So you think it starts to get easier!

How wrong was I!! After the chat with Prof. Donde your mind definitely changes and you think I'm done, yeah a week to go and I'm outta of here, the reality is very different...

So first the sores in my mouth decided to play up big time, OMG the pain is unbearable, I can't eat, drink, swallow - ANYTHING!! with this you get headaches, nausea feeling and this thick mucus in your saliva that make you continually reach. Finally on Friday where I think I had an infection as well I had to call Dr. Boyes-Varley who was in surgery to get some relief and antibiotics, fuck! it's been hell these past few days, my weight is probably at about 90-91kgs and feel so tired its unreal.

Anyway, the antibiotics are working and the sores have receded slightly, but its still over the top pain, its even hard just laying around watching TV!!

I have a few things in work this week and then I need a break as I am knackered, both mentally and physically, I feel very weak and irritable, also I look in the mirror and if wasn't for the burning of my skin from the radiation I would see a very ill person, my face is probably thinner than I can ever remember, you suddenly look and feel very old, not pleasant at all!

Anyway, one week to go and then all thoughts have to be on recovery, which I hope I can mentally get right very quickly, I have to say this has been the worst period of my life, really shit! Sorry to end negatively but it is just too painful.....

Some Good News

So a usual day today, into work and then off to have my daily treatment, all normal....

I then see the Prof. (Donde) and again concerned that I have lost more weight - down to 92kgs, but then we go through the checklist:
Skin ok - check
Hydration good - check
Mouth sore eh yes - not sure why he asked that having just looked in my mouth!!
Taste none - check
He is amazed that I am still eating solid food, of course not enough but still he is impressed
He also tells me that I look remarkably well for the point I am at

He then tells me that the cancer has gone and that he can see know signs of it in my mouth or neck, the lymph in my neck that was enlarged has also dispersed. I thought I would feel the euphoric sense of achievement, relief or something, but it was I think a bit of "oh good, thanks" or it hasn't really hit me yet the enormity of what he had just told me, maybe because you have kind of lived with this for so many months that the reality doesn't really come through, and after all he did tell me he would cure me, so what should I feel euphoric about, he has done his job lol! I may jest but maybe that is how I have handled it, keep a sense of humour, have a smile it lifts all around you, especially in an oncology centre and most important of all be selfishly positive about the outcome and you will get there

He then sweetens it further and tells me that my treatment is now 31 days, not 35, so I finish next Saturday 4th February - so a very satisfying, good news day. He does add that the following two weeks or so after treatment are tough, but at least you haven't got more radiation going into your body, my taste will start to comeback and should fully recover within 3 months, my appetite will return and my left side salivary glands could take up to a year to kick in, so dry mouth will hang on in there I guess!

I then get the low down on next steps and they see me two weeks after I finish the treatment course for a check and then potential every 3 months, where if necessary they do a scan.

I then go and see Dr Boyes-Varley, adds that there is no infection and that we can start to put teeth back in at the beginning of March once my mouth has settled down - I can't wait!!

So, the finishing line is now in sight, it seems amazing how from feeling you have hit the wall to getting through it and carrying on feels, I think I might have to run a marathon when I am fit again and yes it would certainly be all proceeds to cancer research - any sponsors?? lol!, because these guys have been truly unbelievable and I will probably never be able to thank them enough for all they have done for me.

I guess in the next week I will sign off, add some adhoc moments post my treatment and then happily add each year as we go through one, thanks again for following my blog, unloading some of this stuff has certainly helped me and I hope in future it may help others...25th January will always be a good day for me

Week 6 - The hard yards continue

So I mentioned the other day that I felt I was out of the marathon and into the sprint, eh wrong, what I should have realised is that I am at that point in the marathon called the "wall", you hit it and ouch does it hurt, so no where near the sprint!!

In all honesty this is very difficult, on the one hand I feel a lot better, my jaw untrapped itself on Friday and over the weekend it almost felt normal, the sores in my mouth have reduced slightly, although I have new ones on my tongue which as with any tongue ulcer is fricking painful!

