Sunday, 22 November 2015

So, How are you? Now theres a question!

We are now well into November, so its just over a year since I started my third course of chemotherapy.  It also means that its 5 months since I finished said course of chemotherapy, and I finished it o
n a high with No Evidence of Disease in my body (again).  As a recap, that's the best I can ever hope for now, NED, I will never get the All Clear or be told I'm cured.  The reality is, I'm living with cancer and always will be.  But, at least I'm living.
So, I very often hear "wow, you look great", "how are you?", "OMG,look at your hair", "Ooh, im loving the curls" Most of the time I can reply with "oh thanks" (ive never been that good at accepting compliments! or  "yeah, im fine ta!" etc, etc.  Oh, and yep, I love my curls too, im choosing to embrace them this time in the hope that I can avoid a 6 month period of looking like Subo's body double.
But, in the last couple of weeks something has changed and im not sure what.  Maybe I have just worn a brave face for a little too long, seven years of pretending to myself and everyone else that Im fine maybe is taking its toll.  I remember having a conversation with a colleague last time I was diagnosed in 2012, saying  that 95% of the time I sleep exceptionally well, like a log in fact and she explained that people react in different ways to trauma, some stay up all night, worrying and not sleeping, yet others can shut their troubles away in a box and almost just ignore the problem and tuck it so far away, that they can then get a great nights sleep with no worry.  I think that's what Ive done, maybe not so much buried my head over all of this, but put my head in the sand and kept digging.
I read a magazine or newspaper article a number of weeks ago written by a lady who had just finished treatment for breast cancer and she had been diagnosed with PTSD (Post traumatic stress disorder) which I almost scoffed at when I was reading it - how can she compare this to going to war? I was kind of perplexed to say the least.
But as I have been on some sort of emotional rollercoaster from hell over the last few weeks, I have found myself thinking back to this article more and more, Im still not sure that the comparative is quite right, but I do think maybe I need to take stock of what I have been through and try to think less of what may come up In the future. So what has this rollercoaster from hell done to me - again, I don't know exactly, I just dont know how I feel, teary, emotional, maybe even irrational (I know, me, irrational, who would have thought!).   Situations that I wouldn't even have thought about twice before, can bring me to the brink of tears on a daily basis, I get cross with myself at work when im asked a question and I cant give an answer without referring to a notebook, I have folders, files, spreadsheets coming out of my ears because I cant trust my memory and thats without the worry of remembering where ive filed things!  I get upset as I feel most people expect me to be on the ball as I was before chemo, but how are they supposed to understand that they grey matter doesn't work as it once did?
General opinion is that I do too much, went back to work too early and didn't give myself enough recovery time from eight months of tough chemo.  My opinion is that "they" are probably right, but it still makes me reluctant to slow down  -   Im my own worst enemy obviously.  I couldn't do anything for the first seven months of this year so I feel im packing it all into the last 5 months!   When you have been faced with the very real situation that your life could be cut short, not once but three times if kind of makes you feel like you have to make the most out of every day.  Theres a lot of life out there to be had, places to go, people to see, things to experience it and I want to do it all!!!
the good news is, I've read other blogs and a lot of people feel this way.  Having cancer and loosing people along the way does make you look at life differently, it does make you want to live life to the full, but by doing just that, you then realise just how much you don't want to leave it. It makes you realise how precious life is, how we need to live our dreams as much as we can and fit as much into life as we can.  Just maybe not all at once though.  Time is a great healer (apparently) so im banking on that helping me and sorting me out.  This cancer malarkey to be quite frank is a bloody pain in the arse and a major  inconvenience for all involved!
I know I will pick myself up, I have good people around me, maybe I need to be more honest when they ask me how I am, come out from behind the brave face and admit that im not feeling great, I do need a hug and I do need to slow down.   Its hard though, I don't like the thought of people worrying about me.  But still, its very nearly Christmas, time to shut down for a couple of weeks and for the Burton family its time for the holiday of a lifetime ready to pick our selves up, dust ourselves down and be ready for whatever 2016 decides to bring us.

Big love to all those that take time out to love and care for me.
I couldn't do it without you.

