Wednesday, 5 April 2017

Chemo 4.......DONE!

Well, I have managed to muster up enough energy to update this blog and I cant believe ive not been here since last December - but then I can.  This chemo has been very cumulative and slowly but surely has wiped me out.  All was going so well for the first few treatments, I would have it on the Tuesday and then just feel really rubbish in the following Saturday, but by the end of it, I was having chemo on a Wednesday and would be no good to anyone from Friday up until Monday.  I didnt feel sick or poorly - the drugs see to that, but I have honestly never, ever felt so tired, worn out, exhausted all rolled into one. I even accepted for the first time a sicknote from my Oncologist, the first time in 8 years! Im now eleven days post chemo and in my normal impatient mode im already wanting to get up, out and on with my life.  Sadly that just isn't happening yet. As I write his I can hear Lucy voice "Mother, just have patience, its only been a week!" But, there's me thinking, i' ve finished chemo, I just want to get back to normal, once again i've put a fair amount of weight on and im not going to get rid of that until I can get more active and out and about, but i'm suffering with back pain so staying upright for anymore than 10 minutes at a time is very difficult as is walking for any more than 10 minutes at a time. I know I have to be patient, but I just long for the old me back.  Surely its not much to ask??

So what I have been up to since my last post, well apart from visiting at least one hospital at least once a week and sleeping most of each night and half of each day and fitting in a little bit of work I have managed some fun things too.  I spoke with a lovely lady from Cancer Research Uk who asked if I would be interested in sharing my story, so I said I would but I wanted it to a positive story.  Paula is such a lovely lady, and so easy to talk to she made the whole experience a lot of fun and we finished with the following - a cringeworthy singing performance by myself, saved only by the beautiful voice of my wonderful friend Kate. It may be a cheesy song, but the lyrics are absolutely spot on.  We were in the car on the way home from a chemo session (and a cheeky Nandos) when my favourite ever song came on the radio, and its not really a song heard that often on radio 2!  Without friends an family around me, this crap experience would be a whole lot worse.

So, how do I feel now that treatment is finished? Apart from being absolutely knackered beyond belief, there is the obvious sense of relief that it has finished and I can start to think about getting my strength and fitness back and as a family we can get some normality back.  But there is also the overwhelming sense of fear of what is still to come.  I have  CT scan this evening and then a bone scan on Friday and then I get the results ten days or so afterwards, so I still have another couple of weeks in limbo - has the chemo worked? How well has it worked? Has all of the cancer gone?  All questions liable to pop into my head at any timeof day or night ready throw me off track of whatever I was (slowly) trying to attempt.  This period of waiting for scan results is widely known as "scanxiety" and for good reason.  Its just the worst time with so many questions going round my head with absolutely no answers until we step in the room again with my oncologist.  For the first few minutes when the Prof has read out the scan results, the actual results don't matter, the overwhelming sense of relief is phenominal.  Its like waiting for exam results but lots of times over, but its better to know that you have done badly than to be kept waiting and waiting for the results.  Once that overwhelming sense of relief has passed, then I generally look straight to my fab nurse Sheila, she always knows just what to say to me to keep me calm and understand things rationally, where as the Prof is all about facts and figures and keeps things quite clinical.  Then we can start hopefully picking up our lives again getting back to some normality.  Im a 'planner', I love having days/nights out booked and in the diary, holidays booked and fun things planned.  That's one thing I hate about chemo and cancer, not being able to plan too far into the future. We have booked a couple of things for the next couple of months, but that's me banking on the chemo having worked and not having to have any for a while,but I cant look as far as a summer break yet or the cruise we would like to take at Christmas, it will be for those which isn't me at all, I like to book and plan and explore where we are going on line first so we don't miss anything when we are there. But, hey, I will just be grateful to get anywhere with a bit of sun this year, no matter how late we have to book!  Right now I would kill for even a few days in the sun, on a white beach, pina coladas on a regular supply and for all of that vitamin D to work its magic on me.
I was asked a couple of weeks ago by a friend a few thought provoking questions about being a cancer patient and how I cope. Its strange really, there are no right or wrong answers on how to cope. To be honest, even after 8 years, I still dont see myself as a  cancer patient - a chemo patient yes, but not a cancer patient.  Am I just burying my head? - I don't know, probably, but whatever it is it works for me.  Im not for one minute saying I don't worry, of course I do.  I just cant bring myself to think of the worse case scenario, I cant dwell on not having a future or seeing my kids get married or become parents themselves, or Shaun and I not retiring to Devon one day,  that's too much to comprehend, instead I choose to focus what energy I have on the things I am in control of. So now its time to put what energy I do have  into my diet and exercise so when the next inevitable round of chemo comes along I am in the best shape I can be to fight it again.  Im in a vicious circle but cant allow myself to be dragged down into the whirlpool.  I like to see it not that I  am dying from cancer - but more that I am living with cancer, and doing a pretty good job if it, I certainly feel like I am the winner. 