But, I have no appetite, I am feeling extremely tired and worn out, in fact just completley shot to bits, I don't know how much longer I can keep working for...I have been going in everyday for about 5 hours until I leave for my treatment in the afternoon, now I have treatment, go home and sleep for about 3 hours and still wake up knackered. So whilst I think I am getting over the hard part it becomes tougher in a different way, I now understand what the counsellor meant by staying physically strong, boy you need to...

I haven't really been able to do anything else except, sleep, go to work, go for treatment, sleep and try to eat which is proving to be very hard, taste is non-existent except for some foods, eggs mainly, oh and ginger biscuits for some reason, but that is about it. If I can give anyone any advise at this stage, listen to your family nagging you, as mine do, but they are right you must eat, you definitely must drink (I think that is one thing that has stopped me being hospitalised) and stay hydrated, otherwise the alternative is not good!

The IMRT machine has to be serviced this weekend which means my treatment now extends to the 8th February, not far away I hear you say, but trust me at the moment it feels like a lifetime, one nice thing today though, Ilke (the physio) who has done a great job for me gave me a gift of a fab bottle of wine that I can drink and celebrate with once this is all over, man I can't wait for that day!

Weird Week

So been a strange week this one, first I got prescribed a new mouthwash that has actually made me feel better, but as the week has worn on so you seem to go back to where you started, feeling rubbish, beginning of week could taste some food, now I can't, it's is driving me insane!!

So saw Prof. Donde yesterday...he wasn't very happy as my weight has now dropped to 93.8kgs, the conversation was quite funny, went something like:
Prof. Donde: Not very happy with you weight loss?
Me: Oh really
P.D: Yes if you lose to much more then we could have to put a line into your stomach
Me: Um, ok let me put it this way, you'll weigh me next week and I will have probably dropped another kilo, but then I only have a week to go so your not going to do that are you??
PD: Putting it like that I guess not, but try and eat more!!
Me: OK!
PD: apart from that you are in fairly good shape, so you are coping well
Me: you think so (thinking i'm not so sure, but I keep that to myself)

He then tells me that the feeling bad/good is kind of normal, but he tells me the worst period is going to be once I finish the treatment, apparently that is when you feel it the most, your immune system is shot to bits and you feel lousy...this is where I hope Aimspro will kick in and restore me to good working order quickly, I am then looking forward to getting my teeth back and then even more so looking forward to eating normally again.

Carol and Lauren arrived today which is great, so I now have a full house here, Orlanda is settling into work and started off really well so I am really pleased for her, I think she'll do a great job which I will be very proud of her for....

So, another week finishes tomorrow, the finish line is in sight and although its tough I am in the sprint now and not the marathon, so whilst the yards are hard they are not as long anymore - also being lighter I should be able to run faster..LOL!!

Have put the picture up of me about to start my treatment...the man in the mask...!

Into week Five

When I set out on this journey and sat with Prof. Donde, and he went through the side effects, the pain, the uncomfortable fact that you can't eat anything, drink anything, I sat there and thought to myself, you know what, take the pain, be a big boy, thinking there are people far worse off than I can even imagine and then this weekend kicked in...OMG!!

The ulceration in my mouth is beyond, so eating is a non-starter, drinking is like a mission, headaches - god! never known anything like it, I can feel my mouth getting tighter and tighter, some may say well at least it will shut him up for a while LOL! but even laughing is killing me, anyway I look at it this way, I am into week 5, I have two more after this, and then DONE! although upto 3 weeks post the treatment can be very uncomfortable it can't be as bad as this. It can then take up to 3 months for the taste sensation to come back (I think I might be at about 75kgs by then lol!), in fact do you know what the worst thing is, I can smell food which generally smells delicious, but then tastes crap - so that is a real mind game...Not even Sir Alex or Wenger could better that! In fact my sense of smell is stronger than it has ever been - bizzare, oh and forget any nose jokes that maybe on the tip of your tasting tongue!!

So Carol flew back to the UK on Friday, watched Braderz play hockey on Saturday at school - he is in the 1st team so well done son (one of only 4 boys from the 5th form) and Orlanda has had the pain of looking after Dad, what can I say, not a good patient but she is doing great, although she did try to kill me on the SA roads yesterday, getting confused at a traffic light!! and turning right with a car steaming towards us, I must admit I did shriek a bit!! She started work today so she really is off and running down here now, it looks like she has joined a great team so good luck to her there....

