In the Dark of the Night

One of the worst times of day, I find, is when you lie in bed, wide awake in the dark of the night - not the snugly time just after you switch out the light to go to sleep - but the time around 4.00 to 5.00 when you have woken up again and can't get back to sleep.

Your thoughts run away with you - no matter what you start thinking about they rush around in a spiral and end up in exactly the place you don't want them to go. I am writing this at 5.03 on Saturday morning, because I stopped for a toilet break (i.e. I woke up and couldn't get back to sleep) around an hour ago.

 I lay in bed for half an hour and then got up with my head spinning, reaching that horrible place, full of dark thoughts - obviously, in my case, I was thinking of the humiliating defeat last week by Wales at Murrayfield (fortunately my main rugby companion has been on school holiday duty this week and I was spared the whole 'that was a dreadful match' conversation, particularly since he is English).

It was my birthday this week - in fact it was my birthday on Wednesday - they day I was at hospital for my treatment. I went to my GP on Tuesday for my regular blood test, then waited with baited breath to see if my blood count had raised from the week before. The call came through on Tuesday afternoon. The blood levels were back up and everything was good to go.

I turned up at the hospital and was plugged in. Every time the drip is changed, they check my name and date of birth - just in case I have forgotten it, I think (or maybe it is to check that no one has sneaked in, hit me over the head and swapped places with me to take my treatment. Hmmm. Must ask about that on Wednesday).

It didn't take long for all concerned to notice the similarity in dates and very sweetly, I was given a box of chocolates (probably from the stash of goodies received from other grateful patients, but I appreciated it none the less). After helping my self to oneof the orange truffles, I passed the box round the treatment area where I was. A little later I was helped with my chocolates by Clairee, The NinjaGeek when she gave up her own birthday afternoon (she was nineteen and I was forty four if anyone wants to know) to visit her poor old dad in hospital, again it was very much appreciated (so thank you Claire).

One of the differences between the Western and St Johns is that the latter is a much smaller unit they have space for around 5 or 7 patients at any one time. They have the same cancer types regularly, every week - Tuesday was bowel cancer day. That meant that when I went along every third Tuesday I would seem the same people every time. There were always people starting or finishing, and there were inevitable delays, but in general the people stayed the same. Also because everyone was being treated for the same thing, with roughly the same everyone knew how it felt and it was going.

On Ward 1 however, this is not the case. The ward itself is much larger and treats a much larger number of patients - roughly around 30 to 35 patients at any one time I would say. and everyone has a different type of cancer, and hence a different type of treatment. I am there all day and see people coming and going all the time. I have now picked a spot, strategically next to the toilet, where I can sit and watch everyone coming and going.

I have one other blog that I follow, from a friend in the south of England, writing from the point of view of a husband watching and helping his wife go through her treatment. Andy and Janine have an inspiring faith and Janine seems to face up to her treatment with unwavering faith in God and a strong sense of humour (possibly slightly dark at times, but well...)

I know that there are time when that faith in God will be shaken and the sense of humour slips (see the start of this post :) but I think I would like to say that both Andy and Janine have been a great inspiration to me.

(I also feel inadequate in the blog posting department, when every other day there is a new email in my mailbox anouncing a new post from Andy).

I do believe that God has me in the palm of his hand at all times - even the dark of the night, but I don't think that this comes across in this blog. To a certain extent this is a deliberate choice - I have chosen to concentrate on symptoms and treatments and miss out the reliance on God.
I know that God can heal supernaturally and sometimes chooses to do so, but I also know that he uses people he has put on the earth, such as the medical and nursing staff (both Christian and non-Christian alike)  who look after me, to fulfil his sovereign plans.

Enough of this night-time drivel - this has taken nearly an hour to write and it is almost time for breakfast telly to start.

God Bless

Graham

Sent Home in Disgrace

Part 1 - A Free Week
It is just over a week since I had my last round of chemo and it has pretty much taken me the whole week to recover form that bout. I was far more tired than I remember from the equivalent chemo cycles in 2008.

I don't know if I am romanticising the last round, or whether it actually is harder this time - probably some of each.

Again, the actual day in the hospital went smoothly, other than a very embarrassing need to go to the toilet every hour. I can't contain it at the best of times, but the main function of many of the drip solutions is to (re)hydrate me. The end result is that the liquids pour out of me almost as fast as they are pumped in to me. Glasses of water and cups of tea just make it all worse, but I have to say that being pampered like that is rather nice, and as for the foot massage (I know I have mentioned it before, but, you know.........)

The aftermath again proceeded much as advertised. The next day (last Thursday) was relatively straight forward, not too sick, but easily tired. Friday more sickly and more tired. Saturday, more more sickly and more more tired.

