Off to Scotland

Flying up to Scotland for family wedding this coming weekend, not feeling at my best and after the flight feeling pretty rough, my jaw is giving me a lot of grief, very painful and I feel very tired, not sure if this is the effects of taking aimspro as I think until the body gets used to it it knocks you out for a while.

Get to the castle for the wedding, spectacular.....I won't bore you with the full details of the wedding, but suffice to say was a great weekend, managed to eat some of the food, but my appetite has disappeared so not eating that much, partly as I am having some trouble swallowing, but think this is a combination of the gum swelling from the Op and the lump seems to be slightly larger than before, again not sure if this is just my mind working overtime or the fact that with no teeth it just feels different?

Arrive in the UK

Flight arrives on time, have slept the whole flight which was good and feel in reasonably good shape, have a number of things on today, most importantly I see the family which is great, have really missed them since this "medical problem" arose!

I am off to see Prof. Syed Haq this afternoon to start treatment with Aimspro. Aimspro is a drug that he believes will work in conjunction with my radiation therapy and will hopefully at best kill off the tumour quicker, but at least reduce the side effects you get with the radiation treatment, if thats the case I will be singing from the hilltops about this drug, especially as I am an investor!! I'll become a real life case study and there best salesman!!

Still got pain in my jaw but hopefully over the coming week or two that will subside.

Returned to the UK

So tonight I fly back to the UK, really looking forward to seeing the family.

Still got pain in my jaw from the operation, but certainly on the mend, although eating and swallowing is a challenge, I guess over the coming weeks, months I need to get used to this and fight through it!

Monday and back at work

Get up early for work as usual, face and jaw is a bit sore, but take all my drugs, eat my porridge, suddenly developed a taste for it which is good as it slips down easily.

Get into work for the normal day with the exception of popping up to see Sabine who has quick look at my teeth and then to Dr. Boyes-Varley, who has good look and is satisfied with the current state, wants to see me before I fly back to the UK on Wednesday.

As the day passes I find it harder and harder as my jaw and mouth get very sore, obviously to much talking, have to do less or start to define my own sign language?

Get home, and watch the mighty Spurs beat Aston Villa, up to third now and more importantly the top team in London - YES!!

First day on my own

So sunday is the first day on my own after the operation and feeling a bit low, a lot of pain in my jaw and struggling to eat. Although, I made an interesting soup just by chance of broccoli, spinach, onion, garlic and bacon, boiled it all up and the put through the blender, added a bit of cream and pepper and it went down a absolute treat - I guess I should start getting used to food like this, anyway an early night and off to work in the morning

This weekend

So got up Saturday morning, most of the swelling has gone down except for around my lower right jawbone which is obviously where all the truama from the teeth being removed is.

Angela and I have some breakfast, bless her she has stayed over just in case, we then go and buy foods that I think I can eat for the next few days before I fly back to London. Off to a light lunch at Morningside Mall (into Tsunami) for some sashimi.

Get home and Nick comes round, all hungover from a big night out and within seconds falls asleep on the couch watching the footie - his team as well!! sadly the gooners win, Nick is a big Arsenal fan so we have some friendly rivalry and banter as I am a Spurs fan - he then goes off home and for the first time in 36 plus hours I am on my own.

I am generally quite comfortable on my own, I am very fortunate to have found a house in SA that is very homely and comfortable, it has helped me settle down very well here. I make myself some food, take all the drugs I need to take for pain, infection, etc. I really want to have the least amount of trouble with all this and especially as I want to be in as good shape as possible for when I get home. My brother-in-law Carol's brother Scott marries his partner at the weekend up in Scotland which I am really looking forward to going to, especially as I am meant to be the official photographer.

Into the hospital for Operation - TEETH EXTRACTION

Angela comes to pick me up about 09:45, having come from her own Ultrsound scan on her thyroid, having spent the previous few days with me she has got herself worried about a lump in her throat, typically been the same as me, left and left it!! but I am glad this has spurred her on to do something about it, and I am sure it will be fine...

