Tuesday 13 November 2018

2nd Mastectomy, 2nd time lucky.......RESULT

Those of you who read my post's will already know about my cancelled operation see post NHS no beds...

I finally have another appointment on the 27th of November as a day patient so I will be going home on the same day (apparently this is the new norm with mastectomy operations) got everything crossed to get this operation out of my way this year. New surgeon is fantastic so all is good on that front.

UPDATE

6 days out of surgery YAY it happened this time. Turns out that going home was a good move although I had to go back into hospital on the Friday for a drain check/removal, they were going to replace the bottle however, I told them next week I have a CT Scan, an echo heart scan, Herceptin injection not all on the same day, they decided to take the drain out to save me another visit to the hospital. Thank god for that!!!

Feeling very sore as one would expect and not sure about the wound its a bit gunky but I have Herceptin tomorrow so shall show the nurses see what they think.

Other than that its wonderful to feel flat chested no sinister lumps and bumps no lady humps to worry about. Looking forward to a boob free life. No tears so far I don't miss them or it! Looking forward to a few months down the line when this will be a distant memory.


Monday 22 October 2018

Life on anti-depressants

Anti-depressants have become a part of the my life, I never expected that I would have to take medication for depression although looking back I've always been more depressive than upbeat. After being dx I thought I was doing fine, in fact with lack of oestrogen I wasn't as moody as before, leading me to believe that my mood swings were a result of out of balance hormones. Initially I was put on anti-d's for the menopausal symptoms to alleviate the hot flushes caused by an early chemical menopause (which by the way are still as horrendous as they always were) this worked for a while but eventually they stopped working and I am now back in the hot and sweaty position I was before. Trouble is I can't seem to get off them. I want to come off them as they aren't working for what I they were prescribed for. Of course I realise I probably wouldn't of been able to cope with what life has chucked at me over the past 7 years if it wasn't for the tablets.

The best way of describing being on anti-d's is that :

Normal life is full of a rainbow of colours, dazzling,vibrant, bright and alive, once your on anti-d's this rainbow doesn't stop but its muted, toned down, nothing is as bright as before, everything feels safe, everything feels beige....... 

The thing is life isn't beige, things happen, life throws curve balls in all shapes and forms, sometimes its amazingly wonderful and at other times its hard to fathom how to cope. I feel dumbed down, on the one hand I don't get stressed out about ANYTHING and I mean anything, everyone tells me how well I cope with my dx but really I don't give a shit because I'm living in the safety of a beige world where nothing touches me, apart from my dad having 2 strokes and is now in nursing home that really upset me and I actually found myself crying but not for long as the ant-d's take the edge off of everything.

Im going to try and ween myself off of them in an attempt to feel like me again. I need the colour back in my life, I need to be me again in all my kaleidoscope of colours.

Monday 15 October 2018

Secondary Breast Cancer - After care

Hello to those that follow me or to anyone thats interested. This blog post is on a subject that is extremely important to me and anyone else who is currently dealing with secondary breast cancer dx. Its about after care, so far my team at the hospital have been amazing BUT I still don't have a dedicated Breast Cancer Nurse who specialises in a secondary dx. The general Breast Care Nurse only works on a Wednesday and Friday.

This disease as we all know affects all of us differently with 10 sub-groups and various levels to those groups, I think we would all agree that a new approach is needed if we are to move forward with our lives and living with such a dx. The disease affects everyone so differently and what might work for one doesn't necessarily work for another. Fundamentally we need help, specialised help from a dedicated secondary nurse who is at the other end of the phone (not just on a Wednesday and Friday). At the moment we have the wonderful Breast Cancer Care Charity who have a hot line to ring if you need it and I do ring it, to discuss all sorts of problems from treatments to side effects as well as personal emotional issues, but it would be a lot better if I had someone I had grown to trust and know, who understands me and my dx, who can offer real educated advice on all sorts of matters not just medical but also on an emotional level.

Here's al link to Breast Cancer Cares campaign 'Secondary, not Second Rate' https://www.breastcancercare.org.uk/sites/default/files/secondary-nursing-report.pdf this outlines my feelings on this subject and offers an insight into how we can help others live there lives with care and compassion.

Friday 14 September 2018

No Beds NHS

Wow, didn't expect that. Turned up at my appointment for operation on the 12th I had to get a lift with my other half who couldn't take any time off work so I was at the hospital bright and early, waited 3 hours before my appointment time, at 11 oclock I walked into the ward and they started to do the usual, admin form filing in, gave me surgical tights and got me changed into a gown then out of the blue a lady turned up and asked to speak to me in private where she revealed that my operation had been cancelled that day as there wasn't any beds available. I have heard that this happens but why didn't they contact me the day before???? urgh........... back to the drawing board. I was then stranded at the hospital feeling knackered and starting to develop a migraine, talked my partner into picking me up and taking me home so got home about 3ish......what a long, waste of time day that was.

Tuesday 4 September 2018

2nd Mastectomy

Some people will know that I have always wanted the left hand breast removed. From the very beginning when I was first dx I wanted to have both off but the surgeon wouldn't perform it saying and I quote "I never remove a healthy breast" however I argued that with secondaries as well I wasn't living with a healthy breast but rather a ticking time bomb. Not only was it a cancer bomb waiting to erupt but also it had grown from a size 32 to 42 in a very short time making it stupidly large, also I can't wear a bra as when they took the bad boob they also took a lot of lymph nodes out down the side of my body where your bra strap sits this causes a lot of pain when I wear a bra hence not being able to wear a bra making me feel out of balance, looking out of balance, carrying extra weight on that side and a boob that is feeling the force of gravity altogether a right pain in the tit! Seriously though, I have been suffering with the odd weird pain in that breast and of course worry like mad that its something more sinister.

So finally after a lot of pushing on my part the powers that be have agreed that to remove it wouldn't be such a strange idea and are now offering me surgery dates of the 12th of September, I only got informed of this on Friday 31st August, so got this weekend to discuss and go over everything with my long suffering partner. Who agrees it should go.

Weekend over and decision is made. Pre-op this Thursday and operation next Wednesday.

Feeling a little anxious but I know it makes sense and thank god for the NHS I can have the operation and with any luck will live a little longer.

Wish me luck.

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.