Wake up this morning and the next phase kicks in mouth as dry as rock, so two sensations now departing the body me thinks...no taste, dry mouth! Right better start kicking in with all the advice I have been given...
Salt and bicarbonate mouthwash, lovely, but helps, start drinking my energade drinks more frequently, not much better then the chocolate brownie yesterday but will persevere, find I can drink a cup of tea, not to bad, add a choc chip cookie, tastes ok? what the F is that all about??
Anyway, go off to the clinic, treatment very quick as no x-rays, they weight me again and I am down to 98.5kgs, still got plenty to lose but need to try and slow that down a bit as that is about 4kgs in a week? Good diet eh!!
Welcome to my blog, my name is Stephen Sharp and this is the start of my journey to fight cancer. I will try and walk through the stages of my treatment and hopefully give anyone out there suffering with the same problem an insight into what I have been through or am going through.
Friday, 30 December 2011
Thursday, 29 December 2011
Day Seven - 29th December 2011
So, after the rise in optimism yesterday I am not feeling quite so good today.
Treatment as usual not a problem, Vanessa takes me along to the Oncology Centre, we then go and grab some brekkie, very nice poached eggs on toast, coffee...so feeling good...
We then go and have a look around a couple of furniture stores as I want to get a unit for the bedroom so I can then put a TV on it, lazy I know but thinking that it will be easier to watch the footie for when Orlanda arrives!! Anyway, decide to have some lunch and this is the first time I start to notice that food that looks good, smells good starts to taste yuk! anyway get through some calamari, can't touch the chicken livers and the prawn spring rolls are manageable, I then see what looks like a real yummy pud, chocolate brownie and ice cream, so order one up...looks fab it tatses like sh!t, Vanessa is telling me it tastes really rich in chocolate, I can't taste a thing except what I would term as gone off milk, its revolting!
Anyway, go home, watch TV, been watching the Spartacus TV Series, which is really good and then read that the star Andy Whitfield died of cancer at the age of 39, very sad and doesn't make me feel any better
Treatment as usual not a problem, Vanessa takes me along to the Oncology Centre, we then go and grab some brekkie, very nice poached eggs on toast, coffee...so feeling good...
We then go and have a look around a couple of furniture stores as I want to get a unit for the bedroom so I can then put a TV on it, lazy I know but thinking that it will be easier to watch the footie for when Orlanda arrives!! Anyway, decide to have some lunch and this is the first time I start to notice that food that looks good, smells good starts to taste yuk! anyway get through some calamari, can't touch the chicken livers and the prawn spring rolls are manageable, I then see what looks like a real yummy pud, chocolate brownie and ice cream, so order one up...looks fab it tatses like sh!t, Vanessa is telling me it tastes really rich in chocolate, I can't taste a thing except what I would term as gone off milk, its revolting!
Anyway, go home, watch TV, been watching the Spartacus TV Series, which is really good and then read that the star Andy Whitfield died of cancer at the age of 39, very sad and doesn't make me feel any better
Wednesday, 28 December 2011
Day Six - 28th December 2011
So we start again today, have woken up and definitely feel the tumour has reduced in size? Not sure if my mind is playing games with me, or is the healing process from Aimspro starting to kick in, has the radiation therapy started to make inroads already - pretty f'ing cool if they have all started working!!
anyway, bought down to earth by my visit to Dr. Boyes-Varley, who tells me my mouth has healed really well and apart from an ulcer at the bottom side of the inside of my right gum nothing spectacular to report, good news at the moment, no mouth thrush, apparently that is not very pleasant so we'll keep that at bay if we can thank you!! he then proceeds to tell me that the tumour will feel smaller as the swelling in my mouth has gone down significantly from the surgery, damn and there I thought this might all be over next week!!
