The Cancer Diaries

Cancer, cancer is destructive in oh so many ways and not just for the person that has it. My friends and especially my family have had to go on this journey with me (and in the case of my family they had no choice ;o)  and I know that it has not been easy for them and they are still dealing with issues.  It was not easy when my sister was tested as a donor but was not a match, it was not easy for my nephew who wanted to help but ended up in tears at school, it was not easy for my parents to not be able to fix the problem and it was not easy for my niece who had to learn the difference between cooking times for microwaves and ovens the hard way.  It was probably a lot easier for me as I had no choice and just had to deal, but still this week the shoe was on the other foot as dad was in hospital (he got out tonight) and I had to choose whether to stay up north or come down for chemo.  I came down but am booked on the silly o’clock bus to go home again tomorrow.

Tonight I also realised that I have kind of being living life in neutral and waiting for the treatment to end.  But what happens then?  Do I continue not doing anything just in case it comes back and yes it is easy to be confident that I am cured when on the chemo but what happens when they take those training wheels away?  I have started to make small steps, I am doing my degree and I am training for the children’s panel but what about the bigger picture?  Ok I am very good at saying what life does not involve, no size 10 clothes, no offshore bank accounts, no marriage and certainly no kids now but I have decided that I am going to use these next few months to work out what my life does involve as once my treatment is finished I am going to try not to sit and worry about cancer coming back as life is far too short for that – take it from someone who knows.

Thank you everyone for my birthday wishes.  How time flies.  This time 2 years ago I just discovered I had a blood clot, as I had trouble breathing and my left arm and hand had swollen up, but this year I am away on a training course and living the high life in sunny Inverness.  This morning I woke up in a hotel room instead of a hospital bed (although the room smells kind of the same ;o) and while the day was spent trudging my way through legal terms and documents it was still a much better birthday than that one 2 years ago – although having all my family with me then was amazing (but that morning I kind of wondered if I would make it to see the evening).  It is days like today that I truly realize how lucky I am.  I am getting a second chance at life and I know that my life is going in a very different direction, a better direction, (a God led direction) than it was before I was ill.  Before I became ill I would never have thought of doing something like this, as I would have thought it to difficult for me, somewhat above me.  But now I am willing to give these things a shot, as life is too short not to try and at the end of it all I would rather say that I tried and failed rather than I was too scared to try at all.

Happy New Year, may 2018 bring you many blessings and much joy.  This year is going to be an interesting year for me as this is the year that I will finish my treatment – this both excites me as well as terrifies me.  It excites me because I will be finished and will get my life back and because this last dose of chemo floored me and it has taken me weeks to get any kind of energy back .  It excites me because I have no idea what my life will look like at this point next year.  It excites me because I will no longer have to worry about catching something and being in the same room with someone who has a cough or sneeze will no longer send me running.  It excites me because I will be one year nearer to being “cured”.  But it also terrifies me because I will no longer have the support of the chemo and while that stuff is poison in many ways, it is also the thing that keeps the leukaemia away.

So what are my New Years Resolutions?  Like many of you I have lots of plans covering everything from my organisational skills to weight loss and exercise (Scottish Slimmers will be amazed at how much weight one person can put on over Christmas and New Year).  I also plan to spend more time with God and I hope to try to listen more to Him and to trust Him with the direction that my life is to go in.  This is a New Year and will be (at some point)  a new start so lets take a deep breath, dive in and see where it goes.

The worst thing about being on steroids (apart from the amazing weight gain I achieved this week) is coming off them.  Today has been awful.  Doing anything has taken more effort than I thought possible and the funny thing is that it has probably been the same every time I have come off them but you forget until it hits you again.  I have no idea why people would do these drugs for fun, NONE.

On the plus side I am beginning to see the end of treatment and making plans for next year when it is all over.  I have recently applied to be on the local Children’s Panel and have been accepted and will start my training next month.  I have also been down visiting my family and all I can say is sorry to everyone on facebook as I have no control over what happens when Fiona gets my phone ;o)

So what does next year look like?  Well there is my uni course (which I may need to study for before then) and the Children’s Panel and a job (I hope – if anyone is mad enough to take me on) and who knows what else.   Today I may not be feeling my best but I am however looking forward to what the future has is store (so long as it keeps the surprise on the lighter side of life).

Today is a very special day for me. On this day 2 years ago I was first taken in to hospital and told that I had ALL. Up until that point leukaemia was only a word to me, a scary word, but just a word – now it was real and something I had to beat. As I sit here now and write this I do realise how lucky I am. So many people have lost this fight, old, young, married, single, mothers, fathers, brothers, sisters, sons and daughters it does not discriminate against who it takes, but take it does. Yet here I am. Over the years I have never wondered why I ended up with leukaemia but I have wondered why I am still here when so many other are not. I wish I could tell you that I have an answer but I don’t. What I am however is SO grateful. Grateful to still be here, grateful to God, grateful to my family, grateful to my friends, grateful to the strangers who have donated blood and so very grateful to all the staff who have helped me have this second chance. The person I am now is very different from the person I was 2 years ago. I worry more about the people I love and less about me. I try to be a nicer, better version of myself. There is much from my past that I am not proud of but I look to the future now and hope to see a better version of myself appearing. While I am still having treatment I can see the end coming (no, not like that ;o) and I know now that I am going to reach that 5 year cancer free mark where people can say that they are cured and I will pass it and keep moving onward. I don’t know what is round the corner, none of us do, but I know that I am wining the battle in one of the toughest fights I will ever have and that makes today a very special day indeed.

