Thursday, 28 July 2011

Still taking the medicine... an update

July 28th 2011 12:00
Just to let you know that I will be doing a post next week looking back over the first 3 week chemotherapy cycle. I thought this would be better than a day-to-day tale, as that could get repetitive and boring!
A lot happened over the first 3 weeks, many changes and side effects, so I hope it will be useful to those who are on the same journey, and those who may care for them... see you next week.

Wednesday, 13 July 2011

Just to clarify.... when and why this diary was written

Hi all

I must make sure that you all know when this diary was written, so you don't think I am going through this now in 2011

I started keeping a diary on 7th July 2010, I did this to help me cope with what was happening and to be able to look back and learn. I was facing 3 cycles of chemotherapy, (called ECX). A day in hospital then 3 weeks at home taking tablets, then repeating this another 2 times.  After this was surgery, if all had gone well. To be followed by more chemotherapy.

So here in July 2011, after the chemotherapy and surgery last year (and more chemo in January 2011) I decided to try and help others who may get this, and those who will care for them. The statistics for survival of this cancer are not very good (87% never even get the chance of surgery - they are diagnosed too late) and I am trying to raise awareness of this disease so that others may not get it.  I also want to help those who may have it, to understand it better, the possible side effects they may encounter and to help give them and those who care for them hope.  I also want to educate Doctors and other health professionals as to what we, as patients go through.  this may help them understand and serve us better.  Most of the ones I have come across have been fantastic, but, in the words of my Doctor, "Bryan you are an expert patient, who knows better than anyone who hasn't been through this, what it means".

So, there you are, this was last year, and I write it now in 2011, with the hope it helps. 
I am still recovering as we speak, have some health issues and obviously hope I will make a full recovery, but I have no rose tinted glasses as regards this killer. It's one day at a time and live each day as if it's your last.  Thank you for reading this and the marvellous feedback I am getting, from this site and my posts on Facebook, Twitter and recently the Macmillan cancer support website.
As this blog develops I will endeavour to share all my experience and tips to help others. Any suggestions or comments are welcome, and if you just want to chat, that is ok to.
Be positive, its how we live our lives that count, everyone can make a difference, it just takes doing it.

Chemotherapy the first 5 days..

July 13th 2011
Well looking back is interesting; it's like another person back there, but oh so real. Chemotherapy can be different for each person and each type of cancer, so please read this post with that in mind.  My journey may not be another's.