Right, so off to the Oncology Clinic for my 11:15 appointment, arrive and man it is busy!! Wasn't expecting that, anyway, quick x-ray as I haven't been in for four days and treatment done, all over in 15 minutes. I then have an appointment with the Oncologist, Prof. Donde, he is an interesting character, but I like and trust him, so we go through the following;
Taste ok? Check
Skin ok? Check
Saliva ok? Check
Mouth ok? Check
Overall, he is very pleased making good progress with minimal side effects so far, ok I know what your thinking its only been a week, but I get the impression he was expecting something? he, as I do thinks the tumour has reduced, in fact quite a lot? So is it the radiation treatment - of course - he tells me that the treatment is very effective, but is it also Aimspro, who knows, but I guess it might be helping in terms of where I am in terms of side effects, I have lost another kg in weight so down to 102kgs, think I can afford to lose it at the moment!!
I leave the Oncology Centre and feel a new bounce in my step, more positive than I have been previously and feel that I am winning, in fact I feel GREAT!!!
Everybody says it and I believe it to, that to beat this disease, illness whatever you want to call it, you have to be tough mentally, think positive, fight and tell yourself that whatever you go through it's better to be alive, so don't give up and I have no intention of doing that, even if in the next few weeks my new found positiveness gets challenged again and again, as I know that I will come out of this the other end, stronger, tougher and with an amount of humility that I am thankful that I am not in the position of some of the desperate people I have seen over the past week or so, they are the real hero's, I don't know how they do it, but it keeps me going and wills me to get over this. I see one older lady most days, who looks like she has taken an absolute beating from this horrid illness and yet she quietly comes in to the centre, holds her head proudly (and why shouldn't she), speaks softly and doesn't want to be a burden, she is an inspiration and I feel so desperately for her - I truly hope she kicks the arse out of whatever cancer she has..........
Anyway, I have had a good day
anyway, bought down to earth by my visit to Dr. Boyes-Varley, who tells me my mouth has healed really well and apart from an ulcer at the bottom side of the inside of my right gum nothing spectacular to report, good news at the moment, no mouth thrush, apparently that is not very pleasant so we'll keep that at bay if we can thank you!! he then proceeds to tell me that the tumour will feel smaller as the swelling in my mouth has gone down significantly from the surgery, damn and there I thought this might all be over next week!!
Right, so off to the Oncology Clinic for my 11:15 appointment, arrive and man it is busy!! Wasn't expecting that, anyway, quick x-ray as I haven't been in for four days and treatment done, all over in 15 minutes. I then have an appointment with the Oncologist, Prof. Donde, he is an interesting character, but I like and trust him, so we go through the following;
Taste ok? Check
Skin ok? Check
Saliva ok? Check
Mouth ok? Check
Overall, he is very pleased making good progress with minimal side effects so far, ok I know what your thinking its only been a week, but I get the impression he was expecting something? he, as I do thinks the tumour has reduced, in fact quite a lot? So is it the radiation treatment - of course - he tells me that the treatment is very effective, but is it also Aimspro, who knows, but I guess it might be helping in terms of where I am in terms of side effects, I have lost another kg in weight so down to 102kgs, think I can afford to lose it at the moment!!
I leave the Oncology Centre and feel a new bounce in my step, more positive than I have been previously and feel that I am winning, in fact I feel GREAT!!!
Everybody says it and I believe it to, that to beat this disease, illness whatever you want to call it, you have to be tough mentally, think positive, fight and tell yourself that whatever you go through it's better to be alive, so don't give up and I have no intention of doing that, even if in the next few weeks my new found positiveness gets challenged again and again, as I know that I will come out of this the other end, stronger, tougher and with an amount of humility that I am thankful that I am not in the position of some of the desperate people I have seen over the past week or so, they are the real hero's, I don't know how they do it, but it keeps me going and wills me to get over this. I see one older lady most days, who looks like she has taken an absolute beating from this horrid illness and yet she quietly comes in to the centre, holds her head proudly (and why shouldn't she), speaks softly and doesn't want to be a burden, she is an inspiration and I feel so desperately for her - I truly hope she kicks the arse out of whatever cancer she has..........
Anyway, I have had a good day
Tuesday, 27 December 2011
Christmas
So what have I done over the last few days, well apart from having Christmas lunch with Vanessa (my landlady) and her family on Christmas day at the Inanda Club (Polo club, not as posh as it may sound) absolutely bugger all!!