All of this is helped by being part of what I think is a pretty amazing family - in the last few weeks James has been offered an bodyshop technician apprenticeship with BMW starting in September (a firm middle finger to the Primary school teacher who wrote him off in year 3 as he "will never be as good as his sister!" This was after I dragged the poor lad to a blood transfusion day, knowing I had him sat with me for 6 hours, with no where to go and little to do but apply for apprenticeships! (Thank God for free Wi-Fi at the hospital).  Then last week Lucy was offered an Events role for her year of work placement, which is great in itself, but the icing on the cake is that it is half an hour from home, so she can come back to live with us. It will be fab to have her back home, though it has been great seeing how she has grown into such a lovely, strong young woman whilst in Sheffield.  When I think of all that these two have been through for such a long time I could just absolutely burst with pride when I see what gorgeous, funny and kind adults they are growing into.

I have also been following a local lad on Twitter @alexs_journey.  Alexander is 9 years old and from Lutterworth and just a pure inspiration.  This lad has been through so much in his short life, (Ewing Sarcoma cancer in his leg and hip) but regularly posts videos updating his followers on his progress and he nearly always has the brightest of smiles and such a great positive attitude.  He and his family are currently in Kansas where he has had some amazing surgery and is now receiving chemo before more surgery.  Please follow Alex on facebook and Twitter, he really is an extraordinary lad, I would love to be able to pick him up and just give him the biggest hug - if you watch his videos, you will see why!

Once again I would not have gotten through this last lot of treatment without the love and support of my family and friends.  Where would we be in life without good friends - and food parcels (Thanks Big Sis)!  Thanks you all who have checked on me, bought me food, chocolates, Guinness and  flowers, or  just popped in for coffee or dropped me texts to see how I am going.  Not forgetting of course my wonderful chemo buddies who make, what should be a crap experience,  quite a  manageable one.
 Please know that every little act of kindness goes a very long way. xxx

Tuesday, 13 December 2016

That's round 2 done and dusted.
Before you start reading - I apologise for any typos, I like to just type and then post, no reading back, that way, you get to read how my brain works, a proper ramble as apposed to a finely honed one.