Anyway, first stop is back to see Sabine  so she can clean and polish my teeth (including the one's that are being taken out - bless her!!). I spend an hour or so with her checking them all, telling me about the meeting they have had today where they were discussing my case, again it shows that the whole team is involved and I feel better to know this, so I leave with instructions to buy and electric toothbrush, she gives me (well charges me!!) a baby toothbrush as I will need to brush the gums gently to help the healing process and sends me on my way.

Angela and I then drive literally 100 metres to the hospital, where I check in and breeze through up the ward, AXA-PPP have done there job and sorted out all the medical costs, in South Africa it is very much like the US, payment for all medical treatment has to get done in advance generally, so you have to get letters of guarantee, etc sorted out, after a few exchanges this now all seems to be sorted out and as I say going through the hospital was quick and easy.

I get up to the "Neck and Head" ward and check-in, the nurses are lovely, we have a good old laugh and joke as they go through all the paperwork and get everything organised, they then take me to my room, its about 12:15. I am Dr. Boyes-Varley's last procedure for the day, so I have a few hours to wait.

It's great to have Angela with you on these occasions as she does like to talk, to which I find this very amusing and at this moment distracting and glad she is just chit-chatting about all kinds of crap!

I then get the call at around 14:15, change into my robe for theatre, rather embarrassingly Angela has to do this up for me, but we have a good old laugh about it, then off to theatre.

As I am wheeled in I am waiting in the designated area and then Dr. B-V, his colleague (whose name escapes me) and the anaesthetist (who doesn't look very happy - long day probably). They wheel me into the operating theatre, I switch beds and the anaesthetist does his stuff and out I go.

An hour and half later I come round, I must admit initially not feeling to good, but get back up to the ward where Angela is waiting for me, this is always the tricky part for me as anaesthetic always makes me very emotional, she gives me a hug and this makes me feel much better, the next instant is like something out of a comedy sketch, there is Angela having to lie on the floor, legs in the air as she is feeling all lightheaded, a nurse walks by and wonders what on earth is going on and I am in so much pain with laughter it's unbelievable, a really funny moment that makes me feel a whole lot better.

They have actually taken three teeth out on the right hand side of my lower jaw, have put the implants in ready for my new teeth once I am over the radiation treatment, so now I have to heal!

Dr. B-V comes up to see me about an hour or so later and explains why he needed to remove the third tooth due to the shape of the root that could cause some problems, sounds reasonable to me??

About 19:25 I discharge myself and go home feeling remarkably well, we get home and Angela puts the kettle on, always good to have a nice cuppa, feeling hungry which is good as I guess I haven't eaten all day so I have some noodles and chicken which is a challenge but get most of it eaten. I Skype Carol and talk through the events of the day and have a serious fit of laughter as I am explaining Angela laying on the floor all lightheaded!! Go off to bed after taken the necessary drugs at about mid-night and get a pretty good nights sleep

Important point on the help and messages of support

Before I get into the initial operation to remove my teeth I thought it appropriate to mention the people I have engaged with and the amazing support that many people have given me.

I start with work - I work for Standard Bank and have come to realise over the past week or two what the "Standard Bank Family" is all about, some amasing people that have shown support at all levels, I have been truly blown away by this and realise that I work for a great firm, with great people. It is the genuine messages you receive that are so incredibly gracious and well meant, I have received many messages from all levels within the bank including a personal message and phone call from Peter Wharton Hood the Group COO, that was very special for me. But they are also looking to employ my daughter Orlanda over the next few months so she can be in South Africa to help me - I can't even start to tell you how grateful to Peter, Elizabeth (our Group Head of HR) and Nick I am, its an immense gesture and one that I will truly pay back when I have recovered, but also from the guys I work with in the management team in Real Estate Services of Marius, Stewart, Rory - they have been fantastic and again I can't even start to tell you how much I appreciate that support.


The team I manage and to which I have only just moved to again have been great, I have been clear to tell them that what I am going to go through and that I am sure I will have some grumpy old Steve moments, but it's not really me (well some people may disagree..lol!) and to bear with me through these dark times. I think they understand this and have been really supportive around this.