I have done nothing, watched movies, football, good to see Spurs beat Norwich 2-0 and challenging for the title - long way to go though for them, so not counting chickens yet, but we are playing really well, first time I have watched them in comfort!! Oh and sleep, seems to be my favourite pastime at the moment!?!?!
Skyped the family through the weekend, although they are far to busy having fun which is great..x
Managed to burn my arm using the blender to make soup - Ouch! although the soup of spinach, brocolli, onion, garlic and bacon and a chicken stock is delicious, if not a bit green?? should be good for me though!!
So that's been my Christmas and apart from the torrential rain and thunderstorms, not very exciting at all, defo should have had the family down here with me, but you know what they say about hindsight - it's a bummer!!
I have done nothing, watched movies, football, good to see Spurs beat Norwich 2-0 and challenging for the title - long way to go though for them, so not counting chickens yet, but we are playing really well, first time I have watched them in comfort!! Oh and sleep, seems to be my favourite pastime at the moment!?!?!
Skyped the family through the weekend, although they are far to busy having fun which is great..x
Managed to burn my arm using the blender to make soup - Ouch! although the soup of spinach, brocolli, onion, garlic and bacon and a chicken stock is delicious, if not a bit green?? should be good for me though!!
So that's been my Christmas and apart from the torrential rain and thunderstorms, not very exciting at all, defo should have had the family down here with me, but you know what they say about hindsight - it's a bummer!!
Friday, 23 December 2011
Day Five - 23rd December 2011
So first week done, after this session I have a good few days off for Christmas, it's also avery special day as it's my daughter Orlanda's birthday - happy birthday baby xx
Treatment is very quick today, in and out in minutes which is nice, but again get home and whacked!!
so thats it until after Christmas, here in SA they have just declared the 27th as a public holiday so no treatment now until the 28th....have a good one all
Treatment is very quick today, in and out in minutes which is nice, but again get home and whacked!!
so thats it until after Christmas, here in SA they have just declared the 27th as a public holiday so no treatment now until the 28th....have a good one all
Thursday, 22 December 2011
Day Four - 22nd December 2011
Much the same as other days, went into work and then saw Dr. Boyes-Varley, who checks over my mouth and tells me that it's healing very well and no effects from the first few days of the radiation therapy.
Then its down to the oncology centre, x-rays as usual and then treatment, all over in a gif as the other days
Get home and surprisingly feel very tired, no other effects, although my sleep pattern getting really mixed up with these 2-3 hour sleeps in the afternoon..
So what vitamins am I taking?
I have been taking, Omega 3 with vitamin E, Vitamin D3, Bi-Quinol CQ10, also Procydin which is a nutrional supplement - an antioxidant free radical scavenger
I have also been taking to support my High BP and cholesterol - Niacin B3 and Red Yeast Rice, interestingly my Cholestrol has dropped to 4.6, from about 6.7, which is much lower than when I was just taking Simvastatin, my BP is steady now as well, although the Candesartan I take has seemed to keep this in check, the big thing for me here is to get off the statins!!
As mentioned before I am also injecting every other day Aimspro, which I think is definetly helping with the healing process..long may it continue to do so!!
Then its down to the oncology centre, x-rays as usual and then treatment, all over in a gif as the other days
Get home and surprisingly feel very tired, no other effects, although my sleep pattern getting really mixed up with these 2-3 hour sleeps in the afternoon..
So what vitamins am I taking?
I have been taking, Omega 3 with vitamin E, Vitamin D3, Bi-Quinol CQ10, also Procydin which is a nutrional supplement - an antioxidant free radical scavenger
I have also been taking to support my High BP and cholesterol - Niacin B3 and Red Yeast Rice, interestingly my Cholestrol has dropped to 4.6, from about 6.7, which is much lower than when I was just taking Simvastatin, my BP is steady now as well, although the Candesartan I take has seemed to keep this in check, the big thing for me here is to get off the statins!!
As mentioned before I am also injecting every other day Aimspro, which I think is definetly helping with the healing process..long may it continue to do so!!