Friday, 9 October 2015

its Friday 9th October today, my "Cancerversary".  Its 7 years today since our lives changed forever when i was diagnosed with breast cancer.   I can still remember that meeting as clear as day, as though it was yesterday. I had found the lump myself and gone to see my GP, at that point the rollercoaster ride that we are still on started.  Shaun and i went over to UHCW to meet with my nurse Kristn and the Doc, Stephen Parkes, he very calmly told me that i had DCIS, whitish is almost pre-cancerous, but as the lump was so large it meant that my whole breast would need to be removed, but as i wouldn't require any further treatment i could have an immediate reconstruction, this was all booked in for 4th December. Thats the day they discovered i didn't quite have DCIS, but a grade 3 tuner and also activity in my lymph nodes, meaning chemotherapy and all that jazz.  All of this happens at such a speed that its hard to take on board what is actually going on and what is being said to you.  The doctors use long words, many of which i could not pronounce, let alone spell, and all at a time when you need to be taking on board and understanding what is being said.  I think my head starting spinning on that day 8 years ago and has not quite stopped even now.
When i first me Professor Christopher Poole, my fabulous oncologist, he told me i needed chemotherapy.  he had a very clever little program on his knackered NHS computer that told us, if i didn't have chemo, the cancer was 66% likely to return, but if did have chemo it was only 33% likely to return, so it was a no-brainer, chemo would cut my chances of a recurrence in half.  so i embarked on the first 6 months of gruelling chemo, it was hell as i was also contending with my reconstructed boob leaking  and not being able to heal whist on chemo.oH, it was all the fun of the fair in our house at that time.  the kids were ten and eight, we had a new puppy and Shaun was still trying to juggle everything.
But fast forward 7 years, and I'm still here, I'm alive and well.  I had a CT scan last week and learned on Wednesday that showed that i was still showing NO EVIDENCE OF DISEASE!!  Which is just amazing.  One of the statistics i was old in the early days has always stuck in my mind, and always scared the living crap out of me - when i was first diagnosed with Triple negative breast cancer (the most aggressive for of BC) statistically, only 15% of those with a similar diagnosis lived for a further 5 years.
So, here i am 7 years later feeling quite smug, but also very, very lucky.   It has been tremendously hard for everyone involved around me, for Shaun and the children, i can only begin to imagine how they have been affected by this, but they all seem relatively normal!  Lucy has ventured of to Sheffield, to University, and whilst i miss her company (not her washing) loads, i am bursting with pride.  She has settled in so well, and made some lovely friends so easily and quickly, i have no worries, i know that our girl will succeed in her chosen path and be fab at all she does!  Love you Lucy Loo.  James, well, he is James, adapting well to his only child status - or as he calls himself, The Child who Wont Leave Home, like thats meant to make me feel better!  He has a great group friends and football team mates and he even managed to score a goal last week  (the fastest in the league so far at 28 seconds!)- Go James, I'm so proud of you buddy.  Then theres Shaun, a man of very few words, and to be honest, when he does speak, it very rarely makes sense - but the man is amazing.  He has cooked, cleaned, washed, taxid, everything for all of us all of the times i have been on treatment, he has broken sleep to be able to attend hospital appointments with me and he has never once moaned - well not to me anyway!!!  I also have the most amazing sister, whose support has been second to none throughout this whole journey, cards, flowers, pressies, even hot meals posted to us at all time. just amazing.
I have so many friends and work colleagues (most of whom i class as friends) who have helped me along the way, whether by cooking us a meal, taking me to chemo and entertaining me, taking me for days or nights out, the list has been endless and i will always be eternally grateful to every single oe of them.
It most certainly has not been all doom and gloom though, we've had some right laughs along the way and some personal achievements too.  Between treatments I've completed two London marathons - a childhood dream, but it took getting cancer to give me the drive and determination to get off my arse and do it.  Ive also done the moonwalk - ok i cheated and did it in a wheelchair, but i feel that Coz and Beck got a better workout because of it, so i don't feel guilty!!  As a family, we've had some great holidays and some fun times, I've had weekends away with friend and just laughed so much.  I just now have such an appreciation for life and all that it can bring.
Of course, i realise and remind myself everyday - i am one of the lucky ones.  I think of Julie and Gail everyday in disbelief that they are no longer with us.  But it also makes me realise that life is too short not to make the most of it, we need to be out there every day doing what we love and being with he people we love, because all too quickly it can be gone.
Get out there and live your dreams.


