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

Endings and Beginnings

The more observant among you will have noticed that it is now march, spring is springing, birds are singing and the sun pokes its head out now and again. You may also have noticed that it it almost two months since I last posted. I just never seem to have the time now – there is always something else happening – normally work or sleep!

So what has happened in the last two months? Well there is a new American President, the worlds banks are slipping evermore into disaster, I have had another birthday and finished my chemotherapy.

I know, I know. I was planning to do a daily post for the last two weeks of the chemo, but after the last session I just started to get on with life, and soon the time just slipped away – you wouldn’t have wanted to hear me going on about it all anyway, but I suppose a bit of news might have been nice.

I would like to thank all the people that have been asking after me when I was too lazy to post – you know who you are :-)

The last post I made was fairly brief, in fact you might say that it was downright rude in its brevity. At that time I was into my last few days of treatment and I could barely stay awake to write.

Looking bake it has all slipped away so fast, and yet the effects are with me all the time, even now.

So some details then, I finished taking the drugs on 27th January and on the same day had an appointment with my consultant, Dr Phillips – coincidence that it was the same day though. I was due to have a colonoscopy on the 29th at SJH. When I saw Dr Phillips, he postponed the colonoscopy as it was too soon after the end of the chemo.

The appointment was rescheduled and the next day I was also sent an appointment for a CT scan, the day after the re-scheduled colonoscopy.

(time passed)

I had my colonoscopy last week, Monday 9th to be exact. I had the CT scan on 10th and finally met with Dr Phillips again on 17th.

The upshot of all of this was that he has said that everything looks normal. During the colonoscopy a few biopsy’s were taken and I am still waiting for the results of them, but the colonoscopist(?) was happy that everything was normal and was just being safe – I did get slightly worried about that, but that has kind of gone as the days have passed I will not get those results for another week or two.

As I said, the next day I had a CT scan. The results of that are that a few of the lymph nodes are slightly enlarged, but are unchanged since my first ct scan last June, the day after my operation. Since they are unchanged Dr Phillips is not worried about them.

I have been released until September, when I will have another CT scan and another consultants appointment.

So, that is the timeline and the outline of what has happened. In some ways, stopping the chemo has been a bit of a damp squib – it was just another day. I took photos of my last dose of drugs (planning to post them here) and then went to work. It has all passed way without anything to mark its passing. On the other hand I suppose that it is good that it has just gone away – it has been such a part of life for the last six months it seems odd not to have to remember to take the tablets. I still expect to have to take them now and again and then remember that I don’t have to.

I still have some of the symptoms – in fact the symptoms are worse now than they have been all the six months that I was taking the tablets.

The main effects now are that my hands and to a lesser extent feet are sore all the time – any time i move them in fact. I can’t do buttons or other fiddly things and my hands have swollen so that I can’t wear my wedding ring – although that may just be because I have put on weight! it is very wearing to have sore hands all the time – I guess that arthritis sufferers have this all the time too, bit this is a different type of pain from that.

I cannot feel properly with my hands -  and when I use my hands i have pain in them – I can feel it just now as I type. My writing is terrible because I can’t hold a pen properly and i just try to not use my hands if possible (which is not very realistic as it turns out). I seem to be more clumsy in general, occasionally staggering and dropping things that I wouldn’t have done before. I guess that these are symptoms of nerve damage (I think they are similar to the symptoms that my sister had when she was diagnosed with freidrics ataxia, although the cause of mine is quite different from hers).

I try to keep quiet about the pain – it is there all the time, but people (including me) get bored with continuous complaints about the same thing. I just try to get on with life as best I can. In the end, if I come out of this with slightly painful hands, I think I have probably won.

I have put on weight (hmmm, I’ve heard that before) since I finished. I have noticed that my clothes are a bit tight around the middle now. I have made several promises to myself (and broken then already) to stop eating so much and to get out walking/running/cycling more now that the days are getting longer.

(another much shorter break)

I wrote the last part one night when I could not sleep. I have just read it again and I actually think it makes a reasonable amount of sense.

Each day is different. My hands are still affected by the cold. I feel the pain every day, but some days are worse than others – mainly when the weather is old or damp (or both). I am hoping that are the weather gets warmer (!?!) the effects will get less.

Having said that, I know I have said it to some people before, but if I come out of this with sore hands, I think I will probably have won.