I've just come off the phone to the hospital as my 3 year 'cancerversary' approaches and I want to check the date of my forthcoming scan. With my daughter's wedding on the horizon I want to be sure it doesn't clash with dates around that time but also, they forgot to book me in last year. Thankfully my GP picked this up when I visited with ongoing back pain issues so my 2 year scan was 3 months late.
Surprise surprise, the administrator I spoke to has absolutely no record of any forthcoming appointments for me. I shouldn't actually be surprised as this is the hospital that signed me off at only 11 months - 7cm grade 2 kidney tumors obviously not ranking highly enough to warrant the supposed 5 year specialist cancer care.
I recently had to visit the doctors due to increased pain in my back and what I suspected was a nasty UTI which I have also suffered with. The new GP I had to see asked if I may have drunk more coffee than usual or possibly eaten a lot of citrus fruit???? Seriously, not a word about the fact I have one kidney owing to the other one having been fished out with a big tumor inside. I was palmed off with a 'see how you go' attitude - and I am still going, frequently to the loo.
The way my cancer presented itself was at the time, quite dramatic and the subsequent care I received so poor I had to change hospital trust. I really can't face the thought of having to change again, it's ridiculous but I'm completely at a loss as to why being treated at all is so very difficult.
My own GP has been extremely supportive but it's the lack of specialist kidney cancer care that has me totally bewildered and not knowing where to turn.
I have spoken to a Macmillan Nurse recently who was extremely helpful and very kind - I did get a little tearful on the call. She was shocked that I'd not had a specialist cancer nurse at any time during my care but more so that I have no consultant. The nurse took time to research a little and was puzzled as she said ALL cancer patients should have this care for at least 5 years. This had been my understanding but it doesn't make sense as mine ended before 12 months.
Right now I feel I have 101 unanswered questions but no one to direct them to.
Are all cancer patients supposed to get 5 year specialist care?
Does kidney cancer differ significantly from other cancer treatments?
Should/can children of kidney cancer patients be tested?
Does kidney cancer care differ between hospital trusts?
Do other kidney cancer patients suffer with ongoing backpain?
What caused the large hemorrhage in my kidney/tumor?
I could go on...but I don't know where to find the answers I need and if I can't find them is this the same for others going through similar?
I have left the large folder containing my medical notes shoved at the back of my wardrobe as I want to celebrate my daughters wedding before opening that particular can of worms. But, when I do I will be asking these and many more questions. The fact I can't find the answers means there's a lot more work to be done to help highlight the seriousness of kidney cancer and the devastating affect it has on your life.
Day to day I'm not a worrier, I eat clean, keep fit and maintain as healthy a lifestyle that I can. I run, practice yoga and I like my life to be orderly. The latter comes from having had such a sudden and startling presentation of kidney cancer, I still keep an overnight bag packed for emergencies! This is why I wanted to know appointment dates, I like to be in control of my life and not leave anything to chance. Without any specialist care though I feel I'm playing a game of chance like it or not.
From running a fashion business to waking up one day discovering I have kidney cancer. I have recorded my journey from fashion victim to cancer survivor. From a daily journal I made in hospital, through my recovery & on to the road to fitness I have written of how I found out, what I felt, how I was treated - and what I wore.
Friday, 26 February 2016
Monday, 22 February 2016
Oblivion
3 years ago I was totally unaware that a large tumor was growing inside my kidney. I'm reminded of this as I approach the 'anniversary scans' that check that no nasties have taken refuge in any of my other vital organs. Despite existing well on only one kidney I'm not yet ready to let go of anything else and so I await the appointment letter with more than a little trepidation.
However, day to day I push thoughts of the C word as far as possible from my consciousness and prefer to focus on having a fit and healthy lifestyle. For this reason my daily life now compared to 3 years ago is quite different and this in turn has altered my mindset.
I no longer drink - I've tried but I am officially a lightweight compared to back then. The lack of alcoholic courage has meant I don't socialise in the same places (most require dutch courage before entering). My fiddle is hardly played as this pass time mainly took place in pubs and clubs and again, drink 'enhanced' my fiddling experience - as well as my irish dancing.
I closed my former business when I was first diagnosed and although revisited it briefly afterwards, I was no longer excited by the fashion world and found it difficult even to like it anymore.
My appearance also changed dramatically, gone are multicoloured dreadlocks and mohicans and my wardrobe is a lot less bizarre nowadays.
Before my cancer diagnosis I was in a complete state of oblivion. Not only was I blissfully unaware of the sinister goings on in my kidney, I didn't think that my lifestyle was all that bad. It's taken 3 years for me to have a good hard look at my former self and realise I was maybe pushing a few too many boundaries health wise.
I suppose I'll never know whether I drank too much, my sugar intake was too high, added too much salt to meals etc. The point is that I don't repeat the same mistakes, just in case.
I've now returned to a largely vegetarian diet and limit sugar and dairy intake as well as avoiding salt where I can. I drink plenty of water and although I've raised a couple of glasses since, my alcohol intake is negligible.
The reason I run also has a lot to do with my mindset post cancer. One of the fears I've had is of the scans picking up metastasis on my lungs, the sneaky f***ers seem to make a beeline there in many kidney cancer cases. If I can run then I feel I'd know if there were any issues in that department.
The one thing I would love to be able to do is return to that oblivion, but I wouldn't know then what I know now and some valuable lessons have been learned.
So, as I approach that anniversary date I'm making a conscious effort to be aware of the lifestyle changes I can continue to make to lead a healthier life. Leaving nothing to chance.
However, day to day I push thoughts of the C word as far as possible from my consciousness and prefer to focus on having a fit and healthy lifestyle. For this reason my daily life now compared to 3 years ago is quite different and this in turn has altered my mindset.
I no longer drink - I've tried but I am officially a lightweight compared to back then. The lack of alcoholic courage has meant I don't socialise in the same places (most require dutch courage before entering). My fiddle is hardly played as this pass time mainly took place in pubs and clubs and again, drink 'enhanced' my fiddling experience - as well as my irish dancing.
I closed my former business when I was first diagnosed and although revisited it briefly afterwards, I was no longer excited by the fashion world and found it difficult even to like it anymore.
My appearance also changed dramatically, gone are multicoloured dreadlocks and mohicans and my wardrobe is a lot less bizarre nowadays.
Before my cancer diagnosis I was in a complete state of oblivion. Not only was I blissfully unaware of the sinister goings on in my kidney, I didn't think that my lifestyle was all that bad. It's taken 3 years for me to have a good hard look at my former self and realise I was maybe pushing a few too many boundaries health wise.
I suppose I'll never know whether I drank too much, my sugar intake was too high, added too much salt to meals etc. The point is that I don't repeat the same mistakes, just in case.
I've now returned to a largely vegetarian diet and limit sugar and dairy intake as well as avoiding salt where I can. I drink plenty of water and although I've raised a couple of glasses since, my alcohol intake is negligible.
The reason I run also has a lot to do with my mindset post cancer. One of the fears I've had is of the scans picking up metastasis on my lungs, the sneaky f***ers seem to make a beeline there in many kidney cancer cases. If I can run then I feel I'd know if there were any issues in that department.
The one thing I would love to be able to do is return to that oblivion, but I wouldn't know then what I know now and some valuable lessons have been learned.
So, as I approach that anniversary date I'm making a conscious effort to be aware of the lifestyle changes I can continue to make to lead a healthier life. Leaving nothing to chance.
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