July 7th 2010
After coming home and starting the tablets things started to happen fast, first there were the headaches, itchy legs lack of sleep and then phlegm, lots of phlegm.
On the 7th I recorded getting home, feeling exhausted and couldn't sleep after taking the tablets, bed at 10pm up at 12 midnight, very restless, got back to bed at 2am and slept a little until 7am and then got up.
8th July
I had an energy drink at 9am for breakfast and took the anti-sickness pills (1 large and 2 small). Had a hot drink to loosen the phlegm before I could eat and take my chemo tablets. Dissolved 2 tablets in warm water and had custard to help them down, sipping slowly to ensure they go down without being sick, started 9:40 finished 10:20. The day passed by feeling very tired and unwell, but my family and friends cheered me up and I am so lucky to have them on my side. In the evening I started again, took some thin soup at 7pm and started on the sickness pills, and was sick, oh well, just couldn't get them down, lots of phlegm and realised I haven't had much water all day, feel very dehydrated. I had to force my gullet open with gulps of water till it cleared, then tried the chemo tablets, again dissolved in warm water, managed to get them down with lots of hiccups, and trying all the time to keep it down. Finished about 8pm and kept it all down, another day over.
9th July
Up at 2am sick again and coughed up a lot of phlegm, but feel better after and slept again. Had some hot tea before the morning routine and stated the pills at 9:55 and finished at 10:30 a good session!
Each day I am also taking reflux tablets (Omeprazole) and these help reduce acid. Today I had homemade chicken soup (strained of course) but oh so good, then my wife Sara made me a glass of carrot and apple juice, don't ask me why these two but it seemed to really do me good and became a staple part of my diet. You have to trust your feelings for food while going through this as your body does let you know what it needs and doesn't like, trust this, it takes a while to tune in, but it is worth it.
10th July
I slept better last night, and I needed it. Off we go again, hot drink, get the phlegm up, have an energy drink (these are prescribed by the Doctor) and start the tablet routine. 9:15 to 10:00 all went well. Had a milk shake for lunch, with a banana in it, as I am short of potassium, then more home made soup, but difficult to swallow and with the phlegm took a while to get some of it down, then sicked it all up again, oh well.
Food for me has become energy drinks, thin soup and custard, what a choice, but the main thing is getting the tablets down and allowing them to do their work, so it's a case of digging in and getting on with it. It's funny everything is, hard to get up (phlegm) hard to get down (food and tablets) and then hard to keep down (everything), but as long as the tablets stay down I'm doing good.
11th July
Last night was not good, up at 1am phlegm and sick and then again at 3am.
Took Omeprazole at 8:25 and then the sick pills and an energy drink, stated chemo at 9:50 and finished at 11. Lunch was apple and carrot juice, (1 cup) followed at 2:30 by some spinach and broccoli strained soup, (1 cup). I got very tired and rested from 3 to 4:45.
Off we go again at 7pm with sick pills, energy drink followed by the chemo tablets which I finished at 8:40. God the taste is awful and I have taken to sucking pineapple ice cubes to help with this and the dry mouth, which has started.
This is a bit delicate but I should mention that I have not been able to go to the toilet (number 2's) for 4 days now, this is one of the side effects from the drugs and needs to be managed well, or problems can occur, more of that later. I will mention all that happens to me in this blog and will not leave anything out, as those who go through this and those that support them need to know what can happen and how best to get through it, sometimes this will not be pleasant reading, so skip those bits if they offend you.
12th July
Took the normal pills and energy drink at 8am and then started the chemo which lasted from 9:40 to 11:10, throat still nearly closed up and very hard to get this stuff down, it's sip, sip, sip, wait a bit and then sip again.  If only those Doctors and nurses could see me, when they talk to you it's "you just take these tablets, so many in the morning and then these ones at night. LITTLE DO THEY KNOW! Maybe they do know and it's just me but God this is hard to do. It tastes vile and wants to come straight back up again.
Spinach and broccoli soup again for lunch. A tip on the soup, Sara (my lovely wife) makes it into frozen cubes for me and then I can have it when I want it, either 3 cubes, or if feeling greedy 6! Just put in cup and microwave till hot, lovely. This evening I had a small amount of quorn and potato, mashed up fine, I managed to get it down and wrote; there is hope - I hope!. Started energy drink and chemo at 7:30 and finished at 8:45, another day gone.
So now I am into a routine, of tablets, thin foods, fighting to get phlegm up and keep all the other stuff down, and not be sick all the time, still no toilet, still very tired and some side effects starting to kick in. But me and the chemo, (or 'the chemo and I' for the purists) are on our journey, with a purpose, and that is to beat this bastard!!

Thursday, 7 July 2011

All day Chemotherapy - the start of it

July 7th 2011 - NOW
Sitting here writing this on 7th July 2011 brings back so many memories of what happened a year ago.  I can only write so much and have to leave out a lot, but I hope this gives you, dear reader, a taste of what it is like for those who go through this.  I will tell the tale of those who supported me on this journey later. The wonderfull family and friends who helped me through this. But for now lets go back one year to the start of my chemotherapy journey

