This week has without doubt been a full on reintroduction to the chemo regime and what it does the body. I anticipated it being a ‘restart’, but has not made the physical reality any easier. Rather than go into detail of the side effects suffered, which will read like a repeat of the first 3 cycles, I will just highlight the main impacts.

Appetite loss / ‘return of the cardboard’, various body pain, more new ‘15 minute intense switches’, tiredness / lethargy and the sensitive feet soles are amongst the most prevalent side effects, but there are others.

One key aspect that has really stood out this week is the appetite coupled with side effects to my mouth, tongue and oesophagus. Previously, to counteract the loss of appetite, I switched to more spicy and stronger tasting food. However, this has caused me issues during the past week, which has worsened as the week went on, with a burning sensation in the sides of my mouth at times, plus soreness on my oesophagus. We sorted one of our favourite chinese carry-out meals for Saturday evening, which we have not had for more than a month and I was really looking forward to it. However, the reality of trying to eat it became very challenging, both physically (the sensations mentioned above, but also psychological. The necessity to eat and maintain weight / help fuel the body during this disease is of high importance and having already had a bought of weight loss, I have adjusted to the point where I am eating for function, but without much taste. I became very conscious at the tail end of forcing the final 2 fork fulls of food into me, that I have to, at times, study what if about to go into my mouth and psyche myself up to make myself eat it. That realisation resulted in a surge of emotion. It is one of the most basic human needs that is essential to us staying alive, but at the moment, one of my biggest challenges. The physical and mental aspects of that challenge are draining in themselves.

The final day of the week, which was Father’s Day in the UK, did not have us with many plans in place. I had seen my daughter and her family on the Saturday and sorted pressies and cards then, so that she could have her family father’s day on the Sunday. We were due to have my son and his fiancé with us on the Sunday for a bit. However, not long after waking up early in the morning, Sandra noted that I was hot and took my temperature, which read 38. Trying to learn from before, take on the very clear medical advice, but not panic, I had some breakfast and got ready, then took the temperature again, which read 36.7. We decided to check it hourly. 40 minutes later, we retook it and it read 38 again, so we went to our local A&E department.

I did not have long to wait, due to being a ‘priority risk’ and during the start of the assessment, which was an ECG, then bloods, I had another ‘15-minute switch’ session, where I started to very very tired and uncomfortable. As they were literally in the middle of taking the various vials of blood from me, as this was rapidly unfolding, they took my blood pressure, which was very low. When I first arrived, about 15-20 minutes previous, it was running high, alongside the high temperature (still hovering around 38). Part of this intense ‘15-minute switch’ involved the need to go to the toilet (not the first instance of this). The doctor, who was waiting to talk to me and begin his assessments, was courteous enough to wait. However, when I was ready to see him, things had moved on. I was moved to a different area and there began various tests and fluid introductions; antibiotics, paracetamol, fluid replacement drips, alongside blood pressure and temperature checks, whilst they awaited the results of the various blood analysis. The result of all of that was the decision to admit me into hospital, mainly due to my Neutrophils showing a zero count. They are the white blood cells and essential to how we all fight infections and rebuild our bodies after injury. Due to my immune system being non-existent (chemo) and the suspicion of infection from what they could see during Sunday’s tests, that drove their decision. They will keep me admitted until that count reaches at least 1, which will hopefully be in the next 24-hours.

That decision on their part, which is absolutely the right thing to do (and we certainly made the right decision to hot foot it to the hospital). The psychological challenge that presented has been multi-faceted. Up to receiving this diagnosis, I have spent only 1 night in hospital and historically, I do not visit doctors often and have had virtually zero need to take medication. Like pretty much all of us, I do not like hospitals, nor having to go to them. To be told that I was being admitted was very hard to hear. Besides the obvious short term annoyance, it is a new ‘milestone’ to reach with this disease, where my body is continuing its descent towards the final outcome and I can do nothing about it; a very tough and emotional day.

Certainly not the Father’s Day I was hoping for and the entire weekend seen my emotions on a rollercoaster ride, with me breaking down a few times. The ‘food battle’ and Father’s Day drove the initial instances, as the words in the cards from Sandra, my children and the grandchildren take on a much more poignant and significant level, against the backdrop of the cancer. Sunday added to that mix……..