Two people I work with particular have just been amasing friends Angela Heward and Nick Riley, with my family in the UK I have been very dependent on them and they have been there for me, amasing friends to have. Angela was with me through the various consulting sessions and was at the hospital with me for my first operation to take out my teeth - thank you!


Of course my family, even though they are thousands of miles away they are there for me, and I have an amasing wife Carol (except when she tells me off for getting ill of course lol!) who is doing all the research possible to help me with what food I should eat, what will be the easiest once the treatment is under way and so on. People in the UK who have had a similar experience that are happy to talk through their own situation - this is also important as the more people you talk to about it the easier I think you become with the diagnosis and the more you feel you can handle/manage whatever it throws at you, especially when you speak or read about people who have come out the other side.

Prof. Syed Haq in London who has helped me understand this illness fully and with the option to use Aimspro (Daval International) in the aid of the side effects of the radiation therapy, but also hopefully the potential to support radiation in reducing the tumour quicker than the 7 weeks expected, I look forward to starting this treatment in London next week. This has the potential to be a truly amasing drug that can help all kinds of people with varying illnesses. I could go on about Aimspro forever, but that is a story for someone else to tell.


To the medical team in South Africa, I have been so impressed with the speed and efficiency of the care I have received  and really feel that I am in good hands. To any potential sufferer it is key that you trust the medical team that are looking after you, I have found the way these guys work, speedily and very efficiently makes the whole dreadful experience a lot more bearable.

Last but not least AXA-PPP my private health care insurance have also put me in touch with Medix and Joey Almog there has been an amasing person to lean on, putting up with my emotions, whilst getting things checked out for me, fully supportive, but also discussing with my wife and "hopefully" putting her mind at rest that I am in good hands?

I finish by re-iterating that it is so important wher you can that you surround your self with a good support structure, a good team on the medical front, because everybody and anything you read will tell you how important this is, don't under estimate it, it will help keep you in a positive frame of mind and remember the only thought you should have is that you are going to WIN this fight!!

So off to the Oral Hygenist for my Caries test

Rock up back to Sabine for my Saliva Caries test, this is impoprtant so they can check your salivery density and acidity. with Radiation therapy in your mouth and neck this kills off the salivery glands so again important to get this checked so they can potentially look at what treatment they may be able to provide you with.

I don't think I can stress the point more than to say make sure your teeth and mouth are in good shape before starting any treatmnet, I think it will certainly benefit me going forward.

Next appointment tomorrow, teeth clean and polish and then off for the operation at Morningside Mediclinic

Meet Dr. Boyes-Varley

I am not to sure how to describe this but I think the only way I can say this is that when you meet Dr. Boyes-Varley you feel you are meeting an eminent surgeon, who is at the top of the league, definitely Premier League, a really great guy and again a no holes barred delivery of the message. He is the guy who is going to take my teeth out and I have every confidence in him doing so.

By the time I have got to see Dr. B-V in my own mind I have decided to have the treatment carried out in SA, I could have options to do this in the UK, but they have been quick, efficient, clear and concise on what needs to get done that I have total confidence that I am in the right place and the right hands.

He explains to me that he will remove the two teeth and why, that I will need 21-28 days to recover before they should start the radiation treatment. He also puts me in touch with a colleague in the UK who he wants me to see (I have planned to travel back to be with my family and friends during the healing process) to 1. check on my mouth and that it is healing, he also wants him to give me the go ahead to return to start treatment, but 2. He recommended to me that I get a second opinion from him.

Again, I am blown away when he tells me that because I am travelling that he will do the operation under GA (General Anaesthetic) on Friday...superb lets get on with it?

