I have been introduced to a dietician by a friend who has been through the same issues that I am now in the midst of. I have been discovering that diet will play a key part in the my recovery and should ultimately be a factor in how all preventative therapies are framed. This as you can imagine is a contentious issue as it is my understanding in the 5+ years of medical training our doctors receive 2 days of diet and nutrition instruction!! More on that at a later date.

I have sent a copy of a couple of weeks of my diet over the last month or so. It shows that I have already embraced change, critical factors being no refined sugar, in fact only sugars from fruit and veg. I have been told that cancer cells will consume sugar at 6 times the rate of other cells! I have given up dairy and alcohol and have started drinking 2-3 green juices per day. Finally we are reviewing what meats I can eat thinking that it is likely that only occasional chicken and spring lamb will make the cut! At this stage I am doing all of this to aid my recovery. My view on the long term adoption of this regime are somewhat different!

We have a Skype call with Julie and she goes through all of the information I have given her. She is very complimentary about the steps I have taken and has some comments on a couple of things. In the plus pool is she doesn’t believe I need to give up dairy as this can have some benefits for colorectal cancers. Also in the plus pool is that grass fed beef, and venison are ok.

I get to the end of the call and haven’t mentioned the big one……and what about alcohol going forward I timidly ask? Blunt as you like comes back the reply …….never…… you should not drink alcohol ever again!

Well my former nutritionalist and I agree to a couple of actions and go off to reflect on what this will mean in the future. After all red wine has a lot of polyphenols in it so it must be good surely.

I have been introduced to a couple of professionals ( not sure yet exactly how best to describe them) in London by a very good friend of Alex, my son. I have been told that the methods they adopt will give me the best chance of preparing my body to beat and then make sure the cancer is kept at bay in the future. I have a call with them this evening to understand exactly how this will all work.

The call starts late but is a run through of exactly what my current position is, the changes that I have made to my diet and exercise regimes and a brief run through of my recent history. They confirm that these are all good steps to help with the regime that in their view will be critical to a successful outcome.

The upshot of the call is that we will meet in London on the 16th of April (Day 49). Before that they are going to send me 16 forms to fill in!!

All will be revealed after the meeting!!

It has been 37 days from the date of my diagnosis and we seem to have covered a lot of ground already. It is just worth pausing a putting a little context around how we got to be here.

I was due to donate a kidney to my wife who is a PKD sufferer on the 12th March It is the most common hereditary disease affecting 12.4 million people worldwide, the US alone there are over 600,000 who have the disease. I had spent the last 2 years having multiple blood tests and a whole host of scans and checks to make sure that I was fit enough and had the high levels of kidney function to allow such a process to proceed.

Whilst my kidney was an acceptable match for a direct transplant to Lou, we had decided to join the kidney paired donor service. In essence my kidney becomes available to donate to the pool and Lou becomes available to receive from the pool. The pool is around 350 couples every quarter that are looking for a better match than the one they have with their partner.

When someone is diagnosed with cancer this automatically makes them ineligible to remain in the paired pooling scheme. The tragedy of this was not only the fact that Lou was 2 weeks from a significant change in her life but a number of other couples were affected as well.

As with every knock back Lou has received over the last few years she was truly amazing. Her main thoughts and concerns were for my health and how we rid me of this disease. A super star as always.

There are increasing thoughts that cancers can be triggered by traumatic events. Over the last 3 years a number of events have struck our lives. In December 2015 my business partner took his own life. A brilliant man who was bipolar and for the previous 12 months found it increasingly difficult to reconcile the demons that stalked him. We have spent the last 3 years managing and administering his estate.

On the 24th August 2016 my brother and his wife were tragically killed in the earthquake in Amatrice in central Italy. My sister in law’s sister and I went to Italy to collect my niece and nephew who had been orphaned in the tragedy. Having brought them to Rieti a town an hour away from the earthquake I returned on the 25th to identify my brother and sister in law in make shift tented morgues with the 300 other bodies. Sights and sounds I will never forget.

Four days into the chemo, I am now starting to rattle!! I have four chemo pills, four anti nausea and two additional anti nausea pills in the morning and then four chemo, and two anti nausea pills in the evening. This has been for the last four days. Well the good news is that they all seem to be working, no nausea and very few side effects to date.