July 7th 2010 THEN
Well what a day that was....
In the Ingham ward at 9am, the journey there was full of anxiety, fear and then resignation, but hope was there as well, At least I was doing something now to fight back. After 4 months of no solid food, sipping thin soup and strained porridge, gagging on energy drinks and wondering if I would ever eat a solid meal again, now began the fight.  I was told that the chemo would probably shrink the tumour, this would enable the operation to take place and maybe I would be able to eat again.  Now that is hope!
Into the hospital reception and after a short wait I was shown into the suite were the drugs are administered.  I felt like I had joined a club.  There were other people there, some waiting and some already connected up. Machines constantly beeped and nurses went about their duties quietly and cheerfully. I was shown to a chair and a nurse confirmed my details, then a warm pad was placed on my right hand, this helps raise the veins for the needle.  The drugs arrived and 2 nursed checked them off and ensured they were for me.  Everything was in order and the dreaded cannular was fitted into a vein on the top of my left hand.  It was not too bad, I had had worse in the past.  The first bag of fluid was hung from the stand and connected, this was a saline solution to flush my kidneys and hydrate me before the strong stuff, this took 2 hours.  Next was a bright red fluid, that I was warned would come out the other end as red as it went in, so not to worry. After 30 minutes another large bag of fluid arrived, covered over with a brown bag, "to keep the light out" as it is sensitive, this one took another 2 hours.  Sitting there watching these drugs go into me was strange, I again had time to reflect on my journey so far and what the future might bring. All around me were men and women, some with hair, some without, most smiled at me, some you could see were well on the way in their own journey and some like me looked nervous and scared. There was little noise except the constant beeps from the machines, the nurses taking people off and putting new people on, as we all moved through the process.  Machines would act up and demand attention and the nurses would fix, readjust and get them going again.  We all sat there watching the drugs drip into us judging how long till finished and either the next bag came or we could go home.  A lovely lady came and offered me a sandwich, "do you have any soup" I asked, " I can't eat a sandwich", she smiled, "yes got some tomato soup would that do"?  "yes please", "would you like a piece of bread and butter with it"?  "no thank you I can't eat bread and butter",  She looked at me, a little pity on her face. "Oh I see, well I'll get the soup".  It was nice.
Sometime later the sensitive drug ran out to be replaced by another, more robust (that didn't need covering up, and off we went again for another 2 hours.  Finally with another drug hooked up, to replace fluids and boost potasium levels, and another 2 hours, it was over. I was given various boxes of tablets, this for sickness, that for sickness and another, I suppose for good luck.  And last but not least the main course, the chemotherapy drugs I would take every morning and night for the next three weeks. "Just swallow them with some water, two in the morning and three at night, always the larger dose at night". I left at 5pm.

So that night I tried to take the tablets but they would not go down, they were too large, there was no room in my gullet for them.  The only thing I could do was dissolve them in water and sip until they were gone.  They tasted foul and that first night it took me an hour to get it all down.  As I lay in my bed awake at 2am with a headache, itchy legs, feeling sick and restless as anything I thought, "well at least I've started the treatment, one day at a time, one day at a time", and I drifted off to sleep.....

Wednesday, 6 July 2011

Chemo in hair out....

Diary 6th July 2010

Well this time last year I was preparing for the start of my ECX Chemotherapy, one year ago tomorrow in fact.  I was told that my hair would fall out, fact, so...... I visited my friendly barber Keith and asked him to cut it all off. "What" he said, "all of it". Yes I said and explained I had cancer and was about to lose it anyway.  He was really nice and took a small patch off and said, "are you sure" looking in the mirror I could see what it would look like, "yes go ahead, all off, but save a bit for my wife. He smiled produced a small plastic bag and discreetly put some in and handed it to me , then it was cut cut cut, and soon all gone.  Who was this bald man I saw before me, and what would the family reaction be.  Oh well, only one way to find out.  Home again and I walked right in and watched my wife's face, she smiled and said, "It suits you", running her hand over my head.  The children were ok and they said it suited me too.  I don't know why I didn't do it sooner (smile).
So to bed that night and lying awake wondering what tomorrow would bring. I was being picked up between 7:30 and 8:00 by the wondeful volunteer drivers and due to be in the Ingham ward for 9am.  I was to be on a drip all day feeding the stuff in and finishing about 5:00, so it was going to be a long tiring day..... time to sleep.