The Power of Positivity

The Human Body is a wonderful thing...

Having had a period of some 6 weeks without any chemo treatments, I was understandably nervous as to what might happen with the tumours in that time. I had my third set of scans on Tuesday this week (17 June) and as I have outlined previously, there were 3 possible outcomes, a bit like a ‘traffic light’: -

Red - Things have deteriorated and the cancer is more widespread

Amber- Things have remained at a similar level as detected on past scans

Green - Things have improved on the situation shown in past scans

I had an appointment with my Oncologist today (Thursday 19 June) and I am delighted to say the scan results were GREEN with the scans showing a continuing improvement in my response to treatment.

Whilst the ‘recovery period’ may not appeared to have worked as well as I was hoping with the cumulative effects of the chemo toxicity causing me to have some unpleasant and debilitating side effects – the results were better than I was anticipating. The disease in the liver has continued to reduce and the primary cancer in my Oesophagus is now so small it is almost undetectable, and the Oesophagus itself is now pretty much normal. There is no further growth of the deposit in my shoulder which is now stable, and no evidence of the cancer having spread to other parts of my body.

The immunotherapy treatment is not like the chemotherapy, which tends to pass through the body pretty quickly in a matter of hours killing cancer cells and potentially damaging other cells on its way. The effects of the immuno last over a much longer period, potentially months, and effectively ‘switches on’ and triggers the body to seek out and destroy cancer cells – thus the body is doing the work rather than chemicals and medication.

My oncologist wants to ‘up regulate’ my immune system whilst my Gastro consultant wants to ‘down regulate’ my immune system – hence the conflict between Cancer and my Ulcerative Colitis.

The 2 Consultants will now liaise to try and find the middle ground. I need to get off the steroids and back onto a biologic medication and certainly taking steroids long term is not a good idea. The bruising on my arms is almost certainly a side effect of the steroids that I am taking as I try to get the UC flare under control. Also getting off steroids means that I would be able to return to a glass of full fat wine – I can almost taste the glass of Chateau Neuf Du Pap now…

We need to react to how the cancer is behaving and currently it is still reacting to the Nivolumab (immuno medication) which is excellent and there may be further improvements to come. It was described as turning the volume up and down on my immune system. It maybe that we need to return to Nivolumab again in the future to further stimulate my immune system – but that would not be of benefit at this particular moment in time. So the message from my oncologist was

‘see you in 2 months’ time when we can do another set of scans – enjoy a summer free from cancer treatment’

There is no point in continuing take paracetamol for a headache when the headache has gone. Also returning to Nivolumab may affect my colon and bowels again which we are now hopefully going to try and get back on track with a new UC biologic medication. The longer we can keep my body doing the work rather than medication – the better. It would appear that my disease is hopefully a longer time respondent as opposed to being aggressive. In many ways we are dictated to by the disease and how it reacts and responds and of course this is complicated by the UC. If you consider 2 televisions, one showing the BBC and one showing the ITV – thus rivals and both seeking your attention. It is question of trying to get the balance of volume to ensure that you can effectively concentrate on both in a ‘balanced’ way with both getting your equal amount of attention.

Regarding the other significant side effect that has been an issue over the past 6-8 weeks - the peripheral neuropathy. The fact that this has really manifested itself since I came off the chemo is potentially a sign that the nerve endings are trying to repair themselves now that they are no longer being affected by the chemo medication. It is mainly a matter of time in the hope that it will start to improve. There are medications that could assist – but they may have other side effects – so best to hold off at this stage and see how the body heals itself.

I also started a course of acupuncture and physiotherapy today and this is designed to help get rid of the neuropathy and get my hands and feet, fingers and toes back to some sort of normality. Recent studies have shown that physical exercise has a massive positive effect on reducing cancer tumours and fighting the disease. Whilst I have been trying to carry on with some endurance exercise (golf, walking, aqua aerobics) it is now time to start some serious strength work and to build up my muscle mass that has deteriorated so badly. My physio set me a series of exercises and is hoping that within a few weeks I will feel the benefit and be able to walk further, start cycling again and eventually play a round of golf without having to resort to using a golf buggy.

Apparently, the hair on my legs will eventually grow back – so only a short-term reduction in the need to ‘wax’.

Needless to say, I am thrilled at the way my treatments have worked to date and I am so grateful for the incredible messages of love and support that have come my way from family, friends and colleagues. I am convinced that this out pouring has kept me positive and there can be no doubt that a strong positive mental attitude has been instrumental in ensuring that I keep on fighting this disease and to date this has manifested amazing results.

THANK YOU SO MUCH – PLEASE KEEP THE POSITIVE VIBES AND ENERGY FLOWING