Monday, 3 August 2015

Good times and Sad times.

So here we go, its been a few weeks since I last posted, and its been a massive rollercoaster.  There have been great highs and terrible lows.  I have returned to work (not sure if that's a high or a low!) which is great as it is the biggest indication of me returning to normal and recovering form the effects of the chemo.  Ive only been doing 3 days a week, but its a start.  We have seen our beautiful daughter Lucy grow into a beautiful adult and helped her celebrate her 18th birthday with 4 days of celebration.  It is an honour to call her my daughter - I often look at her in amazement, her confidence, her beauty, her sense of humour, her intelligence all astound me - as do her clumsiness and ability to ask the most daftest of questions!
We also had a most needed 4 day break to Barcelona, temporarily becoming a family of 5 with the addition of "the other Lucy".  We had a fab time, it was so hot, but we enjoyed seeing most of the city from the comfort of the open top buses.  But it was whilst we were here I received the devastating news that G had passed away.  If you remember, I had been introduced to G in the chemo ward back in November.  We had become firm friends, allies almost, in this battle against this bloody cruel disease.   Our relationship quickly grew, from our love of going out to breakfast through to our hatred of cancer and ultimately our fear of death.   We took comfort in each other, knowing that we could talk about anything to each other, especially our fears.  We were both supported by great friends and we both have amazing sisters and I am very fortunate to have Shaun and our children, but no one (quite understandably) wants to talk about death and all that it brings.  I fully understand Shaun turning away from me and telling me to shut up when I talk about my funeral, order of service, songs to be played etc - but someone needs to know.  I cant expect Shaun or any of my friends or my sister to understand the real fear of death, the fear of not seeing the children grow up (hence Lucy having 4 days of 18th celebrations, there have been times I didn't think I would be here to see her reach 18, so I was determined it wouldn't pass quietly!) and the worry of how they would all cope without me.  In G, I found someone who knew exactly how I was feeling, as she was feeling the same.   We both took part in this years Race for Life in Stonleigh, G as part of "Gails Girls" and me as part of "Jogging for Julie".  My team covered the 5k, but somehow G managed the 10K, I really don't know how - well I do, she had an abundance of sheer guts and determination and walked that course with her 2 beloved dogs, to raise a huge amount of money for a cause we truly believe in.  I will miss my buddy so much, we did talk a lot of doom and gloom, but we also talked a lot of crap and had a huge amount of laughs and cake along the way.  Ive now lost 2 friends to this bloody shitty disease in the last 10 months and we had the news 3 days after Gs passing, Shauns second cousin a lovely lady called Alma had also succumbed to cancer after a long brave fight.  Its all just crap and we need to be able to put a stop to it - and soon.  loosing these precious people from my life makes me value mine more than ever now and I feel that I owe it to them to live my life to the full and to make the most of every moment - as we all do.   RIP G and Alma. XXX

Gails friends are holding a fundraising event on Saturday 22nd August at the Bull Inn in Clifton, Rugby. Here is the fundraising page to compliment the event, please donate if you can.... Huge thanks in advance. Kerry

Thursday, 28 May 2015

Thats it -chemo is done!

