Letter to myself 5 years later

5 years…….5 YEARS!!!!  5 years ago today on 4th September 2013 someone said to me “we believe you have cancer”.  That revelation was quickly followed up with a battery of tests to find out exactly what we were dealing with, 6 rounds of nasty chemo, a mastectomy, 3 weeks of radiotherapy, 13 months of targeted treatment and just over 3 and a half years of reconstructive surgery and that’s not to mention the whole “messing with my head” side of things or the billions of hospital appointments I have had to go to…….it literally feels like 5 minutes ago and also like 5 lifetimes ago all at the same time! 

So I thought today deserved a few words, but what to say?  Well, me being me, I’ve said quite a bit over the last 5 years both in my blog in the early days and on social media, in a bid to raise a little awareness.  It’s been one hell of a ride and recently I’ve thought about how I got through those initial few seconds, minutes, hours, days, week, months and even years?  So I decided to write a letter to myself from the future…..5 years in the future!  The idea being that I could tell myself back then what I know now……..so here goes.

 

 

4th September 2018

 

Dear Jayne, it’s me, Jayne!

4th September 2013 - Well hasn’t today been an utterly crap day!!  You rocked up to North Tyneside General at 9.45am and within 2 hours you had been examined, had 2 mammograms, an ultrasound and been told you had the big C!  A quick trip home to break the news to your folks and to ask them to pick the kids up from school and keep it from them before heading back to hospital so they can spend over 2 hours taking 4 biopsies and do 2 more mammograms.  Feels like you have been hit by a truck? – that doesn’t even come close does it!  So it begins…….you like a good rollercoaster but it’s time to board what may be the worst one ever but oddly enough at times one of the best!   Probably best you buckle up and hold on for dear life!!

Fast forward to 4th September 2018 – You are here, you made it to the 5-year mark!  Not sure it’s time to get off the rollercoaster, not sure that time will ever come, but this coaster has eased up a bit and is plodding along at a nice pace!  But let’s be honest, it hasn’t always been like that. 

Those first few days……not going to lie, they are going to be horrific, absolutely horrific.  You are going to worry non-stop at first – about dying, about not being there to see the boys grow up, about getting through chemo, about being ill, about having to have a mastectomy, about having reconstruction, about treatment not working for you, about having no hair, about your hair growing back grey and curly, about how it’s affecting your husband, children, parents and family.  For a while you are going to eat, sleep and breathe cancer. 

It’s going to be the last thing you think of before you go to bed at night.  Each morning you will literally have one split second when you first wake up when everything is just fine and it’s a split second of bliss before reality hits and your tummy flips and sinks because actually it’s not fine.  It will take time, but that sinking feeling will lessen.  The worry is always going to be there, but you will learn to cope with it and file it away. 

Annual check-ups are going to be hard, annual mammograms will initially send you over the edge especially in the first couple of years as you find yourself back in the awful little room where they carry them out and September will always be a struggle for you as you relive the diagnosis and wait for your annual mammogram results to come back.  Like everything this will ease with time and you will find you cope more rationally with all the feelings this time of year throws up at you. 

The one thing that may never ease is the worry you have when you think about how this has affected your kids, husband, parents and family.  That thought will always make you fill up if you think about it sadly and at this 5 year point I can’t help you any with that. 

You are going to develop a new condition called “scanxiety”.  It’s very common in cancer patients.  Waiting for test results is awful, possibly one of the worst things ever.  Waiting for the early test results to find out if the cancer is curable or incurable is going to be one of the toughest things you ever do.  But thankfully they are going to come back clear – big relief, but quite unbearable to have to go through.  Again, this will ease with time and up to now everything is good.  Fingers crossed that carries on eh.

You are also going to come down with another affliction – “chemo brain”.  Basically it’s like the chemo will zap some previously smart brain cells and you will turn into a bit of an idiot.  Sounds funny and people will laugh and not believe you but it’s perfectly real and you will struggle with bad memory and struggle at times to get your words out despite knowing what you want to say!  That’s going to be hard to cope with and there is nothing you can do to fix it at all sadly. 

Hospitals can be scary places, but you are going to learn that the people in them are utterly amazing.  You and your family for that matter are going to be so well looked after for the duration.  The hospital will even become like a safe place for you.  It’s not going to be great having chemo, but you need to see it as a positive in that it’s getting rid of the nasties that decided to set up camp inside you. 

Your 3 weekly visits to the Oncology Day Unit will actually be filled with fun, laughter and at time down right cheek from the staff.  Leaving after 13 months will make you shed a few tears as you say goodbye (hoping never to see them ever again unless it’s in a pub) and feel fear again akin to the early days as your “safety net” of treatment is taken away.  People will tell you at this point that “it’s all over”.  Ignore them politely cos quite frankly it certainly isn’t over.  Whilst life returns to some kind of normality this is something that is going to stay with you forever and ever.  Nobody can change that, but you can choose how you deal with it and cope with it.  Anyway you have the fun and games of reconstructive surgery to look forward to!!

So how are you going to cope………well most of the time you are going to be just fine.  But you are going to have to make a few adjustments.  Thankfully there will be no vomit……apart from Boxing Day when you will gag and vomit after cleaning your teeth/carpet filled mouth and then lie crying on the floor whilst hubby offers to “hold your hair back” - after this you will stop cleaning your teeth for a couple of days each cycle and you wont vomit!  Simple really! 

