Tuesday, 22 May 2012

How Long?

Earlier last week I was told I would not make it it past the weekend. During this past few days I felt suspended between life and death. Now I feel  I am moving forward and although I have death running around my head I am happy that I hopefully I will see more days than I first thought - the prayers are flooding through from everyone that do the prayer thing (WHICH I KNOW HELPs!)

The nurses at Ashgate are great and are just checking my fluid bag.....I love the fact that we all work together...they really are the best in their field!!!

Please be thankful for their care that is extending my chubby life LOL

God Bless All

Much love

Tony xxxx

Sunday, 15 April 2012

Derwent Dambuster Challenge

Dear All,

As many of you know and have kindly sponsored me already, I was due to do the Derwent Dambuster Challenge walk next Sat 21st April 2012.

Due to recent events relating in 2 stays in hospital and reactions to chemotherapy etc I am unfortunately not in a fit state to complete my personal challenge and at the same time gaining some sponsorship for the registered charity. The tumour/s in my backside..muscles are not responding particularly well to the switch in pain relief so I am barely able to walk 10ft to the toilet let alone 10 miles round the Derwent Dam! I do hope that those that have already so generously sponsored me already, are happy to continue with the brave Frances doing the walk and any others out there yet to sponsor me/ Frances will do so if you are able.

I thank you all and once again apologies that I am unable to make the challenge but I am sure you understand!

Much Love to all

I am number 212 which I hope will be available for Fran to use...have a look on the website.


Tony xxx

Monday, 9 April 2012

Safe and well back at home

Dear all,

Many many thanks for the kind words of support and prayers. Ma has been keeping my friends in Cancer Research up to speed a a high level and I will give a bit of detail here for all...

As you all know I was very unwell after my chemo on 27th February and missed my birthday on 01st March as just couldn't face anything. I wasn't eating or drinking at that time and was admitted to WPH on 05th March for 8 days, returning home after experiencing a very bad UTI on 13th March.

I rested until my next lot of chemo an even though the signs were there not to go for the chemo I still went ahead on 26th March (changed chemo from Irinotecan to Oxaliplatin). Unfortunately the same pattern followed  and by Sunday 01st April I was admitted to WPH.

By Mon 02nd April I was suffering with the worse case of diarrhoea and vomiting you could ever imagine...It was that bad I can't even joke about it. The ward toilet had to be closed and I used up the ward supply of adult pull-em-ups - I was allocated a private room and a toilet specifically for me so that tests could be carried out. By Tuesday everything had started to settle, all that could be noted was a bad reaction to the chemo tied in with the continuous bowel and bladder infections brought on by the suspected fistula between my bowel and colon. As my temp continued to spike up and down I was kept in until they settled. Dr F came in to see me on Thursday and said that if things continued as they were I should be home for Easter. :-)

...Thurs Eve post blood review - the duty Doctor told me that I was not very well as I had a high temp and Neutropenic (suffering from Neutropenia). Bed rest and a definite stay in hospital is a must.

...Fri Eve, Neutropenia getting better. A high red blood count causing anaemia discovered. A review in 12 hrs decided on.

... Sat day, Still high red cell count evident so decided a couple of bags of blood decided upon, which would be monitored closely over 12-24 hrs.

...Sun day, Due to no high temps and level white and red blood cells I was able to come home Sunday lunch time. :-)

When I came home Fran made me a tin of Scotch Broth and some fresh bread and butter , I hadn't eaten at home properly for over a month so when I started to eat like I hadn't eaten for ages it was exactly true.

Next Steps:

Weds 11th April - Urologist review (Dr Shipstone), I suspect this area is the cause of many of my problems so cant wait for the investigation to be carried out by the experts!

Thu 12th April - Oncologist's review, where Fran and I will discuss my current and past chemo treatments to see if anything could have been done differently and my future chemo plan!

Speak to all soon...

Tony xxx

Friday, 30 March 2012

Dawning of a new era!

Today two of the best chaps around came to visit....My Boss Richard Courtney and the RRD HR person looking after my case Alastair Swindlehirst. They came not for a nice visit but one to sign off my medical dismissal. I am not ashamed to admit that I cried alot last night when I read the letter explaining the process.