Wednesday, 21 December 2011
Day Three - 21st December 2011
So usual start, off to work for few hours and then back home to be picked up by Vanessa and off to the Oncology Centre. They weigh me today and notice from when I waeighed myself in the UK a few days ago I have dropped a further 2kgs, still far to heavy but doing my best on eating those calories!!
Still taking x-rays which take 10-15 minutes or so and then usual treatment, today though I am off for physio as my jaw aches a lot, although after physio I feel like its broken, but she assures me it will feel better as it loosens up - I hope so...jeepers
Anyway get home and sleep for hours, probably won't sleep this evening now...losing my appetite but I think its more of a case I can't be bothered, to much going on in my head to think about food...
Still taking x-rays which take 10-15 minutes or so and then usual treatment, today though I am off for physio as my jaw aches a lot, although after physio I feel like its broken, but she assures me it will feel better as it loosens up - I hope so...jeepers
Anyway get home and sleep for hours, probably won't sleep this evening now...losing my appetite but I think its more of a case I can't be bothered, to much going on in my head to think about food...
Tuesday, 20 December 2011
Day Two - 20th December 2011
Up fairly early and go into work, not feeling to bad, do a few hours in the office and then back home to meet up with Vanessa to take me up to the Oncology Centre, this by the way and one of the reasons for taking the treatment in SA is that it is only 5-10 minutes from where I live.
Anyway today much quicker, x-ray only takes a few minutes and then onto the treatment, again same sort of affect after it finishes, although my jaw is noticeably more painful, so have organised for physio after treatment tomorrow. For anyone interested tomorrow when I have it all in front of me I will list out all the vitamins, skin creams, etc that I am using which I hope will make this all the more bearable - along with Aimspro!!
Get home and sleep for a few hours and quickly pop out for a bit of Christmas shopping, not really hungry so finishing this and going to bed...nite nite
Anyway today much quicker, x-ray only takes a few minutes and then onto the treatment, again same sort of affect after it finishes, although my jaw is noticeably more painful, so have organised for physio after treatment tomorrow. For anyone interested tomorrow when I have it all in front of me I will list out all the vitamins, skin creams, etc that I am using which I hope will make this all the more bearable - along with Aimspro!!
Get home and sleep for a few hours and quickly pop out for a bit of Christmas shopping, not really hungry so finishing this and going to bed...nite nite
Monday, 19 December 2011
Arrive back in Johannesburg
So, good flight on Virgin Atlantic, what a great airline, really took care of me and helped me with my "dry ice" package with my medication in it, through the airport fairly quickly as no-one around, holiday season big time in Jozi....
Get home, unpack, shower and Vanessa (my landlady) calls and offers to take me to the oncology clinic, in fact I don't have a choice she insists and also tells me she is going to take me everyday in case I am not feeling good.
so, day one - ground zero for me, get to the clinic, they have to take x-rays to ensure they have the right dimensions and are directing the radiation to the right points at the right levels, all very intricate and with this mask on, very uncomfortable, after an hour we take a break as there is a clitch with the computer on the dosage levels - would like them to get that right!! anyway, get back on the table after about another 20 minutes and they start the treatment, lasts all of about 7 - 10 minutes...what do I feel?
Well, the first thing I notice is that I feel a bit dazed, my jaw joint on the right side of my face is a bit sore and thats about it, anyway, we stop off for something to eat and I must admit I start to feel really tired.
Get home and sleep for about an hour and a half and then go off and meet Nick and his family and Angela, have a nice meal and then home and now really knackered so off to bed..A busy first day!
Get home, unpack, shower and Vanessa (my landlady) calls and offers to take me to the oncology clinic, in fact I don't have a choice she insists and also tells me she is going to take me everyday in case I am not feeling good.
so, day one - ground zero for me, get to the clinic, they have to take x-rays to ensure they have the right dimensions and are directing the radiation to the right points at the right levels, all very intricate and with this mask on, very uncomfortable, after an hour we take a break as there is a clitch with the computer on the dosage levels - would like them to get that right!! anyway, get back on the table after about another 20 minutes and they start the treatment, lasts all of about 7 - 10 minutes...what do I feel?
Well, the first thing I notice is that I feel a bit dazed, my jaw joint on the right side of my face is a bit sore and thats about it, anyway, we stop off for something to eat and I must admit I start to feel really tired.