You are however going to have one day per cycle where you just lose the plot, this is thanks to the steroids leaving your system as well as all the poison in your system……tears, hysteria, exhaustion, the works.  Family and friends will sharp learn to leave you alone and let you sob and rock quietly in the corner.  Pains me to say it but if you sleep for just an hour on this bad day you will cope a whole lot better!  Trust me and just do it!

You are going to be sore……very sore.  Whilst you score with chemo not making you vomit you lose when it comes to the amount of pain it will cause you.  You weren’t quite expecting that from chemo were you?  It’s caused by your body making new bone marrow that had been zapped by chemo…….who knew bones (and eyelids - eh) could hurt so much!!  Paracetamol and your electric blanket are about to become your BFFs, until the hot flushes kick in then you will want to launch the blanket out of the window which will be now wide open. 

People are going to tell you that you are “brave” – honestly you will want to punch then repeatedly in the face but as long as it’s not your aforementioned bad day you are just going to smile and thank them.  But you aren’t brave at all so don’t go kidding yourself – you have 2 choices – you suck it up and get on with everything you have to do to survive it all or you basically don’t and…..well you die!  Bravery has nothing to do with it and despite having these two choices, in reality you only have the one choice and that is just to get on with it whether you like it or not. 

Friends – well some of them are going to vanish cos they are scared to speak to you.  It’s hard, but in reality no great loss.  However, this “journey” you are on (you will hate that term from day one and that won’t change) will bring you some amazing new friends.  The best thing you will do in all of this is join a forum on Breast Cancer Care for ladies starting chemo in September 2013.  Not your kind of thing admittedly, but thanks to a secret Facebook page set up to allow you all privacy away from the public forum they will be an almighty help getting you through everything! 

7 months after diagnosis you are going to hop on a train on your own and travel to meet 25 of these ladies in Birmingham – seriously out of your comfort zone I know, but what you don’t know is that a few of these ladies will become really good friends who you will have many more weekends with!  These ladies will laugh with you, cry with you, slap you if need be and request slaps off you.  They get you and you get them and that’s going to literally keep you sane!  Sadly, a couple of the ladies closest to you won’t be around to celebrate with you in 5 years time.  That’s going to be really tough on all of you to deal with.  It’s important that you make sure you live life to the full as that was their hope for the future.  I hope they are proud of you.

Speaking out about this illness is going to help you a lot.  It’s good that you haven’t hidden away from it, if you had I don’t think you would be in such good shape both mentally and physically throughout the duration.  Hopefully your honesty will have helped others who found themselves in the same rubbish boat.  You are going to visit some dark places, so it is really important that you keep your mental wellbeing in tip top condition.  Speaking out publicly as the Patient Expert for Breast Cancer Now is going to be rewarded when you play a small part in convincing NICE that the new drug Perjeta that you are about to be given via the Cancer Drugs Fund should be made available to everyone on the NHS.  You can be proud of yourself for doing that! 

You are going to learn a new skill called “patience” and you are going to have to learn it quickly!  This is going to be really important when it comes to reconstruction.  Its easy to think now that you just want it over and done with, but the first thing to consider is all the different options – boobs can be rebuilt from your tummy, back, bum and inner thigh…….who knew!  It’s not a case of hoying an implant in.  Its going to depend on your surgeon and where they think they can best make one from.  It’s going to take a lot of research and many discussions with your surgeon and the reconstruction nurses.  If you want a good result it’s going to take time, time for things to settle.  No point in fixing the good side until the bad side settles!  No point in tattooing a nipple on until both have settled!  So, this bit is where you slow down and sit tight – for three and a half years to be precise, but it will be worth it.  Don’t get me wrong it will still look a bit rubbish at the end, but will look better than if you had rushed it all.  You will surprise yourself with this new-found patience!

For someone who used to worry a lot you are going to learn to worry less, YAY!  Worry less about work for a start – your job is important, but when you return from nine months off and get sent to Nursery (yes you read that right, hilarious eh) you can fight it or you can say sod it – you would win hands down in the bat of an eyelid, but to what purpose?  Not worth the hassle and who knows where quitting will lead.  Well it will lead to a grim 7 months in a school that isn’t for you, but what a learning curve.  It will also lead to some good long-term supply assignments and ultimately a great job in a great school with great colleagues and great kids.  So no need to worry!  Things have a funny habit of working out for the best so just go with the flow!  You are also going to worry less about what people think and learn not to get stressed too much in general, it’s a great skill to have!!

Perhaps the biggest thing you will take from this is that life is for living so you are going to get out there and see the world because it’s a big, fantastic place.  You are going to have some amazing trips on the back of this that you probably wouldn’t have taken if you hadn’t had to face your own mortality.  Make the most of it and just because 5 years are up don’t stop……..keep planning those trips away! 

So, what next – well aside from your upcoming annual mammogram later this month (remember to stay calm and try to be rational) you are now down to annual hospital visits until you are 50.  Its good they will be keeping a check on you and these visits won’t be half as stressful as the early visits.  Remember that and keep your wits about you each time.  What will be will be. 

As for today – it’s a crap day, a really, really crap day, but tomorrow is another day and although you have a hell of a journey ahead of you, you need to wake up tomorrow knowing you can do this!  No need to be “brave” just put your head down and do what you need to do, you will get there. 

 

See you!

Jayne x

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