Today has not been a good day.  Today has been the kind of day when I just want to throw all my toys out of the pram.  I am lying on a bed and a doctor is pushing needles in my hips bones and my spine and poking and prodding and asking if I am ok and I just want to say NO, no I am not ok.  I want to quit this.  If I was sick I would know, so lets stop all this other stuff.   I came so very, very close to saying enough is enough today.  While saying all this I do know that there are people out there that are so much worse off than I am and that I am so very lucky but it is uncomfortable and hurts and when I see the room that they do the procedures in there is a little bit of me that wants to run away and that is embarrassing to admit when you know you have to be grown-up about it.

I guess I was already a bit frustrated before today as I have had to deal with the changes that this illness brings.  Things like losing my jobs, having to keep and eye on my blood counts and coping with them when they are low or watching as my parents work on the house, for example, and not being able to help them like I used to.  Two years ago I had 4 jobs, did not have to worry about infections (had never heard the word neutropenia thankfully) and was helping  lift plasterboard on to the ceiling and walls of the house and now I have to tell my parents (neither of whom are fit themselves) I am sorry but I can’t help.  I try to do what I can but I should be doing more.  While saying all of that I do count my blessings.  I try to think of this as a time of change, that there is something new waiting out there for me and whether or not I can help my parents I am so lucky to be spending time with them and appreciate this as an adult so much more than I did as a child.  I have a roof over my head, food in the cupboards and I know that I am blessed with a great family and fantastic friends but some days are just that little bit harder than I would like them to be.  However tomorrow, as they say, is another day,,,,one with a few less needles thankfully.

Two posts in under a week, oooh I must be avoiding writing an essay again! Yes it is due on Thursday but that is not the point….well not the entire point.   So today I had one of these moments (lets call this post overshare) where having  decided I was going to put myself out there and try and meet someone (remember my bucket list/New Year resolutions) I was doing the usual just meeting talk, where are you from? what do you do? and I had to pause and say well actually at the moment I don’t do anything.  I then had to go on and explain why I am living the good life and use the L word.  Now while all my nearest and not so nearest know that I have ALL telling someone new that I have been sick (but am getting better) is not easy as even in my head it sounds a bit negative.  On the plus side this person did not run for the hills (yet) but even if they had I guess the more times I do this the easier it will be.  Anyway best get back to essay avoidance ….. P.S. I hope you all had a fantastic Easter xxx

It has been pointed out (thank you mother) that I have been rather quiet of late on here and that maybe I should let people know that I am still alive (well you know what I mean).  So here goes….  At the end of January I felt fantastic, ready to take on the world or at least go back to work, but then after my last round of Glasgow chemo I started feeling awful again.  There were some points where even sitting at the table was too much for me and I spent days just living on the sofa.  However thankfully that passed but I have never quite made it back to how I was feeling in January and that is annoying.  Fatigue is a funny thing, it is something more than being tired and it is something that I seem to be facing daily.  There are some days that are fantastic (and I know on these days I cram too much in) but many days I wake up more exhausted than when I went to bed.  I am so lucky however to have the friends and family that I have as feeling sorry for myself is not an option (again thank you mother).  I am also lucky that I have the birds and the bees (no comments please) as looking after them gives me something to do each day no matter how awful I feel.  I also know that no matter how bad I feel there are those that are worse off and I do thank God for each day that I have to annoy those closest to  me (if you have a gift use it, that is what I say ;o)

Today was a good day.  In fact today was a monumental day.  Today I had my first hair cut (and I don’t mean the kind that takes it all off).  The funny thing was that my hairdresser kept going on about how thick my hair is and I just kept thinking what it was like a few months ago.  Today I also had chemo and tomorrow I get more in my spine but that’s ok for in the last few weeks I have started to drive again (be warned) and now I have had a hair cut.   Each day I am getting stronger.  I have a long way to go yet but right now I feel positive, I am going to beat this thing and I am going to really LIVE.  I don’t know why I am getting this second chance when so many others, others with wives, husbands, children or grandchildren, haven’t, but I am and I will make the most of it (whatever “it” turns out to be).

This time last year I was in hospital with a blood clot.  What a difference a year makes.  Today I was able to go outside and enjoy the snow for a bit which was amazing.    I am so lucky because I know so many people have not made it this far.  Cancer is a horrible disease that robs not just the sufferer but their friends and family too.  I am so grateful to still be here and to be able to start a sentence with “this time last year…”  I am however postponing my “birthday” again as the tablets are doing a number on me and I would like to appreciate my birthday dinner.  The upside of this is that soon my younger sister will be older than me tee-hee.