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.......

Hospital keeping me on tender hooks AGAIN.....

So you might gather that from the title of this post its not gonna be a good post. Well back in early Oct I had a CT scan the usual 3 monthly one and was told to ring for a results appointment I did phone and had an appointment a week or so ago still no results but Onc assured me that all was going to be ok and that she would phone or write with the results as she didn't anticipate it being anything bad. Fast forward onto today and I have a letter asking me to book yet another CT scan and a blood test at my local GP's so on the face of it doesn't inspire me at all in fact I feel like total shit why can't they just tell me what the fuck is wrong!!!! I mean it is my body right! All this is it bad or isn't it bad shit just tears me apart its so stressful if I didn't have anything wrong before I'm gonna get ill just from the anxiety of it all. Bloody fucking shitty hospital will keep you posted and update this later as I've spoken with Onc's secretary and told her I need some answers by the end of today otherwise I shall just keep ringing and ringing and tomorrow I shall go up there until I know what the fuck is going on.

Arty trip to London......

Just got back from a 2 day trip up to the big smoke and for once it was a real pleasure, we drove right up to the front of the RA (Royal Academy) found a car parking space!!!! and I was able to casually walk my painting in to the processing room for submission all over within the space of 10 mins brilliant. Afterwards we had an appointment at Christies Auction house (my friend who came up to London with us has a painting that turns out to be an original Edward Lear and is worth a fortune! crickey!!) he's left the painting with Christies for conservation purposes and looks like its going to auction in June, it was so fascinating and we also had a good look round their galleries taking in Andy Warhols, Turners etc like ya do!!! lol. All in all a thoroughly great day out in London one of the best ever and very arty too.
Back to reality now with a bump, tomorrow I have an appointment at the hospital with the results of my blood test (to see whether or not I'm through the menopause) and my MRI too check I have nothing sinister going on in my head because of all the migraines, so gulp!! here goes back to biting my nails and horrendous intense worry, its all part of the cancer territory I suppose, I pray too god that its all ok.

Heart scan and coffee....

Yesterday I went for my 3 monthly heart scan with the cardiologist, to check that my heart is up to the Herceptin, it can unfortunately affect your heart muscle and if your numbers (don't ask me what or how they do this) are below 50bpm (beats per minute I presume!!) then they will stop the herceptin. This was quite a shock and sent me on a massive worry trip, the research I did informed me (from a couple of lady's on the forum) that before the scan if you drink a cup of coffee (no decaf) this will increase your heart beat, so yesterday I did (feel a bit naughty) but it worked I think my numbers have been going steadily down 1st one was 76bpm 2nd one was 72bpm 3rd one was 67bpm and the latest one was 64bpm all of these numbers are acceptable and the cardiologist told me everything looked fine, just don't want to chance them stopping this drug it could be saving my life. Left the hospital as high as a kite because I've given up caffeine no tea or coffee unless its decaf, so the strong real coffee nearly blew my head off lol. Feeling fine and looking forward to a fun filled week of hospital appointments and treatments! I am actually looking forward to the acupuncture session because believe it or not I think I've cracked the constipation problem and I believe its the acupuncture, so one down two more to go, here's hoping she can sort out the migraines and the hot flushes, you can only live in hope.

Also started doing the yoga exercises on the wii and its actually ok, was a bit worn out afterwards but feel its the way too go, also want to try Tai Chi and Qigong as I've heard this is good for breast cancer here's a link to a youtube vid on the subject http://www.youtube.com/watch?v=sk98bYswqhI&list=PL530E7008CDB43EBB&feature=plcp there are a few more in the series all worth a watch if your interested.


Stay healthy and happy love sarahx

Lymphedema? and the great flood......

Wow another one of those days!! Got bitten on my leg by a horseflie thought to myself I'll go to dr on Monday, then whilst enjoying a brief respite from the pouring rain (I live next village from Yealmpton on national news as it flooded) another of the nasty buggers bitten me this time on my right arm by wrist I've had all the lymph nodes out in that arm and distinctly remember my BCN (breast cancer nurse) saying "not to cause any trauma on that side or it could turn into Lymphedema (see below description) " so was worried sick I ended up phoning the NHS help line and they put me onto a very nice Dr who phoned me back and wrote out a prescription for antihistamines and antibiotics, so now drugged up to the eyeballs on the stuff, it never rains and then it pours excuse the pun!!!!

If any readers have had their lymph nodes out and don't understand the implications of this here's a description of what Lymphedema is. One of the most common causes of lymphedema is removal of the breast (mastectomy) and underarm lymph tissue for breast cancer. This causes lymphedema of the arm in 10 - 15% of patients, because the lymphatic drainage of the arm passes through the armpit (axilla). The main symptom is persistent swelling of the affected limb also note there is no tablet or drug to take that will relieve this symptom and once you have developed it, it can be very hard to reverse the process, the only thing you can do is wear a compression sleeve and of course exercise can manually move the fluid along so it always helps to do the exercises the BCN gave you whilst in recovery from the mastectomy.

On a lighter not I've been busy baking my first loaf of bread today in borrowed breadmaking machine, tasted delicious and I love the fact I know what's in it also baked a sticky toffee pudding smells yummy, sending you all my love and a cyber slice of the sticky toffee xxxxx

Refreshed but still worried

Been away visiting for a week up in Weston-super-Mare, saw all my old friends and stayed with my parents, feel quite refreshed now even though I was very naughty eating chocolates and drinking lots of tea and coffee all the things I'm supposed to of given up, now I'm back home and drinking the green juice, don't get me wrong its powerful stuff and I think really works, but it was so nice to feel normal going out and having lunches just being normal. Its certainly works wonders a trip away, unfortunately the trip was saddened by the sudden passing of my best friends dad, we'd travelled up together and now she's stuck there looking after her mother who has motor neurons disease, I asked her what I could do for her but really there is nothing I can do other than just be here for emotional support, due to this unforeseen circumstance I shall probably be going up to Weston more frequently.

Slightly worried cause I got a persistant itch on my mx site :0( the nurses at the hospital said they thought it was probably to do with the rads but I'm not so sure and really really need to have a ct scan last one was in Oct last year since then I've done 3 weeks of rads and been on tamoxifen and herceptin all of these could of had some impact on the stuff on my lungs. I have been to my GP and asked him to write to my Onc. about a ct scan but still no reply, so niggling in the back of my mind is the need for a ct scan and the constant worry this brings. Every ache or even slight pain is a source of worry, living with cancer is so hard not just physically but emotionally. Sorry this post ended up a bit negative but thats how I feel.