I was forewarned that I could be violently sick, I could have mouth ulcers, I could lose my ability to taste or at least have a metallic taste in my mouth. So far none of these have materialised and the only side effect that I have had is a tingling in my fingers when they get cold. This has manifested itself when I am out walking the dogs and when I wash my hands in cold water. I also have to take anything out of the fridge wearing a pair of gloves. Fortunately this type of chemo means there is only a small chance of me loosing my hair …..???!!!!!

Slightly apprehensive today as much has been talked about how horrendous chemotherapy can be. I am very fortunate that I have private medical insurance which has enabled me to have my chemo from home. A blessing indeed as the Lloyds Pharmacy Homecare Oncology nurses are a delight.

Two boxes are delivered via courier at 7am sharp. Sam then arrives laden with kit, IV stands, boxes of equipment, a defibrillator and oxygen just in case! It takes about 20 mins to set up. My chemo is a mixture of 2 drugs one administered intravenously on the first Thursday and then orally twice a day for 2 weeks. After that I have a week off for my body to regain some of its immune system and to make sure that it is able to cope with the rigours of chemo.

Sam then sets about prepping me for the canular and the first of the various drips to be administered. The first is a saline solution to make sure the IV is working properly and that there are no adverse reactions to the process. All good! The second is a 40 minute anti nausea drug which is designed to make sure that I am able to have a reasonably comfortable time dealing with the chemo drugs……..the next few days will see if this works or not. Finally I have the chemo drug itself. This is dripped in over an hour and 45 minutes. The whole process takes about 3 hours. Now to find out how my body will react to the process………

Chemo starts on Thursday the 28th March so we have taken a couple of days to do the last ski of the season in Samoens. What a great weekend we picked blue skies and still plenty of snow. Lovely to have Al, Otts, Tourie and Sam with us as well, a special time.

Whilst all the medics have been poking and prodding, scanning and MRIing we in the background have been researching to find out what things we can be doing to help to get through this ordeal as affectively as possible.

I decided quite early on to ignore what stage I am and what the prognosis is because in the end the only stat that matters is the John Gotley stat. That stat is going to be ‘success’ because of all the things I am doing and will continue to do that will help me succeed.

I have been having acupuncture from Sally Connelly in Cheltenham who is a superstar. At the end of one of the sessions she asked if we had watched ‘Heal’. It is a Netflix documentary that interviews a number of people that deploy techniques to help cancer sufferers heal. It is American so don’t be too surprised that the God Conduit and the Music Wizard didn’t resonate with me! It is fair that they have their role with some but it is difficult to see the science in what they do. To be clear, for me to believe, I need to see the path is scientifically based and makes common sense. NO running naked through fields smoking wacky backy. (maybe 35 years ago but not now!)

Two people did resonate with me more that the rest and they are certainly part of my plan.

The first person is Dr David Hamilton. He was a chemist who worked for a big pharmaceutical company designing and testing new cancer treatments. When they did the trials they were getting c75% success but extraordinarily the placebo group were achieving 40-65% success rates, this is what started to interest him. He left and has spent the last 15 years developing and refining the placebo effect. This is a methodology which harnessing the mind to help the body cure many different types of disease. He has developed a series of 28 short lectures that explain his solution. They are on his website under Placebo School. www.drdavidhamilton.com

You can see a number of his lectures on YouTube that give a pretty good idea as well

The second is a book by Kelly Turner, PhD who is the New York Times bestselling author of Radical Remission: Surviving Cancer Against All Odds which summarises her research into the radical remission of cancer – when someone heals from cancer without Western medicine or after Western medicine has failed.. Over the past decade, she has conducted research in 10 different countries and analysed over 1,500 cases of radical remission. In each of the cases that she talks about, these people did many things to try and stop the seemingly inevitable. There were 9 things though that were common to the vast majority of them. Her book goes through them one by one. In addition she has a series of lectures on line www.Kelly-Turner.com that you can buy if the book resonates. Her website has the course and you can buy the book on Amazon.

These are two of the protagonists in my story however the best is yet to come…..!

