Just me

Can’t sleep tonight (which is a change as that is all I seem capable of doing these days), so I thought I would let you know that yes I am actually in the land of the living (just!).  So many times in my past I have faced challenges which were hard (or I thought were hard)  but nothing, absolutely nothing like this.   Even just the energy taken to write this so far has my arms shaking which is so not like me.  There have been moments in the last week where I have not been sure I could get through the next minute never mind the next hour or day but I have, only because of the prayers and good wishes I know that are out there supporting me onward.  A transplant, I know now, is not something you can ever really prepare for as it would appear to be something that zaps every last drop out of you before even thinking of rebooting your system and I am so ready for that to start.  On the plus side the staff here are amazing, you could not get better, and the level of care is first rate and beyond.   For those of you who have been in contact and have not heard back from me, just let me say thank you now and I promise some time in the very near future I will be in contact but for now I am going to find something that does not involve my brain or my arms to pass the time.  Love always xxxx

 

 

Happy Birthday To Me

Fiona here, I have stolen Jades blog , ha ha that will teach her to leave the computer out.  Ok, so that is a lie, she has asked me to help her do it as she has chemo brain.  You can tell she is not firing on all cylinders, when her instructions were limited to” nothing rude.” So here goes

Jade had her transplant yesterday and therefore has a second birthday.  So I now technically have  a younger sister, mum and dad we need words.  She is doing well especially since mum and myself are here  to torture her.  Having done her sleeping beauty trick yesterday, she is now awake and functioning as best as she can. That being  said  she is still sitting around doing drugs, which is wrong.

When you really think about it, what this complete stranger has done for our family is out of this word, amazing.  We will never get to thank them, but I can thank everyone who tried to sign up, those who are now on the donor register and those who shared it.  You will always be in our families hearts.   Having this journey  to travel may not be fun, but we have it and will definitely find major laughs along the way.

I would also like to thank everyone of you that has sent positive words of encouragement, sent letters, followed her blog, prayed for us and those who have been able to visit her.  This has really kept her spirits up, when it all got too much.  It has also made it easier on my family, to know she always has someone to talk to, being that we are nearly spread for one end of the country to the other.  That is for noise control not because we don’t like each other.

At present she is on antifungal  drugs ( she did have the lurgy as a child lol), anti sickness and her blood sugars are all kinds of crazy, but all in all she is doing ok.  Unfortunately she has pet bugs in her line so she needs to have anti biotics. I have managed not to bring any germs up this time so no need to be vaccinated against her family.

Now you get to know the real Jade.  She is fleecing mum and myself out of a dog when she finally kicks this cancer in the bum ( not too rude ).  I think a mix would be good, so may be a bull dog crossed with shih Tzu, you can work out what that would be lol.  Who cares, she can have what she wants for this one time ever lol

So that is me for now and handing back the blog to Jade.

Love Fiona xxxxxxxxxx

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T -1

Who new eating as many ice-lollies in half an hour could be part of any medical treatment but it turns out that it is.  Today I was given a bag of heavy duty chemo and to try and preserve as much of the soft mucus tissue in your mouth and throat you have to eat ice-lollies.  I managed 5 – the max is 10.  Turns out that I am also starting to suffer from chemo brain as it took me about half an hour to remember the word cookbook and not menu when thinking I should invest in some good diabetic recipes.  See that the thing while I am still feeling mostly alright I am suffering from high temps, rigors, bugs in my line, rashes, allergic reaction and diabetes again.  On the plus side none of this is new to the team, and the team here are fabulous, so each new problem is investigated and treated well.  So today I am having more chemo and more chemo and more chemo, followed by antibiotics and antibiotics and antibiotics then they give antihistamine and that is good night from me as it just knocks me out.  Tomorrow I get my new cells and then from what I have been told the fun will really start but I am ok with that.   Over the last few days this has got me thinking and it is not because I think anything will really happen to me,  but because it might,  that I wanted to say that each and every one of you means so much to me and has enriched my life in some way, you have made my life’s journey more interesting and enjoyable and basically helped to make me the person who I am today (some of you might not say that is such a good thing ;o).  And in that respect I know I am not perfect and I want to take this opportunity to say sorry if I have ever hurt or wronged you in some way.  I hope that you can forgive me for I really did not mean to.  I also want to say thank you for the fun times, the laughs and the giggles, the nights of deep conversation, the meditations on God, the teaching about prayer and faith, the holding through the tears, the letting me in to your lives to do the same.  You are all amazing people. Just remember (and I know you will have heard it before) life is short.  Don’t put off today something that you should be doing, something that will make you happy, we don’t get do-overs in this life just one chance to make the right choices so make yours count.  Anyway here comes the antihistamine so it is time for my afternoon nap.  Love you all xxx

 

icelolly

Ready, set, here we go……..

