Has anyone ever had to be inoculated against their own family before?  Well I had that joy this week.  After finally getting out of hospital on Wednesday morning and coming home, Rory my 3 year old niece decided to get chickenpox on Thursday.  This meant that on Friday I had to go to the doctors and have 4 injections (2 of which just had to go in my bum) and am now having to take 5 horse tablets a day.  While this may not be much fun being home and spending time with my family is.  Sadly Fiona and co left today but it was still great to spend some time with them.

So this is me home until Tuesday when I am back in for another round of chemo.  While the chemo itself is no fun, it is not too awful either.  Being stuck on a drip for a week however is no laugh.  I am unable to move my right arm much, as it stops the drip and sets the alarm off, so basically I have to lie in bed and not move.  Top this off with the internet not working and you can imaging how much fun that was.  This time I hope to be in a different bed (one with wifi signal) and thus will be able to speak to the outside world while I am incarcerated on the inside.

So I am back in hospital and have a huge problem – what you may ask?  Well my internet is hardly working, so Netflix is not happy, and thus neither am I.  Also the machine that is putting my chemo in (for the next 23 hours) is working for about two minutes before it decides that there is a problem and starts beeping its little head off. Add to that I have to pee in shells all the time and leave them in the bathroom for the nurses to take away (the bathroom is shared with three others) and you might understand just how pants this stay in hospital is.  Yesterday I had another bone marrow test and a new picc line was put in which left me feeling a bit battered and bruised so all in all I am not feeling my best. 

On the plus side the people in my ward are fantastic, as are the staff, and that makes everything easier.  Also one of my good friends is raising money for the Beatson (https://www.justgiving.com/Jay-Court2?utm_source=Facebook) so if you have any pennies spare please think of giving them to Jay, and thus the Beatson, and help in this fight against cancer.

So it has been a very long time since I have written here but I am back.  I have been home now for 2 weeks (minus two days spent traveling up and down to Glasgow for bloods, chest x-ray and antibiotics – via Oban as the roads were closed due to the weather).  The plan was for me to be home for one week but after getting sick my next lot of chemo was postponed until – well maybe tomorrow.  I have to phone tomorrow at 8.30am and see if a bed is available and if it is then I have to get the 9.15am bus down the road.  Thanks to getting the chest infection I have been shattered almost all of the time that I have been home.  However I did manage to go out for a walk one day but almost killed myself by walking too far.  I guess what I have learnt since I have been home is to take things  slowly and rest when I need as if I don’t I am wiped for the entire day.  While exhaustion and a chest infection have not been my high points of being home catching up with all the people that I have not seen for months has been brilliant.  My friend Alison took me around to visit some people last weekend which was fantastic and others have been popping in over the last couple of weeks.  Now however it is time for me to go pack (I have been avoiding doing it all day).  There is a part of me that really does not want to go but I know that I have to.  Lets just hope that I don’t have to go via Oban again.

 

I have spent the last week feeling ill  – thank you Mr Chemo.  I also still have a blood clot (somewhere) but as of today I am trying to get it together and start acting like I am not ill.  As of this point I still have cards and gifts to open, from my birthday, but I want to open them when I am feeling ok and not at this moment when I am feeling like death warmed up.  I have decided to move home on Sunday as the treatment is on a standstill yet again until the clot goes.  This means that Rhona and Alan can have their house back and I can stop living in their upstairs bedroom like some lunatic aunt from a Bronte novel.   However, I do this, in the knowledge that I can move back down (and resume lunatic aunt status) as and when I need to.  I have also spent the last week realising that I don’t want my life to go back to the way it was before.   I know that because of the liver problems the doctors don’t want to do the transplant and I am not sure what that means for me long terms as yet.  All I know is that I  really want to start living and enjoying my life.  Living with this clot and knowing that it could move (and possibly damage if not kill me) is making me very appreciative of the time that I have had and am still to have.  I want to spend more time with the people I care about doing the things that I enjoy.  I want to start working outdoors more and enjoying each day for what it brings.  This year I am going to learn how to garden (my mother is probably killing herself laughing about now) and I am going to finally make the jams, juices etc. I have been telling myself that I would do every year.  This year I am going to start “doing” and stop waiting.  We only get one go at this life thing and I have let so much of it slip away but not any more  Sure I know that there are still lots of days to come when I will feel ill, when even getting up and dressed will be an achievement, but that is ok because for every bad day I hope there will be numerous good days which I will grasp with both hands and enjoy.  None of us know what is around the corner.  If today was your last day are you living it the way you would want to?  Is there anything that you would change?  If there is then now is the time to change it, because honestly you might not get another shot, and for me that is a terrifying prospect.

Thank you for all the wonderful birthday wishes, and sorry I have not been in contact until now to say thanks, but I have been feeling very “blah.” I was sadly in hospital for my birthday, although my family came to visit, and made it so much better.  Also the staff here made a huge effort, and I had cake and gifts from them, which was really nice.  So the reason for feeling under the weather has been that I have had a pain in my neck and chest, which has meant sleep has been hard to find, add to that a swollen arm where my PICC line was means I have been having x-rays, ECG’s, CAT scans etc. and it turns out I have a clot in my left arm where my line was.  So today while the PICC line has been taken out I am not able to get out :o(  So here I sit, all packed and ready to go, but not able to go anywhere.  I am going to be shown how to give myself blood thinning injections and I just hope they do their job and the clot dissolves.   At the moment I must admit that I am not feeling my best (the injection in my spine yesterday also did not help), but I know that the only way from here is up and that has to be a good thing does it not?