I leave him and I think the pressure of the day starts to build and this is where you need for these moments the support around you. You get hit with all this information, good news, bad news, direct in your face non nonsense diagnosis of what you realise is a very serious problem. I phone people at work, my wife and find it all very emotional, I will come onto some of the amazing messages and kind words that have been said to me over the past few days, week and whilst its great to hear, the more you talk about it the more the message sinks in. I think this is a good thing as I believe it helps you shape your mind on how to deal with it, and it has to be positive, you need to ensure you have good people in your medical team and I think I have been fortunate to stumble on one of the best, you are going to need to fight, be tough mentally, don't be afraid to show emotion and know that you will get through this and come out "cured" the other end.

Visit to Dr Dale Howes

Ok, so I didn't even know what a Prosthodontist was until I walked into his rooms, I was again met by a lovely team of people and am being looked after there by Sabine, Angela was busy getting ready for more note taking, Dale is a lovely guy, really caring and supportive. Sabine then takes an x-ray of my jaw, whilst I am in the "chair" Dale is on the phone already looking to get me into see the next person I need to see as part of this diagnosis, treatment journey - you really don't understand the complexities of everything until you get into this type of illness

Angela's notes:

Dentist – Professor Howes

General

-       2 extractions and associated tooth implants

-       Let the implants heal for between 21 – 28 days prior to radiotherapy

-       Implants to be installed a few months after completion of the radiotherapy

-       Caries test required to examine saliva and any antibodies etc prior to commencement of treatment – later today

He then tells me to prepare for the radiation treatment I will need to have two rear mowlers on the right hand side lower jaw removed as this will potentially give me trouble either during or after radiation. My immediate thought is what I paid for my gold cap and the expensive root canal work I had done a number of years ago, but hey!

He also reiterates what the oncologist has told me that this is a very serious cancer, that if you ignore this it will kill you...comforting words but at least you know what you up against. I must say the direct approach the guys in SA give you (well to me) is great, I am a very direct, upfront person, so to get this told to me in the same way helps me massively

He explains how he is going to get me to see a Maxillo-Facial surgeon, again didn't even know what they did until now, and that I should pop over NOW? Wow amasing, so off I go to see Dr. Boyes-Varley.

Meet the Oncologist

So I get back from a fabulous long weekend in Buckinghamshire where I live back in the UK, as well as a great day down in Bournemouth at my daughter Lauren's graduation, she got a BA 2:i which I am very proud of her for...GO Lauren..

Wednesday morning comes around and off I go to the Oncology Clinic, I think the shear thought of going to a place like this scares the shit out of you. I have taken along with me a very good friend of mine who I work with Angela, who is going to capture all the detail for me, I find I can't talk, listen and write at the same time, obviously a male thing about multi-tasking?

I meet with Prof. Bernard Donde, again someone you meet who instantly calms you and who definitely gives you both barrels as to what to expect over the coming weeks as you go through radiation therapy. This is the treatment being recommended for me, although I believe this is the standard treatment for this type of cancer as the success rates are extremely high without re-occurrence - have some of that good news then!

Here we go, in Angela's note form:
Oncologist

Recommended treatment

-       7 weeks of radiotherapy (Mon- Fri)

-       Treatment will comprise mask on face to ensure correct positioning, couple of minutes of radiotherapy and then home

During Treatment - Potential side effects

-       Tiredness (probably increasing as the treatment progresses)

-       Nausea/ vomiting (likely to be fleeting but if prolonged anti sickness drugs are available)

-       Skin reaction (after the 3rd week generally)

o       Only use an electric shaver – not a blade

o       Mild soap (dove)

o       Warm/ cold water (not hot)

o       Pat skin dry – do not rub

o       Stay out of the sun as skin will burn

o       Potential blistering although this is rare

o       Skin will go darker after treatment although this should fade around 3 months after treatment has completed

o       Loss of hair from face/ sideburns (will return after treatment completed)

-       Loss of taste of food (should return around 3 months after completion of treatments)

-       Mucusitus leading to very sore mouth/throat/saliva very thick

-       Potential issues in swallowing

Advice

-       Small meals (little but often)

-       Bland foods (ice cream etc nothing acidic i.e. fruit, tomatoes etc)