The other side effects were also present - particularly the constipation. Fortunately the lovely nurses gave me some nice medicine to make it go away. It took time, but eventually relief was on hand.

The week off fairly flew past - going to work every day is such a delight. The only problem is that it seems that I overdid it a bit.

Part 2 - Sent Home in Disgrace

Each visit to the chemo ward is preceded by a blood test. Yesterday I duly went to my GP for my blood test. The blood test checks a number of  exciting things, one of which is my White Blood Count (which is a measure of how good my immune system is).  The WBC count should be 3 or more. Before the start of the treatment it was 7.2. before the second treatment it was 3.2.

Yesterday, even after two weeks without any treatment, it was measured below the Magic 3 - (2.6, I think), so when the ward called me for the regular day-before check-up they warned my that I may not receive the treatment today. I arrived for my appointment today and was taken in to the ward and stuck with my needle.

The nurses took another blood sample to repeat the tests. The sample was whisked of to be tested again and in the mean time I was given the first drip - a saline solution for hydration. just as that finished, the news came through and my WBC count seems to have dropped further - although I don't know what the actual value was. Maybe, just maybe I should try to take it a bit easier.

As a result I was sent home in disgrace, my head in my hand; shame filled my every pore. I have an extra week off and everything slips by a week.

I have to admit, I just went home and bummed around for the rest of the day - I decided that if I was too ill for chemo, then I probably deserved a day off work - maybe that was wrong, but there you go.

I still get to go back on my birthday - no more news on the campaign for a second birthday - the kids are behind it (they think they will get more birthday cake) but Helen doesn't see the need. I will press on with this though. If you want to add your support to this worthy cause, please contact me. I may have to start a petition on the Number 10 website - I am sure that David Cameron would be very interested in this.

Enough already - my daughter wants to see what drivel I have written this time, so I will finish here. I am not expecting much in the way of symptoms this week, what with the lack of nasty chemicals and stuff, so there may be another longer gap - unless blinding inspiration strikes.

best wishes

Graham

P.S. congratulations to Becky, who has just been awarded a scholarship to study in the US next year. :)

This time it’s personal

So I am around half way through the first week of the first cycle of three (or possibly four) of chemo, with the possibility of radio therapy to follow – if you say it quickly, it doesn't sound so bad….

I have had a look back over the most recent set of posts and realised that I haven’t mentioned the drugs I am privileged enough to be receiving (I mean that, all you Americans – the NHS is great).

I am receiving a GemCis combination – Gemcitabine and Cisplatin. For those of you with long memories, (or the facility to scroll down the page) you will notice the similarity of drugs to last time – Capecitabine and Oxaliplatin, and with that similarity in names you will see a similarity in symptoms and side effects.

Both of these are administered as a drip. This means that I have a single day treatment at the Edinburgh Cancer Centre at the Western General. It is an all-day stint, starting in the morning. It starts with a bag of saline solution (1 hour) followed by some steroids. This is closely followed by the first of the Chemo drugs – Gemcitabine. by this time i have had three cups of tea and am ready to go to the toilet – which I am doing more frequently anyway – so I end up taking my pump and drugs for a walk to the toilet with me.

After this I have another saline (or glucose – can’t remember) drip, which takes 2 hours. I have no idea why that one takes so long. After that there is the second chemo drug – Cisplatin. The two chemo drugs take about 15 minutes each and there is about 5 hours of saline/glucose/flushing going on around about them – but someone brings you tea and biscuits so it isn’t all bad.

I have the same anti-sickness drugs and (more) steroids as last time, for three days, to take the edge off the chemo.

Now, of course, I remember that the steroids do really strange things to my sleeping – wide away at 4 am on Thursday morning, and when I do get to sleep, the dreams can be weird and wonderful – maybe just weird though. After that the drugs do kind of take control and it isn’t so bad, although I don’t remember being so tired last time so quickly.

I finished the first round of chemo/steroids/anti-sickness yesterday – and yesterday evening was not much fun. Neither was today at church. The meeting hall was very warm and I kept getting worried glances from Katie (on my left) and Helen (on my right) about the colour I was going – they were obviously worried about my catching an infection, so I can’t complain too much though.

My sense of taste has also been affected. I constantly have a yeuck taste in my mouth and can only taste stronger food – I had fruit salad for breakfast and could only taste the pineapple, although apparently grapefruit also tastes normal. Orange juice on the other hand is just foul. Surprisingly, my sense of smell has been unaffected, Anyone who drives through or lives close to the west end of Edinburgh will not forget the malt smell from the brewery – that was just as fragrant as ever today.

So it is a waiting game again until Wednesday, when I get to go through it all again. I will see how I get on tomorrow at work (yes I am still trying to work, at least part time anyway).

