain weight. This effect on your appetite will go away when you stop taking the drug. If you’re worried about gaining weight, talk to your doctor or nurse.

Sometimes megestrol is used to help improve appetite in people who have lost interest in food and are losing weight. 

Swollen hands, feet and ankles
Your hands, feet and ankles may swell because of fluid building up in them. This is not harmful, but can be uncomfortable. Tell your doctor or nurse if you notice any swelling. The swelling will get better after your treatment ends.

Tiredness
You may feel tired and lack energy while taking megestrol. Pace yourself if you feel tired. Try to balance rest periods with some physical activity.
Feeling sick and indigestion

Some people feel sick, especially during the first few weeks of taking megestrol. Tell your doctor if you are affected. They can prescribe treatment to help.

Mood changes
Megestrol may cause changes to your mood. You may feel anxious or restless. You may also have mood swings or problems sleeping. Tell your doctor or nurse if you have any of these side effects. They can make changes to your treatment if the side effects become a problem.
Skin rashes

Some people experience skin rashes. Tell your doctor if this occurs.

Vaginal bleeding in women
Occasionally, women may have light vaginal bleeding (spotting). Let your doctor know if this happens. When you stop taking the drug you may have some bleeding from the vagina, similar to a period.

Don't want to put on anymore weight but equally don't want to end up a puddle of water so what to do, maybe not take it, more weight gain would finish me off. urghhhhh its not easy living with this shit.

New Year, New Views, New Me........ well kind of

We are now in 2015 WOW didn't think I'd make this landmark its nearly 4 years since being dx with this shit and I am still thriving still living still here, amazing!!!!

So far the year started off with a very bad flu bug that needed anti-biotics to shift it and I've only just managed to get rid of it albeit I am left with an annoying cough. Life is back to some sort of normality although..... I am now getting nervous about the usual scans, results and cancer shit that just keeps going on and on...... urghhhhhhh

Feeling ok other than the flu bug and the cough, had a marvellous xmas with family really enjoyed it this year again I had a slight wobble on xmas day wondering will I still be here next year but thats what life is like when you live on a knifes edge this cancer thing is a constant monkey on your shoulder.

Life is returning to some kind of normality after the events of late last year what with the deaths and the scan worries. I've started to look forward to painting and exhibiting (big show on this year in May very excited).

Going to see GP at the end of this month to address all the horrible side effects that plague me which are:

1. Migraines
2. Joint pain
3. Sickness
4. Acid Reflux
5. Cough
6. High Blood Pressure (a recent development)
7. Abdominal swelling
8. Inward chills
9. Pain in affected shoulder and arm
10. Really bad foot skin peels off and nails drop off
11. Possible prolapsed womb (another recent development probably due to menopause and coughing)

So just a few pointers then lol. Thought I'd better go and address these problems so booked a double appointment, wish me luck. xxx

Arimidex or NOT...... that is the question

So as many of you will know I have been kind of given the all clear see few posts below. All the scans are clear and there is currently no cancer anywhere whoopie! However, in place of the dammed Tamoxifen which I stopped taking on the 21st July I have been prescribed Arimidex because apparently I am now through the menopause. Last week I decided to have a look into the side effects of this particular hormonal drug and found to my horror even worse side effects than the Tami! My main ache on Tami was the weight gain and the migraines, on this new tablet the side effects are and I quote from real life stories cataracts and blindness!, more fucking weight gain, joint pain, migraines etc etc etc oh with the added high possibility that I will develop arthritis in my thumbs (already have problems with the thumbs) which would need operations!! WOW and they didn't tell me of any of these side effects when they prescribed it to me if they had of done I would of said a flat out NO THANKS. Feeling a bit livid with the docs and hospital for not telling me of this and have weighed it all up...... so if I take it I might prolong my life by a bit longer but I might go blind and have problems with my hands so wouldn't be able to paint and create its a no brainer really isn't it of course I'm not gonna take the shit, I'd rather not be here if I couldn't see the world to create my art. I have an appointment in October to see how I'm going on the Arimidex..... yeah right.....!!!!! not sure what I will tell them at the moment and quite honestly don't want to take anything else. Will continue on the Herceptin because in comparison the side effects are minimal and don't affect me that badly. I would be interested to hear from any of you reading about this drug Arimidex or by brand name Anastrozole and your experiences on this and if you find or recomend any of the other hormonal drugs to be better or with less horrible side effects. Please post a comment below and I will return the message. In place of prescribed drugs I sent off and received my first supply of 120 caps of DIM which I am going to take as a natural alternative to the hormonal's for further information see my report on it in the post titled "DIM definitely not stupid......"Many thanks for listening.