This morning I woke up in the QEUH for the first time ready to start the next step in my journey.  Yesterday was day -8 and today is -7.  At day 0 I receive my new cells from some amazing stranger out there who has never met me yet is willing to try to save my life.  In a world full of horrid news about awful people and situations there are still wonderful, wonderful people out there doing good, kind and caring deeds just because they can and we should never forget that.

So this morning I had another bone marrow biopsy which is always fun, fun, fun and then my first dose of chemo.  The amount of tablets they have me on is fairly substantial, with these being the ones I get before breakfast  Image preview

 

So this next wee while is going to be a bit rocky but at least I know what the plan is and with God’s help and your continued good wishes I hope to be out of here in no time!

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

You are the best.

I just want to start this post by saying a big thank you for all the Christmas and birthday cards, messages etc.  I have no idea what I have done to deserve such amazing friends but I am truly grateful.  I also want to apologies if I have not answered a message or sent a thank you card yet but this leads me to the second part of the reason for this post…..  When I started this blog I wanted to give a true description of what it feels like to be dealing with this illness and I have come to discover that it is far from the negative path that I thought it would be as there have been plenty of moment of humour and light during this journey.   However at the moment I appear to be really struggling to find these moments.  I don’t know if it is just everything suddenly catching up on me, my transplant looming on the horizon then being postponed,  or just because I am a bit run down but this last month or so has been such hard work.  I am struggling really hard with exhaustion at the moment, the kind that no sleep seems to sort, and my energy levels are low.  I was told last week that they have a possible new donor and have set the hospital intake date for the 4th but I did not manage to feel anything, either excitement or fear, about that and maybe that is a good thing – who knows?  I am however worried that if I feel this tired now how am I going to feel during and after the transplant?????  Anyway no matter how I am feeling it is onward and upward, I have to get my head in the game for the 4th.  I am in the middle of all my tests at the moment and my line goes back in on Wednesday so no more trips North after that.  However I just want to say thanks again, you are a fantastic bunch of people and I really do appreciate how lucky I am to know you xxxx

December 1 – Jade 0

December, is normally my favourite  month of the year.  I love Christmas – all the hope and promise that it brings.  I love the story, the lights and the glitter, the trees and the decorations, I love New Year and being surrounded by friends, family and love.  This December however has really been trying to kick my ass.  In the last few weeks I know what it is like to be blue lit across Glasgow by ambulance, to have an infection that is resistant to antibiotics (not fun), I have had to have my line taken out and will have a new one put in on the 23rd.  I have had to have a tooth taken out before transplant in case it causes a problem and I missed my last two doses of chemo as well as my heart and lung tests due to being in hospital.   Just when I thought things were on the up (I managed to stay awake for a couple of hours straight ;o) the hospital phoned today to say that my donor had failed their medical (I do pray that they are ok), so my transplant is postponed until they find a new one and all we can do is hope and pray that I stay in remission.  So I think it is fair to say that December is really doing a number on me this year but this time next week will be Christmas and there is nothing that can stop me from enjoying my favourite day of the year (at least I hope there is not).  If however you are missing a card or a gift from me I can only apologies and promise that next year I will be more organized – but this year I just have to admit that December has got the better of me ;o)

And now for the good news!

So I am going to start this post by apologizing.  I am sorry if I have not replied to a message or email, if I owe you a thank you or have missed an important date or event in your life, you are important to me it is just the last few weeks have been very, very difficult.  Even having been through this before I did not realise it was possible to feel this tired, or sick or worried.  I have been spending some time considering what it means to be brave.  I have decided that being brave is about choosing to continue with an action, belief or idea etc even when the odds are against you and you actually have a way out.  Recently I have felt anything but brave.  I don’t have a choice about what is happening to me and as such I have just kind of buried my head in the sand, possibly so deep that I am beginning to see daylight again ;o)   I have been so busy trying to pretend that all is ok, even though I have been terrified that the treatment has not been working.  I have spent days praying to God asking Him to cure me but acknowledging that is not always the way things work out.  Then on Monday I had to go in for another bone marrow (oh they are just so much fun)  and I received the results on Friday.  Those were some of the longest days that I have had to face.  On Friday morning I woke up and stopped asking God to heal me and instead just prayed that His will be done and that I would have the strength to deal with the outcome.  It turns out that sometimes just handing it all over to God works, who knew ;o) and we did it – I am in remission.  The new drugs are working.  So for the time being I can stop making plans for the worst case scenario and try to start focusing on the here and now.  I still have 3 rounds of chemo to go and then I take the next step.  On the 31st of December I go in to the Queen Elizabeth to start my transplant (ok I know they could have picked a better date).  So I really just want to take this opportunity to say sorry again for being a lousy friend, to thank you for all you support and to ask you to continue on this journey with me as we move forward, move hospitals and move treatment plans.  Thanks xxxx

That sinking feeling.