So I was reminded today that I hadn't updated my blog in a little while, so here I am doing as im told updating my blog.  We had time to chat today about said blog as my wonderful friend Emma took me to my 2b session of chemo today, so very kind of her, but she will do anything on the promis of a cheeky Nandos.  Anyhow, the day started by here picking me up at 8:30 am, negotiating all the bloody road works in and around Rugby and a very slow M6, we got into the car park of UHCW at about 9:10, plenty of time to park for a 9:30 appointment. Well it would be if they had anywhere near enough parking spaces at that place to facilitate all of the cars that need to use the bloody car park!  So in the end Emma had to let me out so I could register in the Arden Centre - the nice blue building for the cancer people, and I ahd to abandon my dear friend in the battle field of a carpark fighting with the other 20 drivers to get the one available space. That, my friends is the true dedication of a friend right there.  Anyway, I went to register, for my 9:30 appointment, only to be told that my chemo brain had obviously got the better of me this week as my appointment was actually at 12! oh, bugger, that cant be right, so I checked my diary on my phone, oh bugger, that says its ats 1:30, so to be perfectly honest, at this stage im just feeling lucky that im in the right place on the right day.  So as Emma walkied into the building proud that she has driven strong and musceled her Focus into some kind of space I had to tell her we had a bit of a wait - or we abandoned ship and headed to Frankie and Bennies for breakfast.  at this point you may notice that food plays a HUGE part in chemo day  - and quite rightly so, im going to be constipated for the next five days so I may as well be full of nice stuff! Anyway, we were rescued after a half hour wair by the outstandingly amazing staff in the Arden centre who found me a chair in the chemo suite ans swiftly got on with my treatment.  The nurse Lorraine has treated me many time before (well the odds are high as at a rough guess this was chemo number 49), so we had a chuckle at me chemo brain etc, but she crammed me into her already busy morning, for which we were very grateful.  So I was quickly plugged in, anti sickness and steroids pumped in and then in went the poison, jobs a good'un and we were out and in the car by 1 and back at rugby nandos by 1:20.  Not a bad way to spend a morning, noted, there are musgh better ways to spend quality time with a great friend, but like she pointed out, its better to be getting life saving drugs than shopping, and i raise my hat to that.  Im here to spend another Christmas with my family and friends and there is no better feeling.  Ho Ho Ho and all that schnizzle.
So as I said early tioday was chemo 2b, that means it was the second dose in the second cycle. for those of you not yet asleep, may be aware enough to know I should be further into this regime by now, but ive had a rocky road over the last month.  I had the foirst two chemos without any bother and felt ok after them intome for the second cycle to start. so I had my bloods taken the day before the second cycle should have started and then happily went to work. But shortly after lunch I got a call from the arden centre to say my white blood count was too low.  It was at a point that had they given me chemo ,my immune system would be heavily compromised and I would be open to all kinds of infection and then not have the ability to fight anything off, so just not safe for chemo. So the plan was to have a weeks break then to enable the count to increase in time for the following week. so I went back the following Monday, got my bloods done and went to work.  I left work at four, happy that the Arden centre had not called and confident that chemo would go ahead the following day. Pah, all good plans, as soon as I walked in the door at home, the phone went and sure enough, the news that my bloods had actually worsenened. Bugger, bugger, bugger. only one thing for it, take to the sofa, so I did for 4 days, I behaved impeccably but also had 5 days worth of injections to self administer to help increase my white count.  