-       If too much weight is lost then a stomach tube will be used to feed but keeping to small easily eaten foods should prevent this

-       Invest in a liquidizer so that if swallowing food is difficult it can be liquidized and spoon fed

Long Term effects

-       Salivary gland impairment (dry mouth) although only one side of the face will be affected which is good

-       Dark skin possible

-       Dry mouth can cause dental issues and potentially “jaw death” affecting the jaw bone although this is very rare

-       Narrowing of the Pharynx resulting in swallowing difficulties – very rare

-       Damage to blood vessels in the mouth which means that dental treatment can be very difficult and any wounds won’t heal well

Prognosis

-       Very localized and only on 1 tonsil

-       Very high cure rate on this type of cancer with little re-occurrence

-       Radiotherapy used not just to kill the cancer on the tonsil but also to treat the surrounding area in case of any cells lurking

He then organises for me to go and see a Prosthodontist - like straight away, obviously not in the UK now, with waiting times and the guy is literally 100 metres away!!

The reason for him sending me to them is that it is vitally important that your mouth and teeth are in good order, otherwise post radiation therapy dental work can be very complicated, so please bear this in mind if you find yourself in this situation

So off I go to see Dr. Dale Howes

The results?

So on Tuesday (8th November 2011) I have the call with Prof. Joseph who tells me the diagnosis. This is after a few missed calls and the slip by his receptionist that he wants me to see Prof. Donde at the oncology clinic! That gets your mind running at supersonic levels I can tell you!!

I don't think you can ever prepare yourself for what they say, but I had made up in my own mind that if he was going to tell me the worst case scenario, anything better than that was a bonus..unfortunately he didn't, he told me that it was a malignant tumour on my right tonsil, this is known as a Nasopharyngeal Carcinoma. But, the good news was:

1. how positive he was around getting this sorted out,
2. that we had caught it early and it was very localised, with what seemed like no spread into the lymph system
3. that we would get the treatment underway very quickly
4. They have a very high success rate with radiation therapy on this type of cancer

I was planning to fly back to the UK for my daughters graduation the following day for the weekend so we planned the treatment for this week, we organised the visit to Prof. Bernard Donde at the Sandton Oncology Clinic for the 16th November and off I went to London for a wonderful weekend watching my daughter graduate from Bournemouth University.

Obviously, by this time I had told the people at work, who have been absolutley amasing, very supportive without really knowing the full context of what I was about to go through, you will in future posts start to see names come up of people who I am truly blessed to work with.

I also told my wife, which I can tell you now is very emotional, but it is vitally important to be clear and honest with your partner, they will become your rock! I am very fortunate to have a beautiful, strong woman by my side, although she did give me loads of grief about being ill and that it wasn't acceptable, she was going to write me a strongly worded letter!! LOL!

What makes this more difficult for me is that I work in South Africa and my family all still live in the UK - skype is amasing btw!! She then told my children, I am blessed to have 4 wondeful kids, Lauren, Orlanda, Kendal and Bradley. It is really important that you get a good support system around you, because as you will see in the next few blogs as information unfolds there are some dark times ahead

Meet with Prof. Joseph

I don't think I have ever walked into a doctors rooms and felt more at ease and confident that I was in the right place - Prof Joseph is the real deal, a lovely man and obviously a leader in his specialised area.

He quickly sat me down, had a good old look in the mouth and before the local anesthetic has a chance to work had taken a biopsy OUCH! can still feel that....he was very clear with me in terms of what this lump probably was, again told me very clearly and concisely what the potential options would be and depending on the outcome of the biopsy and the scans what the way forward would be. I think to be honest there and then he knew what the deal was, obviously he needed to check it and get the results back though.

He then organised an appointment for me to go for a CT Scan and various other tests which I got done that afternoon, this also included an iodine scan and an ultrasound. Talking to the ultrasound doctor he, I guess gave me the first bits of good news, that it was very localised, what they determine as a T1 growth and that my lymph system didn't seem to have been infiltrated, which is a key carrier for cancer.

I just needed to wait for the results!!!