The Cancer Diaries

Today I have felt my inner toddler rising to the surface.  Everything in me is screaming to stay home where I feel happy and healthy but I know that I have to go down and start another round of treatment.  It is kind of like fighting against our natural flight or fight instinct as I know that going down and having treatment means that I will start feeling sick again.  Every night this week I have been out for a walk at sunset and it makes me realise how lucky I am to still be here but if I want to beat this disease then I must keep fighting it and this means sticking more poison in my system and then dealing with the side effects.  So now I am off to pack my case, find my bus ticket and stat acting my age even if I think my inner toddler has a point.

Back down to Glasgow on Sunday and I can’t say that I am looking forward to it.  I am enjoying being home and it has almost been one month without chemo and thus I am feeling much better (although balder) for it.  It is not the going down (as I have great friends in Glasgow) or even the chemo that is the problem but rather the after effects I hate but I guess it will all be worth it in the end.  Since I have been home I have caught up with friends, started going out for walks, planting for the spring and yesterday I sorted out the duck pond (and yes I could hear the doctors shouting at me in my head) which now has happy ducks in it.  I have also started to go back to church and am feeling much better within myself for doing so.  While I became a Christian at 16 I let my bipolar take control of many areas of my life and in doing so destroyed my relationship with God.  Now I am working on building that back up and I hope that the person I am becoming is a nicer, more well rounded version of the one I was before I got ALL.I am not proud of many of the choices I have made in life but I have been lucky enough to have been given a second chance and intend to use it to the best of my ability.  I am not sure what the future holds but I know that I am back on the right path and this time I intend to stay on it.

I realise that I have been very quiet on here for a while now. In fact since my last round of chemo I have been exhausted and not achieving much, then last week I had to go down to Glasgow for the day to receive chemo in my spine (that had been forgotten about the week before) and that journey almost broke me – I don’t think I have ever been quite so tired before.  Over the weekend however, I ended up with a temperature and have been living in Broadford Hospital (getting antibiotics) since then though tonight I must admit that I am feeling much better.  This is a fantastic hospital and while I will not be sad to see the back of it tomorrow, all being well, the staff here are fantastic and you could not get better anywhere else.  On Friday I am back down to Glasgow to see my consultant and will hopefully find out what my next treatment step involves but until them I am looking forward to getting out and getting home and sleeping in my own bed again – it is the little things  in life that you have to be most grateful for.

So yet another week is over.  This one has felt quite long as not only have I being getting chemo every day but on Monday picc line 3 stopped working and number 4 had to go in.  This is because my veins are giving up the ghost and add to that the fact  my liver is in a mood with me due to the chemo/antibiotic combination and you will maybe understand how glad I am that this week is over.  But this week has also taught me once again how lucky I am to have the friends that I have in my life, those that help me and listen to me and those that give me a swift kick when needed.  I also realise how lucky I am to still be here as yet another patient from my ward received the bad news and has since passed away.  I am not one of these people that asks “why me?” because why not me?  But I do thank God I am still here, I am one of the lucky ones and must never forget that.

So I am out of hospital again, yipee.  I am still on giant antibiotics but I hope that my chemo will start tomorrow as (re)planned.  I have a new mid-line in my left arm which I do hope stays in ok for the rest of my treatment (third time lucky and all that).   I am beginning to realise that the ALL is just something that hovers in the background but it is all the other issues that it brings, such as the infections, that are the real problems. So as I start a new round of chemo I thank God that I am still here and relatively healthy and I thank you for all your support, kind wishes and prayers. So while I can’t say that I am looking forward to tomorrow and my next round of treatment I am glad that we are still going in the right direction even if there is the odd little hiccup now and then.

This afternoon I am getting my first hair cut.  I am still in the hospital and thus am lucky enough to be able to use their hairdressing services. The Beatson is great for that and all the complementary services that are available.

For those of you at home that are coughing, sneezing etc (Louise) you will be glad to know that they have a name for our little problem and it is coronavirus which I am glad to hear is not a bad bug (although it obviously still needs a bit of training done with it).