So this has not been the easiest week in my life and thus I may have seemed a little bit quieter than usual.  On Monday I was to start a brand new treatment never used by the Beatson before, but there was a little bit of a legal hitch and I had to have a bone marrow before they would start treatment.  The bone marrow was carried out on Tuesday and on Wednesday I was told that the chemo is not working and the leukemia has increased.  This was very hard to take as I had been feeling so positive up to that point and it has taken me some to time to pull myself together and start to get to grips with this news.  They only way I can explain it is it is like being trapped in a sinking boat with sharks all around and only a tin can to bail you out – at no time are you willing or able to stop but the water just keeps getting higher.

On the plus side I did sneak home for the night so I could see the dentist as if I am going to have a transplant then my teeth have to be in good condition.  It was great to be home and so hard to come back but if the docs knew I was not in Glasgow they may have killed me themselves.  It is so funny to be planning for the future and worrying that you may not have one.   I want to live, become a minister, get my masters, fall in love and dance in the kitchen (thanks Tom Paxton), make it to Christmas, have that party I promise we will have when I am better, get a dog, watch how your lives turn out, travel the world, have another birthday, be there with my family and watch Rory, Cameron and Louise live their lives, spend more time, more time, more time doing all these things and so much more.  So this week I am back to plan A – beat leukemia and to do that I have had to dust myself down and start living RIGHT NOW.  So I am sorry I have been quiet but I am back now and while this new treatment I have started has a ‘this may kill you’ warning written all over it, it is my best hope (faith aside) and so long as there is hope there is life and right now that works for me.

Oh what a day!!!!

So I have no idea how to explain today, except that it did not involve me passing out in a restaurant in my lunch plate like yesterday (got to keep my mum on her toes ;o)  Today I had a meeting with the transplant unit and to say it was terrifying is an understatement. In fact the doctor has folded up my consent form and told me to read it only before I go back in.  So basically they sat with me today and gave me a large list of the things that can go wrong, I think death probably being the worst but at this point I am not sure.  On the plus side my mother was with me and she can only see the positive and for that I am 90% grateful and 10% annoyed.  However before I go for the next step in this fun journey, I have to get in to remission, so come Monday I am back in hospital and hooked up to the drip again 24/7.  To say I can’t wait would be a huge lie but if I am to make it to terrifying transplant (although if you are reading this mother I mean fantastic opportunity transplant :o) then needs must and all that.  I know that positive thought makes all the difference and tomorrow I will be Miss Positive Pants again but tonight I am just a little bit wobbly.

Told you this one would be happier :o)

So I have not written here for a while and the main reason for this has simply been how awful I have been feeling.  This has partly been due to the maintenance chemo I have been on but also because I have been dealing with a lot of changes and I guess some major disappointments.  Today however I, well I don’t exactly feel great, but I feel better than I have for a long time.  Firstly that is because I now have a flat to which I can escape when out of hospital, secondly I have been off maintenance chemo for 4 days and that means that I don’t feel like death warmed up (pardon the pun ;o) well not quite so much, and thirdly I just got to pee in a toilet like a real person for the first time since Monday and you have no idea how good that makes a person feel.  You see having chemo is not just about the getting but also about the getting rid of and thus I have been hooked up to a drip for 24 hours a day having the chemo they put in me flushed back out and in order to do that they have to keep an eye on the levels of liquid that you have inside you as what goes in – what comes out = water tablets (or not).  Now I know why maths is so important in school.

The more I deal with this disease the more I realise that 80% of the time just involves me sitting or lying down doing nothing but fighting boredom and nausea and the rest of the time involves accepting that any dignity I had, and I must have had some, has flown right out the window, but as that has gone out a better (some would maybe say more twisted) sense of humour and understanding of what is important in life has come right back in.  I know now that it really is your friends and family that count.  Those people that stand with you and fight alongside you, that make you soup, that clean your flat, that take you out in their car, that talk to you by text, email or phone, that travel for hours just to spend time with you, that whisper in your ear ‘you’ve got this’ when everything around you is telling you to give up.  Those people who are there in whatever way saying ‘how can I help? – what do you need?’ those are the people that make life worth the living and those are the people that I am fighting for everyday – that and I have to help keep the people who make the pee pots in jobs.  So to each and everyone of you I say thank you for helping me find the strength to get through this and  to inform you that you are the reason I have just spent 4 days peeing in to cardboard containers (and I bet that just made your night ;o)

Love you and goodnight xxxx