Signs and the Peony flower

Its been a week since I learned the fantastic news about being NED (see post below) and its finally sunk in I feel like I'm in a weird kind of limbo land getting rid or the lung mets has been my driving force for nearly 3 years and its not like I'm stopping any treatment any time soon still on Herceptin forever and Tamoxifen for at least 5 years (2 and half years so far) so you see whilst the mets have gone I'm still living with the effects of cancer and its drugs so its not like I can be totally free of it and of course there's that Liver thing, still no word from the Onc on that one but will keep you updated as soon as I hear from them.

Its been beautiful weather this week all the flowers are out which is very unusual for this time of year normally we only see the delicate and beautiful Snowdrop this year the woods are carpeted in them its like the Snowdrop's are in direct competition with the Bluebells that normally cover the woodland floor. As well as the Snowdrop's we have loads of Daff's, Primroses, Crocus's and Violets I love seeing the flowers but worry that its all too soon and its still warm the amount of ground frost we've had this year you can count on one hand.

Getting back to my constant battle with the drugs. Before I was dx I never took any form of tablet so since all this has happened I feel like I'm a right pill popper lol. Its Tamoxifen again and the terrible hot flushes I say the hot flushes but its all of the side effects from this dam drug that really pull me down. I was considering taking a drug break from it or even stopping taking it altogether, until I learned the news of being NED this has now changed everything, I can't stop taking the drug it could be the one thing or the combo of Herceptin and Tamoxifen that is keeping me cancer free so as much as I hate it and all thats its doing to my poor body I've got to try and cultivate a better attitude to it.

I'm trying to address all the side effects and deal with them all so that I can get on with taking it for the remaining 2 and a half years. To start with I'm dealing with the weight gain going from a size 8-18 in the space of 2 and a half years is no joke. I was shopping in a charity shop the other day and a lady working in there decided to take it upon herself to show me where the size 18+ clothes rail was needless to say this upset me for the rest of the day. So no more carbs that includes white potatoes, any kind of rice, or pasta and bread its all going out. Initially I was good with the carbs but its slowly crept back into the diet so a total veto of all these things should help the weight loss. I'm also walking for at least an hour and a half each day and feel better for it. I stopped going to Yoga because I was puffing and panting and could not get up off the floor very easily and others members tended to stare at me like I'd arrived from another planet (little do they know I have its called planet c), now that I've started walking again I am going to try and aim for going back to Yoga and might practice it alone at home for a while.

The next side effect that needs desperate attention is the hot flushes these are extreme although for some ladies its not that bad. Mine are horrific, I instantly feel very nauseous then I visibly sweat and go beetroot in the face it wakes me up in the middle of night and generally makes me feel ill. Its got to stop. I thought it would get better as time wore on but its got worse. To date I've tried wearing a Ladycare Magnet which worked for around 6 months but then stopped working, also stopped drinking tea and coffee (only use decaf) this works but if on the odd occasion I do have a proper cup of tea or coffee the hot flushes are 100% worse almost immediately! Supplements I've taken include Sage, Vitamin E, Evening Primrose Oil all of them dont work for me. Onc. told me not to take Black Cohosh or Red Clover as these interfere with the effectiveness of the Tamxoifen. In the beginning I was offered anti-depressants but found after only taking one that I was a suicidal mess and stopped straight away also was offered Megace but a side effect is weight gain to which I popped the box directly in the bin. I was taking the drug Clonidine for my hot flushes and again this worked but had the added undesirable side effect of making me collapse I had so many falls I stopped taking it. Onc. told me he had run out of drugs for me to try to stop the hot flushes so I've given up asking him.