I have just realised that I get to have chemo on my birthday this year (16th of February, if you want to send a presie) – maybe if I play my cards right I will get a second birthday, like the Queen or Paddington, later on in the year – maybe in April, since no-one else in the family has a birthday that month.

 

Enough – off to watch the telly now.

Gob bless

Graham

p.s. oh yes, I have been constipated too (sorry, just had to throw that in)

p.p.s Happy 18th birthday to Sean

Just a quickie

I found this in the BBC news website, about the build up of computing facilities for the 2012 Olympics – thats even more computers than the Love household!

Virtual London 2012 Olympics off starting block

The big day

Time passes and eventually we get to where we are going - and this is where I have been heading recently. Today I have arrived at Ward 1 of the Western General for my new chemo treatment.

Yesterday I was at a different part of the hospital - Nuclear Medicine - for a kidney function test. As tests go, it was pretty boring. I arrived (half an hour late, because of the traffic) and had a canula put in. Then I was injected with radioactive Technetium (despite what I said on facebook, it was Technetium). After that I was told to go away and come back in an hour. I was left to wander the wards of the hospital and do anything I wanted, so long as I returned after the required time.

Sure enough, I turned up after an hour. They took a siringe-full of blood and sent me away for another hour. This was repeated twice more before I was sent home. My pee was luminous for twenty four hours (only joking) and that was it - pretty boring really

Today I have returned, this time to the Chemo ward. I was inducted, given my bracelet and enough paperwork to destroy a small woodland copse. They contain all sorts of dire warnings about side effects - more of which in future posts, I am sure.

With the wonder of modern technology, I am connected to the internet, typing this as I am drip-fed (quick glance to check the spelling) Gemcitabine.

My alarm has just gone off, so it must be time for a new drug - Cisplatin, I think. So far, so good though.

They have introduced a new service here in Ward 1- I have just had a foot massage, as I sit here - very relaxing indeed.

The morning in here seemed to be fairly quiet, although I heard other patients and staff say it was very quiet. The afternoon has picked up. this morning there was one other patient, but there are four of us here now and this is one area of one treatment site (there are four here).

I have another few hours to go, so I think I will stop just now, so that I can save some stuff for next time.

Starting over again

The more eagle-eyed readers will undoubtable noticed that the name of this blog has changed. I have been feeling inadequate in the name department after reading the blog of my friend - see below.

ChemoBoy is my alter-ego, and I have the teeshirt to prove it. I might get one of the children to take a photo of me in my superhero outfit.

Now that we have the important stuff out of the way, an update. We had our appointment with the Oncologist on 30th December (and a holiday at Centre Parcs, too, which is the reason for the delay). The result of this is that I have an appointment to start my Chemo on 19th of January.

Again however, we were back to square one with the choices. After everything seemed to be cut and dried, we were given the same choices as before.


There are two definitive treatments for Bladder cancer, according to the Oncologist. They are Radiotherapy and Cistectomy (surgical removal of the bladder). Chemotherapy can be given before either of these options to improve the outcome at the other end.


After a discussion of the options I have chosen to go for the Chemo, hence the appointment next week.


The treatment this time consists of three cycles, and this time it will take place at Ward One at the Western General in Edinburgh. I am sure that Ward One will be familiar to most cancer sufferers in this part of the world, however I managed to avoid it last time, so this will be a new experience for me.


Treatment will take place once a week (a Wednesday) on Week One and Two, with Week Three off. There will be three cycles (of three weeks each) followed by a biopsy and a possible fourth cycle if the tumour is responding. This will be followed by Radiotherapy.

If the tumour is not responding after the biopsy then the prefered option of the surgeons will be to remove the entire bladder.


I am very anxious to avoid this option, if at all possible.


I have been in contact with a friend from my previous life, Janine. She has just been diagnosed with her second cancer - a lump in her neck. First time round she had to have her leg amputated, so I guess she knows what we are going through with the whole bladder removal thing.  She had here five year all clear just before discovering this lump. Click here to follow her husbands blog - Musings and Leanings.


I will post again as the chemo progresses.

On a happier note, I am sitting with my favourite Katie, watching The Two Towers and eating Cadbery Clusters :)

How could life be better? 

A blast from the past

Wow, what's this - I thought he was dead or something.



Well no actually I have been living quietly, recovering from Chemo and going to work and getting on with life, content in the knowlege that I was a surviver and had beaten the Cancer.



Very good, you say. So why are you writing this then?



Well...........



It's back.



Except it is not the same - and therein lies a tale, which will no doubt follow in future posts, but essentially I have bladder cancer. After a (new) series of tests, biopsies and consultants I have completely unrelated primary bladder cancer.

As I write this I am waiting for an initial appointment with the Oncology department to discuss chemo for this new bladder cancer.

I will post soon relating the gory details for those of you that are interested, but for now this should be enough to whet your appitite.

God bless

Graham