So my next round of chemo has not started yet but hopefully will be beginning again on Monday.  Sadly this means I will miss mums birthday but like all recent events I will make up for it later and next year every special day from New Year on will be celebrated on the date and in the best way possible.

So I have not posted much on here in the last couple of weeks.  That has mostly been due to the fact that I was home and having a wonderful time not thinking about ALL.  I have been busy working out in the garden and even my bees came out to see me one day, which I thought was awfully brave.  I also went back to church which was nice and is something I intend to do more often now that I am getting home regularly.

Today however I am back down in Glasgow supposedly to start my next round of chemo as an outpatient but as the all of the best made plans go I am not going to be doing that.  Instead I am back on the ward (in my own room as I am being spoilt) having intravenous antibiotics to combat an infection.  This is very reminisce  of how I ended up here in the first place which is somewhat frustrating.  Hopefully however I will only be in for a couple of days and then on with my chemo.  Having been an  idiot and not called my doctor yesterday, as I did not think it merited it, I was forced to make the call today when I arrived in Glasgow.  I have to admit that, like everyone that is treating me, the staff here are fantastic and when I called the support line they could not have been any more helpful and as I have already had my first lot of antibiotics I am hoping to be on the mend soon after all I have gardening to do.

Community, what does that word mean to you?  For me it is more than a group of people living together in the same area, this week I was once more shown that it is about friendship, family, support and so much more.  This week my local community had a coffee morning to raise funds for my traveling expenses going back and forth to Glasgow for treatment.  In a world where you only have to open a newspaper or turn on the tv to hear the most negative stories this is such a wonderfully kind and generous thing for people to have done.  I am so lucky to be part of this community and am so grateful for their thoughtfulness and generosity.  There is so much I would like to say but I believe that thank you will have to suffice, so thank you to everyone that contributed to the coffee morning and thank you to those of you who keep me in your thoughts and prays.  I know I am blessed and I will always be grateful for your support.

Back out of hospital tomorrow I hope.  I have been hooked up to a drip 24 hours a day since 6am on Wednesday and now I only have two and a half hours to go until I am free from the dreaded machine.  I had chemo on Wed for 24 hours and then you have to wait till it leaves your system which took until 12.30pm today.  Fluids are put in constantly over that time amd I must admit I probably kept my room mates awake half the night with my trips to the bathroom so I bet they will be glad to see the back of me.  I am now getting a couple units of blood and some tablets (which can mess with my liver again oh joy), cream etc. for a skin infection that I appear to have developed and then freedom will be mine.  I must admit that I am so glad that this last part of my treatment is over.  I may not be the most active person in the world but I do like to be able to move around and I can’t do that when on the drip.  There is also the frustration of not being able to do anything to make the chemo clear faster and all I can do is wait for my body to get rid of it.  So the good news is that I am now off the chemo for 2 weeks.  I do not have to be back down again until the 14th when I start a different kind of chemo, one that means that I can move about more freely I hope.

Today there was room at the inn and thus I am back at the Beatson.  Tomorrow at 6am I start my next round of chemo.  6am … you would think they could start a little later.   Today has not been a great day and I found it very hard to motivate myself and phone to see if there was a bed.  Partly, I guess it is the fact that I have been fighting this hellish disease for 5 months now and at times it can feel at bit like treading water. Then there is the fact that I am finally getting home and the idea of leaving again is so hard.  Also I am exhausted which is causing my mood to dip slightly and then there is the feeling that I want my life to change but I am just not sure how.  I don’t want to go back to the way things were before, I want to start living my life doing something I enjoy and something worth worthwhile but my inner monologue keeps poohooing me and telling me that wont happen but maybe it is time to ignore the negatives and only listen to the positives?  So that is my moan for today.  Tomorrow I hope will be better and I promise no more complaining.  On the plus side I am in a different bed this time and maybe that means the internet will work better, who knows.