Get home and sleep for about an hour and a half and then go off and meet Nick and his family and Angela, have a nice meal and then home and now really knackered so off to bed..A busy first day!
Sunday, 18 December 2011
Week 12th Dec. - Birthday week - probably need to forget that!!
So week off, well not really, we have decided that as I am back in SA for Christmas that we will do our Christmas Day on the 17th, so mad panic to sort the house out, loads of little jobs get done, new light fittings put up, bathroom floor scrubbed and the slate tiles re-sealed, pictures put up, house has been in a state of redecorating for what seems like 3 months!! so rooms to finish there, Moved half the house down to the shed, chucked out most of the stuff that was already there, usual sort of stuff that people do, just haven't done it for years!!, put new wardrobe up in Kendals bedroom.
So how is my mouth doing, well beginning to eat better having seen the doctor last week who also mentioned to eat loads of calories, I mean that is like a red rag to a bull so come on, cakes, ice cream, etc...all in the name of recovery of course. Jaw isn't as sore and my gum is healing well, can use my electric tooth brush on it now to clean it.
Orlanda gets her job offer from the bank so she is very excited and will look to come down to SA now on the 9th or 10th January. It will be great having her around
So, Friday we go out for dinner for the B-day, really enjoyable, just local in the village. I also see Prof. Haq who checks me over and gives me my prescription for Aimspro to get me through the treatment stage. I don't really know what to expect, he believes it will really help reduce the side effects, he already believes the healing of my gums has been quicker due to Aimspro, I hope he is right as this will be a great supportive treatmenet for other people if it works for me and trust me I will rant on about it forever
so, Saturday, all the family over and Carol puts on an amazing dinner for 21!! We somehow manage to fit everyone in our dining room, have a great night and realise that it will be the last night of drinking anything decent for the next 3 months!! So out comes a 1990 Dom Perignon, which was lovely, slightly flat, dark in colour but tasted sensational, certainly a thought I will keep with me through these dark moments of radiation treatment.
Write a card to each of my kids, which is very emotional for me and I am sure for them when they read it, but I think it is important they know how you feel, that I am a fighter and will win, that I am positive and trust the medical team to get me through this but most importantly I love them more than anything else in the world and whatever happens that will never change. So, off to the airport to start the next stage of this journey, what do I expect - don't know, what am I thinking - that it will be tough, that I will get through this and that pain serves to remind me that I am getting better, that the treatmenet is working and that I'll have a few years left in me yet...
As I go through these next 35 plus days I will try and update the blog daily
So how is my mouth doing, well beginning to eat better having seen the doctor last week who also mentioned to eat loads of calories, I mean that is like a red rag to a bull so come on, cakes, ice cream, etc...all in the name of recovery of course. Jaw isn't as sore and my gum is healing well, can use my electric tooth brush on it now to clean it.
Orlanda gets her job offer from the bank so she is very excited and will look to come down to SA now on the 9th or 10th January. It will be great having her around
So, Friday we go out for dinner for the B-day, really enjoyable, just local in the village. I also see Prof. Haq who checks me over and gives me my prescription for Aimspro to get me through the treatment stage. I don't really know what to expect, he believes it will really help reduce the side effects, he already believes the healing of my gums has been quicker due to Aimspro, I hope he is right as this will be a great supportive treatmenet for other people if it works for me and trust me I will rant on about it forever
so, Saturday, all the family over and Carol puts on an amazing dinner for 21!! We somehow manage to fit everyone in our dining room, have a great night and realise that it will be the last night of drinking anything decent for the next 3 months!! So out comes a 1990 Dom Perignon, which was lovely, slightly flat, dark in colour but tasted sensational, certainly a thought I will keep with me through these dark moments of radiation treatment.
Write a card to each of my kids, which is very emotional for me and I am sure for them when they read it, but I think it is important they know how you feel, that I am a fighter and will win, that I am positive and trust the medical team to get me through this but most importantly I love them more than anything else in the world and whatever happens that will never change. So, off to the airport to start the next stage of this journey, what do I expect - don't know, what am I thinking - that it will be tough, that I will get through this and that pain serves to remind me that I am getting better, that the treatmenet is working and that I'll have a few years left in me yet...
