This is just a quick post to say sorry if you have been in contact with me over the last few weeks and I have not returned your message be it facebook, email, text etc.  As part of the trial there is a drug that they give you which needs steroids along side it to work.  The steroids helped to trigger diabetes which has caused my eyesight to fail.  I am hoping that it improves in the next few weeks but until then I am trying to rest my eyes as much as possible.  In order to write this I had to use large font and even then everything was blurry  so text messages are a no go.  I keep saying that the chemo is not the worst thing it is all the rest of it that is the problem.

Today I felt a bit like a prisoner who was having there contraband forcibly removed.  Ok, maybe not quite that but the hospital stole my salad. My smoked mackerel salad became smoked mackerel -hmmmmm it is just not the same.  Why you may ask how could anyone be so cruel, well it was just to stop me getting sicker. You see this week I came back down for chemo on Tuesday and on Wednesday when I went in for the next round I was kept in.  Now this would not have been so bad if I had been prepared, but I am never sick (well ok maybe a bit of an understatement), so I had nothing with me.  Turns out I had all the ics I was neutropenic, anaemic, diabetic (thank you steroids)  and infected (ok I know it is not an ic but…..)  I had some infection that spiked a temp and chemo was cancelled and up to a ward I went.  Sadly now instead of going home tomorrow I am in for the weekend.  On the plus side my dear friend Rhona dropped off my things the next day as just one night in a hospital gown, no soap or toothbrush was enough for me to cope with and probably all the NHS staff.  So her I stay until my counts come up but I have had 3 units of blood so that has cured the anaemia yippee, with amount of antibiotics I am having pumped in the infection should be gone and the blood sugars seem to be under control.  I guess three out of four ain’t bad.

Ok so it has been a while since I have written here and that is basically because I have been exhausted.  On Sunday I was even unable to make dad’s fathers day dinner and my poor mother was left with that task.  On top of that on Friday when I came up the road from a doctors appointment my mum, dad and Louise spent over 7 hours traveling around the country, stuck in accidents and behind windmill convoys just because of me.  They have spent months ferrying me around and dealing with the fallout of this illness.  Even my 3 year old niece is missing me and wanting me better so I can come and visit.  While chemo may not be fun, it is not me. but the rest of the family that really have to cope with this illness.  I may have the cancer but I just have to turn up for the treatment while they are left with all the rest.  Over the months that I have had this I have seen my dad age and heard how my mother has worried about how she would cope if I died. .  While I sit in the waiting room I hear similar stories being repeated again and again.  Family members having to take time of work to look after sick relatives, worry and stress causing them to become sick themselves, but through it all there is a strength and a positiveness that would be hard to find anywhere else.  While cancer may be trying to break an individual it finds it very hard to break a family unit and tonight I just want to say a huge THANK YOU to my family because while I may be putting them through hell I could not do this without them (both those up North and those down South) they are amazing and I love them.

The world is full of amazing and wonderful people.  Today a friend of mind drove for 150 miles just so that my car could get an m.o.t. and also to take me to the bus in Fort William because the road was closed in Skye and the bus I had to get was cancelled – so thank you Mr Gilbert you are fantastic.  While then waiting on the connecting bus to the hospital I managed to drop my suitcase and before I knew it some gentleman had picked it up for me.  Now I could have done it but he was there before I could move telling me to “look after myself”.  There are days when you just believe again in the goodness of people.

So on Wednesday I had my portacath inserted as they could no longer use any picc lines.  Sadly when I went to the hospital today it did not work but fingers crossed that it is only due to swelling around the tubing and that it will work like it should next week.

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Tomorrow I have to go for another round of spinal chemo and to have my bloods checked.  Now the pharmacist seems to think that they will have dropped and he has told the nurses to stop  me doing a runner home but I am hoping that he is wrong and that I am able to flee the coop without any issue tomorrow – well that would be after a needle is rammed in my spine oh the joy.  There are some days when I just know that I am so very lucky because if these are the worst of my problems then I am doing A OK.

 

The thing about receiving chemo is that for something that is so completely lifesaving, it is a totally “nothing” looking drug.  Sure it comes in many forms and colours but it really looks no different to the flushes or the anti-sickness tablets that they give us.  Also, apart from the hair loss, to look at me from the outside there is very little difference.  In fact the other night the Brat was debating whether I have cancer all.  There are moments when I really love that child and others when I would gladly offer her free to a “reasonably okish” home on ebay (any takers?).  I know that I have been very lucky with my treatment, I have only needed platelets once, only had a handful of infections and only actually been sick once from the chemo (God bless the anti-sickness medication that they use).  That said having chemo is not that much of a walk in the park.  Take last Tuesday for instance, with ALL I need to have chemo injected into my spine (to stop the leukaemia finding what little is left of my brain) but the doctors were struggling to find the space between the bone.  While a local anaesthetic is used, each time that the syringe found my spine was agony and there were a few times when I wanted to say enough was enough.  However, at no time have ever said that and I am not going to start now but I was never so glad as when they decided to give up and try again tomorrow.   The chemo is also causing me to be exhausted in a way that I never imagined.  It is a completely physical and mental tiredness with even my joints and muscles getting in on the action and it is one that no amount of sleep seems to totally cure.   I know that there are things I should be doing, people I should be talking to but there are some nights even making dinner is too hard and I have to quit so everything is kind of being left on the backburner at the moment.  Then there are the bigger things that chemo has taken away from me.  I always wanted a family but just never met the right person at the right time and always thought I would have time but sadly since I have started chemo my periods have stopped and I am getting hot flushes (which are just so much fun). There are days when knowing that children are no longer an option for me that can be quite brutal but then I look at what I have and know that I am so very, very lucky (ok so I will keep the Brat).  I have amazing family and friends, and while having them in my life will never let me know what it is like to hold my own child in my arms for the first time, they do let me know what it is like to be loved and to love. And finally tonight while I am on the evils of chemo this wonderful, life-saving drug has done something almost unforgivable.  It has changed how things taste.  It does this because it can affect the soft tissue including the taste buds and this means that in my times of self-pity I can’t even turn to chocolate for comfort.  While most foods just taste of nothing at the moment (thus the almost killing mum and Louise with chilli) sweet foods taste salty and therefore my strongest supporter has abandoned me.  Oh well as the weight falls off me Louise will probably decided that I am visiting a health spa not the hospital and she will be back on ebay before you know it.

