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

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