Going back to last week, I posed a ‘thought process’ for those of you reading this and that has certainly generated a number of comments. Thanks to everyone who took the time to contact me and share their thoughts on that, alongside your public comments, appreciated.

I posed that same ‘thought process’ to those closest to me: Sandra, Alanna, Karl and my sister Susan. I left the decision as to whether they wanted to put anything in writing with them. Although Sandra started hers, the emotions took over, so that will be a ‘work in progress’ and something I will share when ready. The one that I will share with you this week, is from my daughter Alanna, which reads:

'When it comes to having advanced warning of the death of a loved one, it feels like a double-edged sword. The pro is obviously that you have more time, and you get a chance to make the memories you want to make before you don't have a choice anymore. The con is that you have to watch someone you love suffer, and fade away piece by piece. I'm very conscious of the fact that I'm going to have to see my dad in an incredibly ill and fragile state, and those are memories that no one wants to have of their loved ones.

One added benefit of knowing ahead of time, from my point of view, is that I've been given the time to prepare my kids for the loss of a grandparent. I was only a year older than my now 5 year old son when I first lost a grandparent, and it happened with such speed that none of the grown-ups had any time to wrap their heads around it, let alone start to explain it to their kids. The same thing happened again when I was 12 and lost my second grandparent - I was old enough to understand she was dying but it happened so quickly that processing it was impossible. They are traumas that still live with me to this day, so I'm thankful that I have time to make this process slightly less traumatic for my kids. My 5 year old knows what is going on and we've explained it to him as honestly as we can while keeping it in language that he can make sense of; he knows that his Pops is on strong medication that makes him tired and has taken away his hair, and he knows that Pops is going to die sooner than we expected. I hope we get enough time with Dad for my 1 year old to get a point where she is able to understand what is happening, and we will be as honest with her as we have been with her brother. We're hoping that we can make it so that the inevitable end brings sadness, but not a shock.

In terms of processing things myself, I'm choosing to focus on practicalities right now and leave as much of the grieving process as possible for the day when he's not around anymore. I don't want to spend whatever time we have left grieving him when he's still here, it feels like a terrible waste. But, of course, it seeps into everyday life despite my best efforts. It's triggered a spike in my ongoing anxiety and brings waves of sadness when I least expect them. I also spent a whole month feeling very deflated and struggling to find motivation to do anything other than the bare minimum. It's hard not to feel helpless.

On a more positive note, I have found that I'm more conscious of the time I spend with both of my parents - because I'm aware that I'm helpless to help both of my parents right now; my dad may be the one with the illness, but my mum is as much in it as he is - hugs last longer, more photos are taken, videos are recorded, conversations have become deeper (quite an achievement in our family) and time just feels more special than it did before, even when we're doing something normal like having lunch together.

To answer the question posed, while there are some hard times ahead as a result of knowing what's coming for us, and I'm going to have memories of my dad that I don't want to have, I would choose that over a sudden death every time. Knowing ahead of time means that not only do we get to say a proper goodbye, we get to say it in the way that we want to. I've already had a moment with my dad that will stay with me for the rest of my life as a result of this diagnosis. I've never doubted my dad's love for me, but he's always had a very strong, productive career running alongside his family life and has a lot to be proud of, so the question of what he considered to be his legacy was very open to interpretation. When we got talking about how he felt about his diagnosis, he confirmed that the only legacy he cares about leaving behind is his kids. Like I say, I never doubted that we were front and centre in his life, but it was lovely to hear him talk about us so effusively when facing the end of his life. It confirmed my lifelong belief that the only thing that really matters in life is your family (biological, created or chosen). A sudden death would have robbed us of that moment, and many more that I'm sure are to come.

I will take any time I can with my dad, in whatever form it comes. I know he's conscious of the fact that we will all become his carers for a period of time, and it's not something he's happy with, but I will happily take on that role if it means more time with him. Knowing ahead of time is tough, but it's given us the opportunity to make the most of what we truly value - each other.'

I will draw this lengthy update to an end now (I will post my sister’s thoughts next week). Thanks for the ongoing interest, increasing levels of two-way commentary and general reception of this concept; deeply appreciated.