Self administering, I can do, ive done it before, and by a stroke of luck I have a scar strechong from hip to hip form my reconstruction that still has areas of numbness, so I pick the target carefully and don't feel a thing.  The injections help draw white blood cells from my bone marrow and circulate them into my blood stream, great mews for my blood stream, not so great for my bone marrow.  The only way I can describe how this makes my body feel is to compare myself to a cartoon character, one that gets hit my a baseball bat ans shatters like glass into a gazillion pieces.  Fragile is probably the most apt word, but the bootom of my spin acroos the top of my hips ans the tops of my arms feel like this, so sore and fragile. the strangest feeling ever.  Luckily, I am a model patient, so none of my family have yet felt the need to use said baseball bat on me!  But, as luck would have it, the injections worked a treat and I was goo do to for chemo, the following week (last week).  I saw the most wonderful Professor Poole before treatment started, and he was happy with ow things were going, my white blood count had risen very well, infact form 2.3 to a very impressive 27, with 3 being the norm, so I hopefully have quite a buffer now to carry me through the next few treatments. My CA-125 results were also showing good signs, with a good reduction, this count is used to moniter the level of cancer in my body and is reducing at a good rate, which is fab and definitely helps me sleep at night. 
As you may expect, ive not been100% good, ive still been working - well why wouldn't I? I don't want to stay home being billy no mates and eating myself silly.  Ive also had a couple of days out to London, taking in the Beautiful musical - the story of carole king, a must for any theatre lover,but take a good friend, these occasions are always more enjoyable spent with special people, and also a wonderful carol concert at a church in Sloane Square for the equally wonderful Childrens Air ambulance, followed two days later by one at Leicester catherdral for our local air ambulance services, I am always honoured to be involved with these types of events, im lucky to have a job I love.  as a family, we also managed a trip to the seaside to see family for a weekend, which was just fab. Lots of laughs and huge hugs and of course donuts on the sea front.  Ive also had an electronic drum kit bought me for Christmas and been brave enough to take my seventeen year old son out for driving lessons, and been very fortunate that our daughter thinks nothing of driving home from Sheffield to cheer me up on my bad days - though she did have a good incentive this weekend,  Shaun has worked for Mercedes AMG-HPP for nearly 18 years and they always give their staff the most amazing Christmas parties, and I missed my first one last Saturday,taking the sensible option of Donimoes and a a Christmas movie night on the sofa, but Shaun took the perfect replacement in Lucy.  As an events management student - what better event to give her incentive to succeed, a lavish, no expense spared venue, free food and drinks and the chance to mingle with the drivers and management of the greatest F1 team everand even a guest appearance by Dizzy rascal!!   This weekend we are going to see my sister, B-I-L and nephew for a Lancastrian Christmas again lots of hugs, probably as many tears, good food, good alcohol for the others, but at least a day on the sofa for me, but one spent with loving family never the less.  I have been given yet another shot at my life and whilst I appreciate the importance of looking after myself, I also have to live that life, make memories and have a bloody good time with those I love most and the ones who want to make memories with me. You only get one shot at life kids - we need to make the very most of it. 
So, chemo is back on track, the lovely Prof Poole is giving me Christmas off, so no more until 3rd Jan, freeing me up for a Christmas, Shauns birthday and New year of feeling good (and hopefully able to enjoy a rum or two!).  Thnaks once again for reading, just incase I don't update before the big day, I wish you all a very happy and healthy Christmas and New Year.
Lots of Love
PS. I have to confess to having some help with the writing of this blog, photographic evidence supplied..