So still in hospital.  I have been put on a diet of antibiotics, antifungal, and antiviral medication to complement my antisickness and anticancer drugs.  All I have to do just now is cross my fingers and hope they work until my neutrophils come back on line.  Let me tell you something, this is a very easy thing to do until someone coughs or sneezes next to you!  Having said that I do feel like rather a fraud sitting here taking up precious bed space.  As I have already said everyone else in my room is very sick, some of them terminally so, and here I am playing on my laptop. Yesterday, sadly, I had a front view seat on how they break the bad news to patients and let me tell you this if they ever ask me when my family are going to be visiting I am running for the hills as Denial is a destination I would much rather prefer to Bedside Bad News.  In saying this the human spirit is fantastic, and after listening to others stories, I for one can’t help but be amazed at how strong some people can be when faced with all that life can throw at them.  I listen to their tales and wonder how I would cope.  While I would like to think I would cope with grace and dignity, I do have my doubts (I know myself), however I also hope to never have to find out.  So lets pray that my anti’s do their job and do it well, and maybe then this time next week I will be back in the real world, as I believe (sadly) that someone else probably needs this bed space a bit more than me.

 

So back in hospital again,  neutrophils are down to 0.1 and I am needing more blood AGAIN.  Please, please donate if you can – it is so important for so many people.  Being back in hospital is always interesting with new staff and new roommates to get to know  This time the people I am in with are really quite ill but they were short of beds so here I am.  Today I had a big decision to make about whether I was going to start my course now or in six months time.  In the end I decided 6 months would be the best idea as I have no energy at the moment and still don’t know what the next step of my treatment involves.  While I have never been really “sick” since that first infection I am always completely exhausted in a way that I have never been before.  It is hard to explain how bone deep it goes  and how sometimes even replying to a message or making a phone call takes a Herculean amount of effort.  There are some days even getting to the hospital is a killer and I am not daft enough to think I can then sit and study afterwards.  So I have a six month reprieve and by then I hope to be on my  feet again, fully fit and ready to go and if not?  Well we will cross that bridge when we get to it.

New Year -new me?  Not quite.

New Year – new appreciation ?  Yes

This time last year my life was very different from what it is just now.  For starters I was working (right now) in a job that I love and I had also just brought in the New Year with my family.  While I had a good time I must admit that I had definitely not appreciated all of that as much as I should have and that is hard for me to have to acknowledge.  This year I was in bed for the bells having spent 30+ shitty hours in hospital.  However this year while not participating in the festivities I do appreciate everything slightly more.  I appreciate my family and the friends that I have in my life (both the old and the new) you are all amazing and inspire me to be a better person.  There is something quite hard and sad about going for all these appointments and treatments by myself but I know that I am never alone and at any point I can pick up the phone or post a message and there will be someone there for me.  I also appreciate that maybe I am learning something when I go to these appointments by myself, as I then talk to other people and hear their stories and realise that for all the darkness we hear about each day, there is an awful lot of light and love in the world.  That love and light includes the perfect strangers who donate blood so that I, and all the other patients, can stay alive and face another day.  Yesterday I had four units of blood given to me and at no point could I take for granted the gift that some perfectly random stranger had given me.  That light also includes the work that all the hospital staff do, a more dedicated team you could not find (even the ones that make me cry).  This year I am not going to make my usual resolutions but I am going to promise myself to live in the moment, to love more, to laugh more, to be kinder, to be a nicer version of myself.  Basically at the start of this year, 2016,  I may have cancer but I am still here, still fighting, still loved and cared for, caring and loving and that means more to me than I ever truly understood or appreciated before.  So while I am not saying things are going to be easy, I am going to face the challenges head on, revel in the good bits, fight through the bad and hopefully when I look back at my life this time next year I will be cancer free and happy with what I see.

 

 

So here we are in the last few hours of 2015 and while everyone else is being rather positive I must admit that for the first time since I was diagnosed with ALL I cried.  I cried because the docs (all three of them – they like to work in herds) came in to tell me that I can’t go home to be with my family for New Year.  I cried because the room I am in has no signal and I could not even phone them and tell them.  I cried because I am just bloody sick and tired.  I cried because I know that next week I will be back in here getting more drugs and blood pumped into me to fight a disease that is robbing me of so much.  I cried in front of a bunch of strangers (nurses, doctors and the other patients) and there was nothing I could do about it (once more my dignity flew out the window).  Yes I can/have been strong and positive but I guess even I have my limits.  I then look at the family across the way, who are waiting for the inevitable, and feel so stupid for being upset but still can’t stop the tears.  If asked, this time last year, what the future would hold I would never once have imagined that I would be here now.  While I may be feeling sorry for myself today I also realise how blessed I am.  This year I discovered just how amazing the people in my life are; both old friends and new additions.  I also truly realised just what an amazing family I have and how lucky I am to have all of these people in my life.  Things may not be how I would want them right now but they could be a lot worse and I must remember that.  I am loved and am so blessed by this knowledge and I want to take this time to say thank you for all the kind messages, prayers and support I have received this year without them and all you/these amazing people in my life there would have been a lot more tears and a lot less laughter, so THANK YOU you are amazing.

So I made it home for Christmas which was fantastic. Three months since I had been there but I had 3 wonderful days at home.  I am in hospital every day now for treatment and it is pretty hard going and that is why I have not being updating as much, but today they have caught me and kept me in so I have plenty of time on my hands.  I am waiting for a blood transfusion and am to be given antibiotics as my neutrophils are low but I still plan to be on the three o’clock bus tomorrow.  My entire family is up north so I feel the need to go and annoy them and thus will be on that bus come hell or high (or even flood) water.  I somehow don’t think I will be out dancing tomorrow night but you never know these bloods might give me all the energy I need  😋