In view of all I've said in the previous chapter I have now finally found something that could work. Its not available in any shop except on line due to the law changing on herbs and herbal medicine my local health food shop cant sell it but I have managed to get some online and await its delivery with anticipation. Its Peony Tincture apparently according to my very knowledgeable health food shop owner its very effective for ladies where Sage has failed. Unlike Sage it works on the body's thermostat rather than hormonally which is a huge added plus. I also wanted to add that weirdly enough the day before I found out about Peony Tincture I was out looking for this plant and didn't really know why I came home with a bunch of Red Peony flowers and put them in a vase I've since learned that the Peony they use is Red so something prompted me to go out and buy these flowers and I believe this is a sign from spirit guiding to something that will help me. We need to listen to our instincts and act upon them especially if they keep coming into our focus. I cant wait for my tincture to arrive it cost £15 delivered which isn't too bad but I'm going to look into this further, if it works then I'm going to attempt to make my own, will keep you all posted on this one.

Love and light to you all xxxxx

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......

Breakdown in the mall.....

Decided to go shopping today prior to going I did have a headache coming on and I'm not sure whether or not that had some bearing on my mini breakdown in the shopping mall. I think I'm never gonna go shopping especially for clothes again. I am now a size 16 everything else was way too tight, can't quite believe I'm actually a size 16 I've spent the past 30 years being a size 8-10, I look in the mirror in  the changing room and I don't recognise myself let alone anybody else and that includes my best friend who completely blanked me in the street because she didn't recognise me, it is that bad, not only am I the size of a house I am also sweating profusely whilst puffing and panting like an old lady, its just so so sad, and its now getting too me so much so I broke down in the middle of the shopping mall today cried my eyes out, I think its because I don't really see that many people we live in such an isolated rural location that when I do go out I notice other women and can't help but mourn the loss of my old slim self, its not good on any level, even my rings don't fit me anymore I've got a couple of silver rings that go back too when I was 21 that fitted me up until this fucking shit happened to me and it is the fucking drugs making me put on this weight so utterly annoying and so hard I'm trying to be up beat and positive trying to eat right and exercise yet I'm still piling the weight on, I'm at the end of my tether and feel the only thing I can do is stop taking the tamoxifen, I realise this might seem a bit extreme to whom ever is reading it and it may come across a tad un-grateful BUT please believe me when I say I've thought about this long and hard the figures for my oestrogen were 4/8 so my cancer is only weakly feeding on oestrogen. The timeline for my treatment goes like this, I didn't start taking the tamoxifen until after my surgery up until that point I was on chemo which stopped in July 2011 and herceptin on its own ever since, then I had surgery in the September and started taking the tamoxifen in the October I feel this kind of proves that the tamoxifen is the culprit to the weight gain and the terrible joint pain as I only started suffering from these symptoms since starting the the drug up until that point I was fine well as fine as anyone doing tax chemo can be.  I believe my miracle drug is herceptin and have done all along. The other major side effect is the joint pain is unbearable at times I hobble so bad I can hardly walk, my thumbs ache all the time and are getting worse to the point where I feel I can't write or type (if I was working I'd be sacked by now). The downside to all the gorgeous hot weather is that I am now on at least 40 major hot flushes a day I sweat constantly and the only respite I get from them is if I stick my head in the freezer or plonk myself in front of the oscillating fan (which by the way is a god send and I highly recommend it if your suffering) (I have too have it on all night otherwise I don't sleep) they really are quite wicked!

So you see I've got to do something about this and the only thing I can do is stop taking tamoxifen, I have an oncology appointment on monday and will try to discuss this with them but I know they will tell me not to stop taking it that I must take it, its a really hard decision to take but surely quality of life is important as much as saving your life, I mean whats the point in taking a drug thats saving your life but making you as miserable as hell and quite frankly suicidal which is where I'm at at the moment, its not very life affirming thinking terrible thoughts like I want out, or stop the world I wanna get off and its all because of the side effect from taking this dam drug. Will keep you all informed of my dilemma and my ultimate decision.