Monday, 21 May 2018

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.......

Wednesday, 9 May 2018

Back to Life and the hospital

Last week was horrific!

It started last Tuesday with a visit to my GP for what I thought was a bladder infection, due to my history she couldn't rule out possible cancer spread so suggested I go to A&E and have an MRI scan done that day! Of course this scared the shit out of me but I went along with it. 4 hours waiting in A&E having blood and urine tests and still none the wiser then a chap shows up with a wheel chair and promptly takes me off to a ward where he informs me I am to spend the night! Around 6 in the evening 2 chaps show up and wheel me in my bed off to have the MRI scan, I was in the blasted thing for 40mins with all that noise so came out of it with a massive migraine, I went back to the ward and spent a extremely nervous night there, terrible night not being able to sleep, noisy, people throwing up, people constipated and straining to go next to me, utter nightmare.

At around 2.30 my Oncologist and team came round and we went through everything, apparently the urine test were negative and the MRI didn't show any new lesions phew.......... however, now they want to do a CT scan on my brain, so off I go again in my bed being wheeled by 2 chaps to the CT scanner, scan complete they dragged me back to the ward where I sat nervously waiting for results.

Results through and no I haven't got breast cancer on my brain, the only plus out of all of this is that the scans were done in 24hours and I got the results almost immediately, normally I have to wait 6 weeks for results!

It was still a harrowing experience and one I would not wish on my worst enemy the waiting game, the needles, no veins all the usual fears wrapped into one huge shit sandwich.

Whilst I was cancer free the scans did pick up problems with my back and neck that will need attention and are a result of being on Herceptin and the other drugs affecting my bone density. Back aches, neck spasms are now part of the new norm for me.

Life with cancer is resumed and jolts me back to the reality of what I am living with.

Wish it would just fuck off.

Wednesday, 28 March 2018

The Great British Bake Off (Stand Up 2 Cancer)

Okay, heres the thing what the fuck are they doing promoting cake making in raising funds for cancer research. Apparently obesity causes cancer (or so they say) it begs belief that if they believe the media hype then why oh why would you make cakes to help fight it. Its ridiculous, don't get me wrong the celebrities that are doing this are trying to help and I applaud them in doing so, but there has to be a better way than baking flipping cakes!

Personally I do not believe obesity causes cancer, I was a slim size 8 had been my whole life when I was dx its only since I got dx that I put on weight and ironically put on most of the weight whilst living a super healthy lifestyle, no meat or diary just green juicing everyday. Obesity does not cause cancer, we still do not know what causes cancer and until we do we wont find a cure. Making those with cancer feel guilty that they in some way have contributed to them getting cancer is just plain evil.

Thursday, 30 November 2017

CT Scaniety.....

Yep its that time of year not just xmas....but yep you guessed it scan time!
It seems to come round so quickly and its my pet dread, not the actually scan its the hunt a vein game, my veins are shot from all the chemo so each time they need to put a cannula in me its a nightmare. I have to arrive 45mins before my appointment because it can take that long for them to get it in, then sometimes they try so many times they can't try anymore and I have to have the scan without contrast dye, the dye is very important it helps give them the best possible picture of my insides. However, this time although I was in dread, the lovely lady that dealt with me managed to get a little known vein in the crease of my arm which apparently pops up when you slightly bend and twist the arm. Apparently she discovered this vein when she was injecting heroin addicts and ever since has been using it on those of us affected with bad veins including chemo patients. I was eternally grateful to her for finding the vein and causing no pain, but not with being grouped in with the heroin addicts! lol.

Its done.....and over with for the next 6 months, now its playing the other part of the game the waiting bit. Results should be in by my next Onc. appointment which is scheduled for the 8th of December.