Sunday, 13 November 2016

.........and we are off...

So here w are, very much in the chemo rollercoaster yet again.   This one, as usual is a 21 day regime  Todayis day 13 - and I'm still alive.   Thats always a bonus - hey?   So, whats a 21 day cycle then?  here goes, the best way i can explain things.  i am having a drug called GemCarbo, which is made up of Gemcitabine and carboplatin.  Carboplatin is my best friend, this is the drug that undoubtedly has kept me on this planet for the last few years, and horrible as it is, i would have it everyday on my cornflakes if i needed to!  Anyway, back to 21 days, On day -1, so the day before treatment, i have to have blood tests done too, just to check that i am in healthy position to have the chemo, theres no point having it,  if its going to ouch me over a healthy edge where i can't fight infection or anything else that comes my way.  then on day 1 i go to the hospital and have both drugs administered into the shiny new port i had put in, in the right hand side of my chest. this is due to the fact that all of my veins are shot, totally collapsed due to the damage from all of the chemo i have previously had.  This actually is a relief, having a port in, or my piece of lego sit is affectionately known.  within minutes of sitting down in the chemo suite, once my name, agrees, DOB, hospital number have been checked, the first round of drugs are already going in.  This first round, is a small amount of saline to make sure all the tubes are working and then some anti sickness drugs to try to keep the nausea away.   Tis particular chemo is given over an hour and a half, followed by more anti sickness and then a final flush of saline to clean everything through.  so the whole process takes less than 3 hours, which is manageable, both for me and my partner in crime for the day.  I am very lucky that i have a number of friends who are willing to come and spend that time with me and make the experience as stress free as possible.  So, thats day 1 done, i go home, knackered, but with the knowledge that the steroids i have been given in my "take home bag of drugs" will disrupt my sleep for at least the next 3 nights. i find these nights quite hard, i can lay inbed, my mind racing, aware of all of the things i could be doing, thoughts like "ooh, i could get up and make a cheesecake" but then my body is like"oh, oh, your going nowhere" and refuse to get out of bed.  Its so frustrating, but I've been  in this situation enough times to know not to fight it, nt to wind myself up, just accept that this is life for the next few months, just enjoy the rest! I managed to go to work on Days 2 and 3 and for this i am very thankful. i woor with me truly wonderful and supported people some of whom i class amongst my closest friends. Its good to be at work, keep some normality and try to tire myself out to enable a good nights sleep.  That bit doesn't necessarily work, but i try!  Friday was day 4, after being awake through mot of the night, i didn't wake up until gone 10 am, which is great and helped me catch myself up.  I don't work fridays, so for this week i had booked myself a bit of a treat.  A drum lesson - yes, a lesson to play the drums.  this is something that i have wanted to do for many years, but never had the confidence to do, but i just figured, if i don't do it now, then i never will.  Amazingly, there is a music studio less than a mile form our house, offering drum lessons, so i booked myself in and off i went.  Now, I'm a totally honest person, and i would never kid anyone that i have a single ounce of rhythm, so this could be interesting.  The hour passed in a flash and i had an amazing time, i can't rememebr that last time i had to concentrate so hard, but i really enjoyed and am ready or the challenge.  Friday night then was a takeaway from the local indian (at this point, I'm very happy to report that my appetite is still very much alive).  Onto Day 5 - Saturday, two world for this day - write off.  A day of lying on the sofa, saved only by boxsets on Sky.  our first choice is Scott and Bailey, never watched it before, so its got to be worth a go.  the good things about these days and boxsets is that it also get Shaun having down time too.  So we had a greta day, slowed out on a sofa each, Ralf curled up with me just in our own little world.  We should have gone out to a friends on the Saturday night, but i think pretty much my lunchtime i had decided that that was a no go,  there was no way i had the energy to get bathed and dressed and out and then be bale to actually converse with people, so sadly we cried off, but then with that came the relief that the decision had been made.  This ie=s where i plan to do things differently this time, previous chemo, i would just plod on with plans, nit wanting to be beaten, but I've finally realised that its only myself getting beaten if i continue to try to do everything.  this time, its all about relaxing.  Day 6 Sunday, a lot better than day 5, i felt more awake and my body wanted to work alongside my brain a bit more  - and i also had the boost of Lucy coming home for a few days too. Sio we just had another lazyish day.  Monday i felt "almost normal" and sent the day at work, ready for Day 8 - second chemo day.  This is pretty much the same as day 1, all the same drugs administered in the same way. The following days then followed as they had done the previous week.  so a couple of days at work, than a weekend of not being so good.  Our wonderful d=friends Georgina and Peter with Dan bought us a lovely tea round last night and spent a very gentle ebvenubg with us, which was great.  More and more now, to me time is so important, time with people that matter, making memories and having fun. So, now its Sunday, i feel okish, lethargic but ok. But now i have 9 days before the next round of chemo, so thats none days of feeling stronger each day and building up my strength before knocking it back again with round 2 of chemo.
With any chemo regime, you get sent home from the hospital with the obligatory list of side effects. Woohoo, so what i have i gt to look forward too?  Amongst others, flu like symptoms (not yet), a rash (oh, yes), headaches (oh yes), aching joints or muscles (not yet),  feeling sick (oh yes), loss of appetite (not yet thank god!), breathlessness (going uo stairs), Tiredness (in abundance), sore mouth (not yet, but get ready McDonalds, your milkshakes are lifesavers), Constipation (yep, nice), Diarrhoea (yep, just after conception, for what seems like forever!)  So, wow, what a few months we have in store, but I'm ready for it. Bring it on, I'm ready for the fight.
Going back to memories, the day before chemo started, i fulfilled a life time ambition of riding in a hot air balloon.  What  day, spent with one of my bestest friends 2500m up in the sky. Thank you Emma,  it was just amazing, so I've shared a couple of photos with you.
I hope that you enjoy reading this blog, and it helps make some sense of what goes on in the life of a chemo patient, and how, pretty much like an F1 team, it is about teamwork.  I couldn't cope with what my life is if it wasnt for my wonderful husband and kids, my sister on the end of the phone, my friends with their constant stream of texts, people feeding us and being with us and supporting us.  You are all ace. xxx

Monday, 31 October 2016

Time to buckle up and get on with it..