Carol fly's back to Jo'burg on Wednesday with Lauren and will now be down for a few weeks, Lauren for about 6 weeks, before she goes travelling to SE Asia so it will be great to see them, in fact I can't wait for them to get here, its incredible how more uplifting having your family around you is, I didn't think it would be that crucial (stupid I know), but it is and to anyone who is struggling you need them with you, they just make you feel so much better, even if they're giving you grief about not eating or drinking enough, at the end of the day they are trying to help you...

Had my appointment with Dr Boyes-Varley today, he is such a kind man, you can tell he does his job for the passion, very caring and totally about his patient, anyhow he has a look which is seriously painful, tells me I have an infection which needs to get sorted so back on antibiotics, I also have a bit of mouth candida which also causes pain, so got some stuff for that, and told to start taking Vitamin E which will hopefully clean up the radiation free radicals. For anyone interested it is really important to keep your mouth clean during radiation treatment, because any infection can lead to serious complications which can be worse than the cancer itself, and because your mouth is so dry this is where infections such as Candida can take advantage.

Changing the subject though Spurs were a bit disappointing at the weekend 1-1 with Wolves at home um! although not as disappointing as any Arsenal fan must be feeling, oh dear! makes you realise getting a point there wasn't that bad? so I think if we can beat Man City this coming weekend I think we could be in with a real shout - Come on you Spurs!!

I have to thank everyone for the emails I have been getting, I really appreciate the support and I think the fact that you know friends and family are there supporting you is so key to getting through this, so thanks again it really helps

The Real Fight begins

The past few days have been very tough I have to admit, the hards yards are kicking in and it hurts big time. I find my taste has pretty much gone or is varying so much that I don't know what to eat anymore, my mouth is seriously sore, Dr Boyes-Varley checked it today and the sores go all the way down my throat. Swallowing is a mission, my mouth is dry as a rock and the thought of food makes me feel ill and even water tastes like metal...so all not good in the Sharp camp. Carol is pushing me hard to try stuff, bless her, she goes back to the UK tomorrow for a few days and I am really going to miss her, I need to find the motivation to eat and especially to drink...So the fight I think starts here day 17 or 18 I think and another 17 to go......So on the toothpaste trials, we are about to embark on a special dry mouth toothpaste called biotene, lets hope it works!! I will update you in the days to come on how successful we are with it.

On the positive side, Orlanda arrived on Tuesday and has taken a day or so to settle in, she will be great company I took her down to the office today and showed her around a bit, took her up to where she will be working and met a couple of people from the Events Team, seem like really nice people and I think she will fit in really well and enjoy what should be a busy year for the bank, especially as its the 150th year for Standard Bank, you put things into context like that and you realise that my 7 weeks or so is a drop in the ocean? Steve Jennett one of my good mates who is working down here with Elix-IRR took Orlanda and Carol for coffee whilst I did my meetings - thanks Steve. We also did dinner last night with Steve and Nick, which was lovely, although I really struggled, think I ate two prawns!!

So at the oncology centre yesetrday they weighed me and was down again to 95.8kgs, I think I can still lose some weight but they tell me this is not good and that if I hit a certain weight (not aligned to what your weight can be, but they calculate what it can come down to before its a problem) then it gets very ugly, tubes into your stomach and other gross things that I won't mention on the blog...Really struggled through today, I remember the counsellor telling me that irrelevant issues become more so and with the amount of issues we are unravelling at work this is becoming hard to stay cool, have to bite my tongue - well most of the time I can't really feel it so should be ok...lol! I hope I can maintain going to work as it keeps my mind off negative stuff and keeps me busy which I think is important, but it is absolutely knocking the stuffing out of me and I might have to see how I can work differently? all ideas welcomed

I hold the best news from last night to Spurs beating Everton 2-0, a rare goal from Lennon and an absolute corker from Assou-Ekotu, so joint second, could be joint top on Sunday if we beat Wolves and if Man City lose to Wigan and we beat them the following week we will be TOP, I think even the gooners have got to say we are challenging this season for the Premiership title?