What better day than today to update the blog? Today I had my 16th dose of chemo since starting this third lot on Oct 29th.  It been quite intense and has most definitely become harder as the time has gone on, but its done now. Thanks goodness. To be honest though, today is the easy bit of any chemo cycle, I had great company with me again, in the form of my great friend Emma Brown.  We had a great time nattering away, we actually didn't even notice the nurse coming along and starting the chemo off!!!  The day stated off great with Emma turning up at mine with a new tshirt for me to wear, declaring my a "chemo grad" so I proudly wore it all day.   I asked her if we could stop at Tesco on the way to the hospital as I wanted to get some cakes to take to the nurses, but she shocked me by already having an amazing cake made by JJS Cakes for the nurses, so we took it in and they were overjoyed by the gesture and even more so once they tasted the cake!!
So chemo is done, what next?  Well tomorrow I am having a visit form an old school friend ive not seen for a year or two, so that will be great, then tomorrow night we have James football presentation and hopefully over the weekend a visit form my cousin, who will help Shaun lay some new decking in the garden.  Then we have the FA cup, my team Aston Villa against James' team Arsenal.  To be honest I think the cup will be going back to London, I just hope the Villians put up a good fight.
Then Sunday, the fun begins, when I say fun, I suppose I really mean shit! I probably wont even have the energy to get out of bed on Sunday, my mouth with start to feel all slimy inside, my appetite will go, I will feel sick and repulsed at any foody smells that come up the stairs, but I think worst of all I become very intolerant of people!  its really quite horrible, I just want to be in my own bubble and left alone.  That includes my wonderful family, I just cant bare form them to see me in such a rubbish way and just don't like being bothered.  it just takes so much effort to answer questions, even if they are just asking how I am or if I want a drink, its just so much effort to reply, which is just horrible. This will go on until probably about Friday.  Monday and Tuesday will feel worse, my appetite will be non existent and even knowing what to drink is a struggle as my stomach feels so sensitive.  So all I can say now, is roll on next Saturday when hopefully I will start picking up and then I can get on with the rest of my life.
So, how do I feel about the rest of my life? Honestly? I cant bloody wait to get back to normal again, to get back to work, to get running again, to be bale to walk my lovely dog , every thing chemo has robbed me of.  But all for a good reason, the chemo has worked and is giving me the opportunity to keep living. so that's what I will do, but with more vigour, enthusiasm and zest than ever before. But I will always be doing it whilst glancing over my shoulder.  My medical team have left me in no doubt that the cancer will return, it just a matter of when, so I have to be extra vigilant and be checking my body all the time for new lumps or bumps and aches and pains.  So as much as we want life to carry on as normal, there will always be that niggle that cancer could be rearing its ugly head.  But I am sure that will my vigilance and the superb team I have behind me at the hospital and the good reaction to chemo I seem to have we will beat the bastard again.  Though secretly I am hoping that at 3-0 to me the little bugger may just take the hint and not bother coming back. fingers crossed on that one!!
So onto cheerier news, I mentioned at the end of my last blog that I was a finalist in the Rugby FM pride of Rugby awards and im very pleased to say that I won the "Citizen of the Year "award.  What an amazingly proud moment, and all of the family were there too, which was great.  So now I have to think of something - a fundraising event that I can do to commemorate the award.  Any suggestions gratefully received.
Well that's me knackered for the night, I will be back, once im over the hibernation period next week.
I would appreciate any feedback you could give me about this blog - is it ok? is it boring? does it help you understand chemo more? is there anything also you think I could pass on?  Please let me know.

Good health and happiness to you all.