I have had the most amazing afternoons, with one of the most important friends in my life.  Emma and I finally got to have our hot air balloon ride, after 5 cancelled attempts.  We got a message yesterday afternoon telling us that there was some space in a balloon taking off from Rutland Water today - if we wanted them.  Boy, did we want them!  What an afternoon we had, well, only any hour or so in the hour - but what an hour.  We were treated to the most beautiful of views over The Waters and across the neighbouring villages, the colours in the trees were just wonderful.  We both made another tick on our buckets lists today - and we did it in style.
The landing was fantastic, very controlled and smooth, but now I am home, I am most definitely coming back down to earth with a very large metaphorical bump.
For tomorrow at 2pm, Shaun and I have to take ourselves back to the Arden Centre at University Hospitals Coventry and Warwickshire for me to start yet another course of chemo - for those who have lost count, this is my fourth battle with the bastard that is cancer.  Or, looking at it a different way, after using all of my fingers and thumbs, this will be, I think, my 45th dose of chemotherapy. Yep, 45th, no wonder my memory is shot and my brain and body dont work quite as fast or effectively as they once did.  But, still, I am a glass half full person, so I can still see that I am still one of the lucky ones.  Im still here, I got to celebrate James turning 17 on Saturday and saw him take his first driving lesson.  this is a huge landmark for me as when I was first diagnosed, one of my main fears was that I wouldn't get to see that momentous occasion, but I did.  I still get to text Lucy in Sheffield everyday, and thanks to work, got to spend a special evening in London with her last week. I really do appreciate that we all still get to make memories and have good times together.  Shaun and I have had a great year, travelling in our campervan, taking in out first festival and just having a great time, but this just makes me greedy.  the more good times I have, the more I want, im a long way from being ready to give up this fight, I just wish the bloody cancer would get the message and fuckety fuck off to somewhere else.   This doesn't help the nerves tonight though.  I think i can be bold enough to say that im not scared of the cancer - I really don't think I am, but I am petrified of what the next 4 months or so have in store for me.  Im not sure if it is better knowing what is coming - or at least having a bloody good idea or going into the whole chemo thing with no knowledge.  probably the first option, but that is still a crap option.  I already know im going to have days and days of constipation, followed by days of the reverse and being to scared to move over 5m from the nearest toilet and no option of daring to leave the house!  Then theres lack of appetite, loss of taste, tingling in fingers and toes, constant sickness, 20 tablets per day to try to ward off the side effects and no doubt a whole host of side effects that ive managed to push to the back of my mind over the last few years. oh yeah, the sleepless nights due to the steroids, just to add insult to to injury of the weight gain the steroids also bring.  But, im one of the lucky ones, I have friends queuing to come with me to my chemo sessions, to help them go quickly and with a little amusement and no doubt a small amount of childish behaviour.  I got home today, to a wonderful home baked pie for us to have for tea tomorrow when we get back from the hospital (thanks Lee and Deb).  I have a fully supportive workplace with wonderful colleagues and friends. If I had to thanks cancer for one thing it would be the ability to step back and assess how blessed Shaun, I, Lucy and James are to have such wonderful friends and family in our lives - im not sure how we will ever be able to say big enough "thank you's" to everyone.  Even Ralfy had been thought of with people offering to walk him.  I am one of the lucky ones. Im going to try to update this blog on a weekly basis (under instruction today from Emma!), so if you get bored, blame her.

Thursday, 25 August 2016

Oh FFS, here we go again.......