Talking about cancer has been relatively easy after the initial shock.  The day I was diagnosed all I managed to say so a close friend was “hi, it’s Jade. I have leukaemia” So ok maybe words did not come easily that day but thankfully I said enough to let her come to me.  These first few days are now pretty much a blur but that is ok because I am here now and still fighting and that is enough for me now.   Speaking about my mental health issues however has never been easy.  I still hate doing it because I think that people will start to judge me for being sick in a way that they don’t judge me for having cancer.  For years now I have let poor mental health ruin my life but I am no longer willing to do that.  For the last few weeks my anxiety levels have slowly been creeping up and for those of you who have never suffered from anxiety it is hard to explain what that means.  Anxiety is not always a rational fear and eventually the fear of the anxiety itself can trigger a panic attack.  When I first started having panic attacks I had no idea what was happening I was terrified and thought I was either going mad or going to die but a great friend explained to me what was happening and sat with me during the worst of them and because of him I am still here now.  So why am I writing about his now?  Firstly I know so many people who suffer from this and other such illnesses,  but who are too scared to talk about them because of the stigma attached to having a mental illness, and if me being honest about being sick can help just one person then it is worth it.  Secondly today I started taking 10 steroids a day as part of my treatment.  These steroids can trigger mania as well as depression so if you are a friend who prays please pray that I will be fine and if you are a friend who sends good wishes or positive thoughts please can you do so now as the last thing I need now is for my manic depression to rear its ugly head.  If you are someone who finds this topic hard remember you are not the only one who does, even I find writing about it difficult but if we always run away from the hard stuff…. well the cancer would have beaten me by now and I sure ain’t letting that win.

I am back down to Glasgow tomorrow.  Now one would be lead to believe from that statement that it has been a while since I was there, but no it has only been since Friday.  Friday when I went down and was checked on to the ward only to be sent home again without my new line being put in.  So tomorrow we have to play that fun game called “find a vein” and they have promised that they will put a new line in this week.  However I have had to remind them that I live 5 hours away from the hospital so it is not like I can just pop in on a whim.  I am guessing that I will be back home this week without a line in and I think I may be ok with that.  There is something about having a line in that means you are sick but I can almost convince myself I am fine when there is no plastic tubing in me.  That said I know that having the portacath in place will make life so much easier and I will just be glad to have the procedure out of the way.

It has now been 2 weeks since my last chemo and the other night my hair decided that enough was enough and it has started to fall out again.  Sexy is not a word I would use to describe myself just now (or ever now that I come to think about it), therefore today I finally bit the bullet and had the remainder of it cut off, so I am now hairless again. While the look may be somewhat drastic it does mean that my mother is not longer laughing at me (quite so much) and that has to be worth it in the long run. My mother believes that if she is too nice to me I may worry that I am actually sick so as long as she treats me the same as normal then there is nothing to worry about.  I can tell you therefore, by that thinking, there is NOTHING to worry about.

 

My computer has been sick for 2 weeks now and will be in its own hospital until the weekend when I hope to collect it fully recovered.  I, at the moment, am home from hospital and am enjoying (although sadly avoiding) the sunshine.  Chemo and sunshine don’t go so most of the day is spent in the shade watching as everyone else plays in the sun. On the plus side I normally burn as soon as the sun comes out so this shade living has to be good for me. 

So picc number 5 never worked and was taken out last Friday.  They are not able to put in any more lines as my veins are shot and as such have decided to put in a portacath but they are not sure if they can do it this week or not.

This week I also realised that I have to work at being a nicer person. The chemo and travel etc are taking there toll on me a bit and I found myself becoming grumpy and snappy with everyone close to me. Here I am going back to church and trying hard to be a better person and at home I am becoming someone I don’t like so now I have to get a better grip on myself and remember being sick is not an excuse for being awful to live with. 

On a funnier note I almost killed my family this week. I made garlic and chilli chicken, but the chemo has destroyed my taste buds, so while I happily ate my dinner the others turned a very strange colour  and started gasping for water. Maybe I don’t have to be nicer as if I cook like that again they may not survive!

So after all my moaning I did come down, I almost missed the bus but that was by mistake and not a deliberate ploy.   Today I had picc number 5 put in but it is choosing not to work so it is in my left arm and I have a cannula in my right hand.  Those of us who live in this country are so lucky and sometimes I think we (I) forget this.  Here I am getting top class medical care, care without which I would be dead, and we do so without having to deal with an impossible to pay bill at the end.  Every doctor and nurse I have met has done an amazing job.  One sat for almost an hour trying to get my picc to work and did so with more humour and good grace than I think I would have mustered (although she is glad to be off tomorrow).  I meet people every day, who are on this journey with me, and we are all so grateful for the amazing service provided.  We know we are the lucky ones although sometimes, like this weekend, it is hard to remember this.