Wednesday, 6 May 2015

So, its been a long time, but its been event full!
Well, what have I been up to in the long months since I last posted here?
Most importantly three weeks ago I had another PET scan, which showed, amazingly that there once again is NO EVIDENCE OF DISEASE in my body. ha, take that cancer, i've kicked your sorry ass again. 3-0 to me, please get the message now and don't come back.  If a hatrick in football wins you the match ball, then I think i've just won life. it doesn't get much better than that.
I wont lie, we had a turbulent time getting to this point, in Jan I was near the end of the chemo course started on Oct so had a scan, but that showed that the chemo wasn't really being effective, it had got rid of the cancer in my shoulder, but had had no effect on the cancer behind my chest wall and even more worrying a new nodule had appeared once again in my neck. this, to be honest was the worst I had ever felt, how could new cancer grow on chemo?  this was not part of the plan. Not at all.  The tears flowed, the protection of the nearest and dearest went into overdrive, not quite telling the truth, but enough o justify the change in drug that was imminent.  I hate to think of those around me worrying, just knowing that I have cancer is enough for some, so I try to spare the details and the scary stuff, especially with out parents and the children. I wan the kids to live as kids and have a worry free life and enjoy their time, they worry when they see me being sick and lying on the sofa for 4-5 days at a time, as parents we need to protect them form all the other crap.  same with the oldies too, they are banned from the house on my bad days, as are most people, I just couldn't bear for them to see me so low - and to be perfectly honest, I cant even be arsed to speak anyway.  Shaun has a hard time those days as do the kids, between them they must ask me fifty time in the day if im ok?, if I need anything? a hot drink? a cold drink? something to eat? anything?  I just about grunt at them, part of me just wants to scream -"I cant be arsed to answer you, I don't want anything, leave me alone" but I cant, they mean well and care so much, so I carry on grunting!!  So the change of drugs, I was within the finish line of the first drug, I should have finished it on Feb 17th, but instead at the end of Jan I started a new round of 6 cycles of a mixture of two drugs ive had before. 3 weeks per cycle so I finish in 28th May and it cant come soon enough now.  The day I have chemo is day one, I don't mind chemo days, I have good chemo buddies, all of whom I love dearly. We have a good time, the nurses are fab and its a day I know I have to do to stay on this beautiful planet. Days 2 and 3 I feel fine,then comes day 4, tiredness hits, I probably just stay in bed, the safest place as my tolerance levels nosedive, so its me and the dog in bed with regular check ups from my 3 carers. Then Days 5-8, well shit doesn't cover it. my mouth goes awful, a white film covering the inside, rendering me with no taste at all and struggling with what to eat and drink, hot Ribena and Mcdonalds milkshake often do the trick, but that's about it. my appetite is totally diminished which is very not me! I swing quickly from a day of constipation to days of diahorea and am basically a zombie on the sofa watching crap TV, I cant watch my favourite programs as I have no concentration and just keep nodding off. so basically its 4 or 5 days of not really being on the planet I so desperately want to be a part of. but its worth it, evry minute of it, to get that clear scan. I couldn't wish for more.  The tears of relief flowed when I got the call, I had to wake shaun from his night shift slumber, the relief for us both was just immense. I let him go back to sleep before I made the round of phone calls to tell the world once again I was cancer free. Again the love shown back to us was mind blowing and I will never forget it.  Obviously, we wnet to our local with friends to celebrate, first off with a pint on the house - thanks The Bell. then we got the news that a friend in Cambridge had called to the pub and put £20 behind the bar for us - this was a lady we have met once, on a trek last year for Breakthrough Breast Cancer but stayed in touch with on Facebook. Was an amazing, kind and thoughtful thing to do, people can just be so wonderful and amazing. Thank you Katie.
So what's next, well, top of the list, is obviously staying alive. Then Lucy has A levels and turns 18 in July, an event that one my first diagnosis in 2008, I honestly didn't think I would see, so that needs to be a big event culminating in a trip to Barcelona. If there's one regret in life I have, its not travelling enough, we live in a beautiful country that we have only seen a fraction of and on an intriguing planet that we have seen even less off, so we need to travel more, starting somehow by investing in a VW camper to investigate Britain and then see how much of the world we can see, but where to start. luckily, I just love making plans, so will be in my element!
I cant finish this post without referring to the amazing TV program from Sunday night "The C Word" the most compelling 90 minutes of Tv I have ever seen, so well written and brilliantly acted, a great mix of hard hitting truths and humour that had us howling. The relationship between Lisa and her brother was great. If you dint see it, its so worth watching on catch up, just such an inspiring bit of TV for once.
Well ive rabbited on again too much, I blame the steroids, why else would I be awake at 2:14am and on a chemo day, I will be the first one at the Polling station at his rate. 
Thanks for reading, I hope it gives you some sort of insight into my life at the moment, and thanks for all of the support shown to us, we honestly couldn't manage it without you all.
Big hugs and lots of love  Kerry. (thats Cancer-free-Kerry!!!)
Ooh, I also forgot to mention, I have been nominated by some very kind friends for Citizen of the Year at the Pride of Rugby awards and am a finalist. so fingers crossed for me please on 15th May. xx
    Page loaded.