When I started this blog, the intention was to update it at least once a fortnight. Its not quite happened like that though!  I know why though, to begin with, I was back on chemo and feeling  very rough alt of the time, then when the chemo finishes, its all about getting on with life which is what we have been doing.  Every so often I have the thought that I should get on here and update, but something else always seem to get in the way.  But today is a day that's cant go unwritten about.
When I was first diagnosed with breast cancer nearly 8 years ago, I had a flurry of horrendous thought run through my head.  One of which was that I thought that I wouldn't be here to see my beautiful children through school.  Well today that thought was well and truly  put to rest.  Today Shaun and I took James to school to pick up his GCSE results.  I cant count how many times I have cried myself to sleep worrying that I wouldn't get to see to see Lucy pick up he GCSEs and so to be here to see James get his just didn't seem possible. But it happened, and our boy did good. For  akid that hated very single day of his school life, he did incredibly well and can go on to do his chosen college course.  So in the last year, Lucy has got her A levels and in a flash completed her first year at uni and now James is a school leaver - where have our babies gone??
But as the title of this chapter would suggest, this is not the only news that we have had lately. Sadly, not all news is as good, and this certainly isn't. in fact its crap, well worse than crap.  It is actually just bloody ridiculous. After I reported familiar aches and pains to my lovely chemo nurse, it was confirmed to me on the day of James' last GCSE exam that my body has succumbed to frigging cancer again. Yep, here we go, ding ding, seconds out, time for round four.  Round four? Round four? it just seem unthinkable.  I have always been told that this is my life and it will keep coming back, but I recovered so easily and quickly from the third round of chemo, that I really did, honestly start to believe that actually, I may have defied the odds and beaten the evil that is cancer.  But it just wasn't to be. So, there you go, its back, again, it obviously hasn't got the message yet.  Yes, I survived long enough to see Lucy go to prom, get her GCSEs and then her A levels and then go to University and then have so much pride seeing her adapt so wonderfully to living away from home.  Yes, I've seen james survive school, get his GCSEs, helped him plan his short term future, heck, my boy has even started shaving.  Im so grateful to have been here for all these milestones, but I'm greedy, Im a mum, we are a family of four, the more I'm here for, the richer our lives get and then obviously the more I want.  So now I need to see Lucy graduate, James complete a college course and get an apprenticeship, Shaun and I only have three years to go to our 25th Wedding Anniversary.  I want all of that and more. 
So this latest diagnosis is more than a little inconvenient to say the least!  But, there is good news.  When I was first given the news - tumours in my neck, shoulder, chest wall and lungs, my immediate thought was, thank goodness, Ive had it in all those places before, this is nothing new, I have  beaten all of this before.  This, again, is a battle that I can win.  theres no doubt it will be a long, hard battle, but its certainly a battle that im not scared of. Well, more accurately, im not scared of the cancer, but the same cant be said of the chemo. Im in no way looking forward to that, but if that is was it needs, then that is what I have to do - im not saying I wont moan about it along the way but I just have to shut up and put up and get on with it!  So, back to the good news, my team at the hospital have looked at my bloods and my scans and are not too worried - that's a relief. they say that all the tumours are small and my blood count at the moment is 22, anything under 36 is classed as "normal", so I am actually considered as normal, which is fab. So for now, im just on monthly assessments, chemo will come, but its not imminent.  the rate at which my blood count is increasing gives me around 4 months before I will move out of the normal zone. I have to use that time to get myself as fit as I can, and try to loose some of these chem pounds ive been carrying around for far too long.  im currently 4 stones heavier than the day eight years ago when I was first diagnosed.  Ive read lots about ketogenic diets, and how  some ladies who have strictly followed the diet have reported that their tumours have shrank or even disappeared on the diet.  Im at the point now that I will try anything, im pretty realistic in thinking that it probably wont cure my cancer, if it could, why isn't every cancer patient following it, but if I can loose a few pounds along the way then its a win win situation anyway.
The plan of action now then is just to live life a month or so at a time, daring not to think too far into the future, because as soon as chemo starts then life is effectively in on hold.  But, the important thing is to do it with smiles on our faces, being grateful for every day that we have and making the most of every opportunity that comes our way.
Im so lucky to have such a wonderful family and some amazing friends that have just offered us so much support again.  I was dreading telling people of the latest setback, its just embarrassing, and boring, hence the title of this chapter. "for F**ks Sake Kerry" was by far the most popular choice of words for the reactions of my nearest and dearest.  Im so grateful for all of the morale and practical support that we get.  We are very lucky people. 

Sunday, 20 March 2016

So, its been a while.......but lets get fundraising.

