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, 30 March 2012
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...
Oxaliplatin:
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.
Raltitrexed:
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
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...
Oxaliplatin:
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.
Raltitrexed:
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
Saturday, 17 March 2012
RIP Dear Carole
I am sorry to say that one of my dearest friends has finally lost their struggle against this disease... As her sister Sarah quoted...Carole did not give up her fight it was just the cancer was too big for her.
I was lucky to have met Carole recently at her home in London - Carole and our other friend Lisa met as we were the remaining members of a gang of 5...Rose and David had also sadly lost their lives last year.
I was also very honoured to meet with Sarah (Carole's lovely sister) and her partner Manolis, also we me James (Carole's eldest son) and his partner Leanne. Alongside Djamal (Carole's youngest) and Tom (Lisa's son)...
It truly was a day to remember, of friendships and chicken and chips alongside doughnuts...just normality all have a good lunch...It wasn't until later that I realised the meeting maybe our last.
Much Love
Tony xxx
I was lucky to have met Carole recently at her home in London - Carole and our other friend Lisa met as we were the remaining members of a gang of 5...Rose and David had also sadly lost their lives last year.
I was also very honoured to meet with Sarah (Carole's lovely sister) and her partner Manolis, also we me James (Carole's eldest son) and his partner Leanne. Alongside Djamal (Carole's youngest) and Tom (Lisa's son)...
It truly was a day to remember, of friendships and chicken and chips alongside doughnuts...just normality all have a good lunch...It wasn't until later that I realised the meeting maybe our last.
Much Love
Tony xxx
Wednesday, 14 March 2012
I'm Still here!
Dear All,
Very many thanks for the kinds words of support. For the past few weeks post chemo, I have been unwell..Not quite sure what has been wrong but the symptoms have been a cold/flu, lethargy, nausea. I have not been wanting to eat anything and as for drinking, water made me feel physically sick which is a strange sensation.
I have been totally listless and once in bed have not felt like leaving it for anything with either sleeping or staring into space. I have been in a weird frame of mind with hallucinations like getting up for work for 1/2 hour until Fran convinced me to go back to bed. Strange, strange times and very worrying.
I also felt rather warm and after Fran took my temperature she decided not to listen to me (like she ever does!) and contact our GP surgery. Dr F discussed with Fran and after a short period of deliberation it was decided that Fran should contact WPH. As with most cancer issues...when an increase of temperature is involved a call to the hospital is required then a visit. The increase in temp usually denotes an infection and a drop in red blood cells. Fran was asked if she could drop me in to the hospital and once a bag was packed we were on our way.
Thankfully when we got there and I was on the assessment ward a consultant was available last Tuesday evening so got me on some different medication. Fran also noted to the team that I had previously been sick and therefore had not taken full effect of my tablets - therefore when considering my drugs intravenous was the only way for a period of time. So loads of needles and syringe drivers were the way forward. I have decided not to list everything that happened but was caught up with UTI Sepsis amongst other infections. IV antibiotics helped enormously
Well I am now back home and with Fran off at work I am now in a very peaceful house
Much Love to all
Tony xxxx
Very many thanks for the kinds words of support. For the past few weeks post chemo, I have been unwell..Not quite sure what has been wrong but the symptoms have been a cold/flu, lethargy, nausea. I have not been wanting to eat anything and as for drinking, water made me feel physically sick which is a strange sensation.
I have been totally listless and once in bed have not felt like leaving it for anything with either sleeping or staring into space. I have been in a weird frame of mind with hallucinations like getting up for work for 1/2 hour until Fran convinced me to go back to bed. Strange, strange times and very worrying.
I also felt rather warm and after Fran took my temperature she decided not to listen to me (like she ever does!) and contact our GP surgery. Dr F discussed with Fran and after a short period of deliberation it was decided that Fran should contact WPH. As with most cancer issues...when an increase of temperature is involved a call to the hospital is required then a visit. The increase in temp usually denotes an infection and a drop in red blood cells. Fran was asked if she could drop me in to the hospital and once a bag was packed we were on our way.
Thankfully when we got there and I was on the assessment ward a consultant was available last Tuesday evening so got me on some different medication. Fran also noted to the team that I had previously been sick and therefore had not taken full effect of my tablets - therefore when considering my drugs intravenous was the only way for a period of time. So loads of needles and syringe drivers were the way forward. I have decided not to list everything that happened but was caught up with UTI Sepsis amongst other infections. IV antibiotics helped enormously
Well I am now back home and with Fran off at work I am now in a very peaceful house
Much Love to all
Tony xxxx
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