Anyway, I would not have wanted that conversation to be had by two nicer chaps. It started with us comparing scars from leg wounds and ended on a conversation about Disneyland.  My time at RR Donnelley has been relatively short in comparison to the time actually worked. I have, I would like to say, delivered some good projects in my time there and been well recognised for the deliverables....that is how RRD work...You do a good job and are well rewarded for that work..I Shall miss RRD hugely both the people and the company.  I have worked for some good companies in my time but can quite honestly say that RRD is by far the very best.

There will be current employees out there who will disagree, however I know best how they have looked after me in my time of sickness.

Now it comes to talk of my cancer....

I have at this stage decided to cease current chemo treatment. On Monday last I had a drug called Oxaliplatin and another called Raltitrexed and have felt nothing but sickness for the past week. I have eaten next to nothing alongside nightmares. The last treatment I had called Irinotecan and Avastin did me not much better although at least I fared better at 17 treatments. A bit of a rash decision some might say however I believe in the power of God and the Universe and frankly when I had 3 months off drugs and rested my mind and body I felt so much stronger and better for it so will stick with my rash decision for now!   Lets see what happens when I discuss it with my oncologist Dr Furniss and friends and family!

So ending on a note to say goodbye to Carole...A great and good friend who had her ceremony in Epping Forest last Wednesday. I will miss you greatly, so a fond farewell....and hello to Lisa (Shents) who wrote the best note 

Much Love to all

Tony xxxxx

Friday, 23 March 2012

The Latest Update 22.03.12

Dear All,

On Tuesday this week (20/03) I visited Chesterfield Hospital -Calow to see my Palliative Care consultant Mr Brooks. I have been twice before and seen his registrars who were brilliant and set me on my way with pain relief. This time Mr Brooks increased my pain relief from 80mg of Oxy Codone (Oxy Contin) to 120mg. In addition my 'breakthrough' pain medication Liquid Oxy Codone was increased from 2.5ml to 4ml. The secret of managing the breakthrough pain we have discovered, is to take the full dose and lie on my bed until the pain subsides.

As well as visiting Mr Brooks this week I went to see Dr Furniss yesterday, Thursday (22/03). Fran was clearly concerned with me continuing with the current regime of medication and if the truth be known so was I.

When I got in the little room and one of Dr Furniss' registrars entered we had a good discussion as to what was and what could happen. Option 1, was to reduce the Irinotecan dosage and remain at current dose of Avastin. I said I was not happy with carrying on with any amount of Irinotecan as although I was recently affected by infections etc there was still an ongoing reaction to Irinotecan which occurred within a couple of days post infusion. It actually frightened Fran as she could see from the front-line what was happening. Therefore Dr Furniss' registrar went away to contact Dr Furniss to see what else was available...

As from next Monday (26/03) I will be on a 3 weekly dose of Raltitrexed (Tomudex) in addition I would be on  another chemo drug called Oxaliplatin (Eloxatin). Have a look on the internet as to side effects as there are the usual for all chemo drugs like tingling in the hands, nausea/sickness and fatigue. There are a couple of specific ones particular for each one of the chemotherapy drugs as follows...


Laryngeal Spasms where due to coldness in the air or in drinks caused shortness of breath - I have to gently warm my neck and take deep breath through my nose.


Not really anything worth noting apart from taste changes etc

In addition to these two drugs Dr Furniss is to attempt to gain funding for Bevacizumab (Avastin) which I am currently on. However with any change in drugs mixing, new funding. I have my fingers crossed.

I spoke with Chris and Colin on Tuesday who popped round for a chat and one of their empowering prayers. I prayed for Carole's family for more of the amazing strength they are all showing. Thank-you to you both who as always seem to appear when I need them both. Very special people!

So that is it for now....I will update you all after Monday.

p.s. During my visit to Calow I popped in to visit John (undergoing intensive radiotherapy to his jaw) I dropped off a present of natural Aloe Vera as I know this stuff works - unlike the sun relief stuff which is alcohol based which I put on my bum. This made me scream which Fran and Charlotte once they heard what I had done thought it hilariously funny and frankly after the burning had died down so did I.

I spoke with Gerry who is a fellow suffer' like my good self. The hospital reset his in spine pain relief which had fallen out, which explain his enormous pain. They moved the needle to below a different vertebrae and as Gerry said changed the pain relief brilliantly...He felt almost normal!

Will speak soon, to all of you!

Much Love

Tony xxxx