It has been a while since i've here, so what's been going on?
Well, quite a bit really, after my last post things went downhill for a while, and I had a few weeks of feeling quite sorry for myself, which is quite confusing as I have never felt like that before.  I think that I felt that I had no one really to talk to about how I really felt, no one to share my fears and worries with.  I had that with my two "cancer friends", but they are no longer here for those frank chats about hopes and fears and all the shit that comes with cancer.  I have friends and of course Shaun and my sister, who I could quite easily sit down and talk to, but I never feel that  I want to burden them with such worries.  So work very kindly gave me some time off, but did express that they thought it was time that I saw a counsellor. Yikes, this is something that I have avoided for the last 7 years, but they have been so good to me, I felt that I owed it to them to do as they asked.
I had heard of The Hummingbird centre from a colleague, a drop in centre in Rugby for people affected by cancer, so after a quick Google I found the opening times and details, took a very deep breath and walked through the door.  I couldn't have had a warmer welcome, Helen the founder, soon had a cup of coffee ready for me and I was welcomed to the fold.  After enquiring about counselling, I was told that they would be able to help me within a couple of weeks.  I walked out knowing that I had found a very safe retreat.
Over Christmas we enjoyed an amazing family holiday, cruising the Caribbean, taking in Jamaica, Mexico and Grand Caymen, it seriously was a holiday of a lifetime and just what we needed.  The down time gave me a chance to put things into perspective and try to make some plans for the short term future. I'm still too scared to think long term.  For me, I have scans very 6 months, and that's the bite sizes I live my life to for now.  So first in the agenda was to go down to a 3 day week at work, changing that life/work balance into the favour of life, rather than work.  Instantly I made the decision and said it out loud, I felt so much better, like a huge weight had been lifted.  Now, ten weeks into a three day week, I love it. I don't feel like im sinking - at home or at work, I feel that I can cope with what each day throws at me and i have time to fit in the things I want to do as well as the things i need to do.  The most amazing thing is that I have even managed to get birthday cards bought, written and posted on time which for me is a great achievement. 
So in the new year, I also started my counselling sessions, after the first one, I walked out with my chest puffed out, standing tall and feeling very proud of myself.  I realised for the first time that seeking counselling isn't a failure, in fact I think it shows strength. For the first few, I didnt speak much of cancer, but of things in my life that had worried or upset me before, but the cancer had just magnified the problems.  But these were the things that kept me awake at night, and maybe I worried about these things to save myself from worrying about the cancer.  I still go to the hUmingbird Centre most weeks as I have met some lovely people there and its a great place to be.  All of the people sat around with coffees and cake, know just how I feel and I know how they feel.  We can help each other with that, with how to cope with chemo, what foods to avoid or eat more of.  Its just a safe place to be for a couple hours a week, where we can swap stories, fears and hopes.  That's good for me, a couple of  hours a week where I can share my story and try to offer help, guidance and advice to others, but also to learn from them to and listen to their stories.  Its not all doom and gloom though, it seems we nearly all have dogs so we chat about them, we all love cake, so we all eat that and we have a good laugh.
Keeping busy is the key to survival, it is for me anyway, keep busy and don't think too much, and certainly don't google too much! I bake  - a lot, it is my therapy.  Im doing 2 treks this year for the Air Ambulance Service, on in The Peaks in May and one in The Lakes in Sept, so to raise the sponsorship I am baking cakes and selling them to colleagues, which is fab as I get to bake as much as I want, but don't have to eat it all!  I love the work I do for our local Air Ambulance, knowing that indirectly, all of the actions that I do between the hours of 9 and 5 on my 3 days a week are helping to save lives, to keep families together, it makes me very proud of myself and my colleagues.
I am also on the committee for The Strawberry Festival, and upgrade of last years Strawberry Tea Party that was initially my friend Gails idea, but was held in her honour after she so sadly passed away 5 weeks before the event.  These events are amazing, last year we raised £10000 for Breast Cancer Care in an afternoon, serving vintage afternoon teas, there was face painting, a Pimms bar, massages and treatments and an amazing raffle. It took some planning and organising, but we gave a great afternoon out to a lot of local people, and this year we want to do it bigger and better.  I want to be involved with this, I know as a cancer patient, how valuable these events are. I know that if events like these had not been running for many years then I would not be here now.  These events have helped raise the funds to support some of the research needed to get me where I am today and we need to keep on raising these funds to get us nearer a cure.  I read a lot about the research that is going on, and it really is an exciting time, there are major breakthroughs being announced almost weekly now, but this can only happen with the generous donations that the public make, whether personally, or indirectly, by coming to an event like ours and buying entrance tickets, raffle tickets, teas, cakes etc, and having a great time doing it.  So if you are in or around Rugby on Sat 25th June, please come and join us at The Rugby Lions Ground on Webb Ellis Road from 1pm.  Afternoons like this need to be supported and supported well, there can not be many of us going through life that haven't been touched in some way by cancer.  I for one would not like my children  to have to live through their own cancer nightmare, the more we can do now to help fund the research will hopefully pave a away for a cancer free future for the next generations.  I go into each Christmas, each birthday wondering if this is to be my last, I worry about whether I will see my children marry, will I get to see my Grandchildren? I think i will rock as a crazy Granny and it scares the crap out of me that I may never get the chance, so hopefully, if we all do our own little bit to help fundraise, one day we may just get there. With a little bit of luck and a bit more research I will be here for many years doing my bit. its the least I can do.

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.