Today I have met my oncologist for the first time. His name is Dr Nick Reed. He goes through the plan for the chemo over the next 12 weeks. The plan is to have 4 cycles of 3 weeks at a time. It will start with an intravenous drip for 3 hours followed by pills both morning and evening for the next 14 days. I then have a week off before the cycle starts again. Concerns are that there are often side effects that range from nausea to headaches and in some extreme cases a variant of sepsis. It is very important that I manage my time and body to keep as healthy as possible.

On to the couple of tests on my thyroid. The first is an ultrasound on my neck to see what the pet scan light that lit up on my neck is. It appears to be an 8mm nodule in my neck. Dr Hopkinson, the man in charge of the ultrasound, is keen to find out a bit more so prepares for a needle biopsy. This is when he takes a tiny sample of the nodule to be sent off to the path lab to be tested. His view is that it is likely to be 1 in 3 that it is cancerous. So a local anaesthetic is administered and a needle inserted to take a sample for the biopsy. As I have a phobia of needles and have been known to feint the moment one comes anywhere near my head it is a miracle that he wasn’t picking me up off the floor as I spark out. This is avoided and the biopsy is successful and the sample sent of to be tested.

The final session that afternoon is with the Ear Nose and Throat consultant one Charlie Hall. A very jolly chap who reiterates that the thyroid nodule is not likely to be cancerous but if it was would be fairly easily remedied. It will not be done until the tumour in my bowel is sorted in any event.

So what had seemed to Lou and I like another huge concerns seems to be a secondary issue for the cohort of consultants.

Onwards and upwards

We met Damian Glancy our cheltenham based consultant today to get confirmation of the results and to plan the next steps.

He confirmed the plan that Malcolm Wilson in Manchester had suggested as the most likely. He also touched on the thyroid and suggested that I have an ultrasound to find out what that is. In 70% of cases it is not cancerous but they need to be sure.

More tests! So an ultrasound and a session with my oncologist has been arranged for Thursday, the day after tomorrow.

A plan is starting to take shape!!

Well both MRI and Pet scan are completed. The pet scan by the way is where a a very small amount of radioactive material is added to a drip of glucose and passed around the body. The cancerous cells feast on the glucose and the radioactive material lights up the ‘nasty’ cells on the scan.

On Day 16 Mr Glancy calls to give me an update from the MDT. The MDT is the multidisciplinary team meeting where around 20 consultants, oncologists, radiographers nurses and doctors get together to discuss the best way forward for each patient under their care. Undoubtedly a very sensible process that ensures the best outcome in a very high percentage of cases. He hasn’t had the update from the pet scan but the MRI shows that the liver lesions are benign, a huge relief as this would be pretty grim if not.

Back to day 17. As part of our due diligence to assess the best place to manage my condition we were introduced to Malcolm Wilson at the Christie by Ottie’s boyfriend’s father, ‘Skip’ Butterworth. Malcolm is the Lead Clinician for Colorectal Cancer at the Christie in Manchester. The Christie is arguably the no 1 cancer centre in Europe. Not a bad bloke to know!!

An excellent meeting with Malcolm gave us a much clearer picture of the full extent of the issue and the way it is to be managed. He talked us through each of of the scans and MRI results. The Cheltenham team had ensured that they provided all notes and scan results for our consultation.

So the various scans have shown a clear picture of a tumour at the lower end of the rectum which ‘lit up’ like the Blackpool Tower, there are also a couple of involved lymph nodes in this area. In addition there are 2 additional lymph nodes just outside the area that also have signs of being involved. Finally a rather rogue light has shown up in my thyroid. This is almost certainly not related to the tumour but also needs to be assessed!

The view from Mr Wilson is that in his opinion having only just had sight of the information, I will require 3 months of chemo to clear the ‘nasty’ cells from the body, followed by 5 weeks radiotherapy to reduce the size of the tumour which will allow for surgery to remove the tumour and the lymph nodes next to it. All in all an 8-10 month process to recovery assuming all goes to plan.

Mr Wilson was at pains to say that all the information and process followed by the Cheltenham team had been exactly as he would have done and felt that there was no reason to drive 150 miles each way to the Christie in the future to follow an identical path.

We both drove home from Manchester with positive thoughts in our heads which was a great start to the weekend!