So Carol back next week on the 19th with my eldest daughter Lauren who is down for 6 weeks, really looking forward to them being here, Carol tells me the tricks I pull to try and convince her we should stay in SA, well you gotta try eh? lol! I think we'll do Easter down here now, hopefully I will be feeling a lot better and we can sample some of the wonders of this beautiful country.

The Fourth Week

First of all I can't believe I am actually entering my fourth week of treatment, time fly's when your having fun!!

so where am I, well as Prof Donde announced things would get worse and yep you've guessed it to an extent they have, but a few strange things over the past few days as well??? so, mouth has got very sore, loads of unpleasant ulcers especially in the roof of my mouth that makes eating quite difficult. The good news is I am still eating solid food, of which I can taste a great deal more!! how the hell does that work, I mean a few days ago I could taste bugger all? I have to take my hat of to McDonalds, having gone to the pictures with Carol (saw the Ides of March - well worth it by the way) I really fancied chips, had a real craving for them, anyway, popped into McDonalds, which I probably haven't been to in at least 4 years and ordered up a quarter pounder with cheese meal, and could taste the lot....just goes to show how metallic that food must be, LOL! surprisingly though since then I have had some taste back, even down to chocolate desserts; potatoes seems to be a good thing as does some salad stuff like lettuce, cucumber, etc, also Homous (think thats how you spell it) and some nutty breads work. I think its just a case of seeing what works and getting it into your stomach ASAP, so less chewing...

One problem I am now having is with toothpaste, current one is killing me, really burns my mouth so got to go a test drive some different one's!! Getting more headaches, but I think it's because I am not drinking enough, although water is coming back on the menu, so maybe it will be easier

Anyway, I am now I think 17 days today, the halfway point so just need to push on, Carol is coming to the oncology centre with me this week, I think that is an experience for her that she really shouldn't be put through, she came down and saw the IMRT machine, by the way I found out what that means - Intensity-Modulated Radiation Therapy, looking it up on gooogle I found it means that the intensity of the radiation in IMRT can be changed during treatment to spare more adjoining normal tissue than is spared during conventional radiation therapy. Because of this an increased dose of radiation can be delivered to the tumor using IMRT. Intensity modulated radiation therapy is a type of conformal radiation, which shapes radiation beams to closely approximate the shape of the tumor - pretty cool eh?

so what's been happening?

Well all I can really say is things have gone in two directions...
1. The tumour has macroscopically gone - YIPPEE!! which means I can't see it or feel it in my mouth anymore, the treatment does seem to be further advanced than expected which is good, but you have to complete the course to ensure you eradicate the cancer - I defo don't want this coming back!!

2. The side effects of the treatment are really kicking in now, saliva dried up more, taste has pretty much gone, mouth is becoming really sore and tight and the metallic taste is always there. I am about to start physio twice a week to keep the jawbone moving, also my neck feels very stressed.

The good news...my wife is now in South Africa with me prior to Orlanda starting work next week which is great, she arrives on Tuesday and starts work the following Monday. I realised that the family not coming down for Christmas has been an error and it is unbelieveable how much better I feel having Carol here. Lauren my eldest daughter is also coming down when Carol returns on the 18th January for 6 weeks, so will have both my elder kids here which will be awesome....

I have yet more "drugs" and potions to take, all of which work in certain ways and help a little.

Had a meet with the counsellor at the oncology centre this past week, which was pretty interesting, especially around how radiation therapy works with cancer which I didn't know; the basics are that the body actually likes cancer cells as it see's it as "new" growth, which is why the immune system doesn't attack it! The radiation treatment (I am on IMRT - don't know what it stands for but it is the latest technology) actually changes the DNA of the cancer cell so that the immune system see's it as a nasty and attacks it! This is why the body is tired and you feel exhausted, which the more the treatment goes on for I do feel the effects of it and feel constantly tired.

So I am now 15 days down on the treatment schedule, almost halfway, hopefully the side effects won't get to much worse, I fear they will and realise I will just have to keep focused and "take the pain". I am not really eating which is a problem that I need to rectify, but, it's very hard to look at food when you have such a disgusting taste in your mouth, so my weight is now down to 96.7kgs! Lightest I have been for a long time LOL!