As I go through these next 35 plus days I will try and update the blog daily
Friday, 9 December 2011
Week 5th Dec. - UK and still in recovery mode
So this week has been an interesting one, done a few days in the office, and met up with some old friends which is always a great life lifter, nothing like reminicing and then also being able to look forward to the future at what they and you are doing. I have found that talking through your situation is a great way to:
1. Level you, as there are always people out there in a worse place than you and the number of people that tell you about there loved ones or family members with cancer is amazing
2. Balances your mind, I have found that the more I talk about this illness the more I get it straight in my own head, I feel very positive and believe my inner strength to beat this will see me through
So met Mr Danford, this was on the recommendation of Mr Boyes-Varley. Carol came along which was good as he did a few things to alleviate her concerns. first he talked through the prognosis, the treatment plan I was on and agreed that the guys in SA were doing absolutely the right thing, he then went into detail as to why surgery should only be considered as a later option;
Basically, due to the size of the tumour (3cm in diameter) it would mean the surgery would be pretty invasive into my mouth with as much as 7cm diameter being cut out of my soft pallete, leaving a huge hole, even though they can fill this with tissue it is obviously static tissue and doesn't work in the same way as the main tissue there, which controls your swallowing, food intake, even your voice, all of which can be significantly impacted by this type of surgery....so radiation is the first and best option.
I have decided to take next week off and spend so quality time with the family, I'll pick Bradley up from his school on Saturday and that will be him finished until the new year. He has had his own trauma with having his appendix removed, still managed a jig or two at the wedding the other week!! He missed about 5 weeks of school though so not good in a GCSE year!!
1. Level you, as there are always people out there in a worse place than you and the number of people that tell you about there loved ones or family members with cancer is amazing
2. Balances your mind, I have found that the more I talk about this illness the more I get it straight in my own head, I feel very positive and believe my inner strength to beat this will see me through
So met Mr Danford, this was on the recommendation of Mr Boyes-Varley. Carol came along which was good as he did a few things to alleviate her concerns. first he talked through the prognosis, the treatment plan I was on and agreed that the guys in SA were doing absolutely the right thing, he then went into detail as to why surgery should only be considered as a later option;
Basically, due to the size of the tumour (3cm in diameter) it would mean the surgery would be pretty invasive into my mouth with as much as 7cm diameter being cut out of my soft pallete, leaving a huge hole, even though they can fill this with tissue it is obviously static tissue and doesn't work in the same way as the main tissue there, which controls your swallowing, food intake, even your voice, all of which can be significantly impacted by this type of surgery....so radiation is the first and best option.
I have decided to take next week off and spend so quality time with the family, I'll pick Bradley up from his school on Saturday and that will be him finished until the new year. He has had his own trauma with having his appendix removed, still managed a jig or two at the wedding the other week!! He missed about 5 weeks of school though so not good in a GCSE year!!
Thursday, 1 December 2011
Week 28th Nov. - In The UK Resting & Recovering
Well not really this week I have spent a few days in the office, catching up with people in London, but was great to have lunch with Carol & Lauren up in the city.
Went to Jersey on Tuesday to meet the team there, very pleasant day, although made longer by the virtue of flights only from Gatwick!! Not clever when you live in Buckinghamshire, anyway good day even though it was an early start.
Mouth beginning to feel a bit better, My jaw is still pretty sore and it is still difficult to eat but improving everyday, the lump in my mouth seems more noticeable now the teeth have been removed, not sure if that is figmant of my exploding imagination or whether it has grown, probably a bit of both?
Went to Jersey on Tuesday to meet the team there, very pleasant day, although made longer by the virtue of flights only from Gatwick!! Not clever when you live in Buckinghamshire, anyway good day even though it was an early start.
Mouth beginning to feel a bit better, My jaw is still pretty sore and it is still difficult to eat but improving everyday, the lump in my mouth seems more noticeable now the teeth have been removed, not sure if that is figmant of my exploding imagination or whether it has grown, probably a bit of both?
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