“You are on the pathway now, where we make progress based on days and week, and not months”. The date was Monday 9th May, and the voice uttering these words was responding to a question I had posed, which was, “what happens now?”
The “pathway” that was being described was not some obscure footpath, a tributary of the beloved SW Coast Path I sometimes walk. No this was a “Pathway” that many who may read this will be familiar with – it’s the NHS Cancer Pathway. It’s the mechanism the NHS use for patients diagnosed with cancer. And Monday 9th May was when I sat with Jayne and listened to the Consultant breaking the news that nobody wants to hear.
Today is Wednesday 7th September, some four months has passed since that day. It’s the first time I have attempted to “write anything”, but with the sun shining through the bedroom window, perhaps it’s an opportune time to reflect on part of my journey in “along that pathway”.
Whilst its easy to pick up and read many articles how our beloved NHS is struggling, positive life experiences, even those like this one which will not have a “happy ending”, are less visible. I had gone to the caravan for the weekend, leaving the wife at home struggling on how she had managed to get COVID after escaping it for so long. When I returned on Monday 25th April, I explained to her that I having trouble consuming all my food, with my stomach seeming to get “full” very quick. I hadn’t even managed to drink a bottle of Butcombe that I had taken with me! Under instruction I contacted my local Health Centre, with no real hope of getting an appointment to see anyone. Much to my surprise I was given a same-day appointment with a Doctor, a “Locum”. Within a week I was having an Upper GI Endoscopy at the local South Bristol Hospital, and a week after that I was sat in a Clinic at the Bristol Royal Infirmary. During the days between seeing the Doctor and having the endoscopy I was becoming very aware that my condition appeared to be worsening. As well as having to reduce hugely what I was able to eat, I was suffering huge indigestion/reflux issues.
As well as the Consultant there was also a Specialist Nurse in attendance at that initial meeting with Jayne
and I, and it was the nurse spent some time with us reiterating “the facts”, what they knew and what had yet to be confirmed. Having someone accompany you at this type of meeting is absolutely essential, as I sat listening intensely to what was being said I was well aware that I was struggling to “take it all in”, and there was a danger of me not retaining key elements. Having used the words “Linitis Plastica” and being told “not to focus on them” by the Consultant I was desperately trying to remind myself of them and trying to fathom out “why I shouldn’t focus on them”. So much so that neither of us could remember those words when we left the hospital an hour or so later. What we did have was a “plan”, and that plan was very much about what I should and should not be eating in the days and weeks ahead as they progressed the investigation along the pathway.
We stopped for coffee, I turned to Jayne and asked “Well, what do you think?”. Her reply was succinct – “they are 95% confident you have stomach cancer”,
5% uncertainty isn’t a lot – unless of course you are talking about a life or possible death situation, and then that 5% is “everything”, and of course it allows you to introduce that magical three lettered word from the English Dictionary “but”. “But” allows us to introduce doubt and hope in equal proportion. “But” they haven’t finished their tests. “But” you cannot be 100% sure that is the case.
“But” is the word that prevents you facing the harsh realities that life can sometimes throw at you.
In the weeks that followed that first meeting the NHS machine moved steadily forward, the appointments came and went and we began the whole process of communicating what needs to be communicated to those closest to us. We were constantly reminded of the advice we were receiving from the NHS experts, such as “save your energy for the things that are important to you, not others”.” Prioritise what’s important to you and use the limited energy you have for those things.”
There were and are still “OK days” and “bad days” – with the bad days being “bad”. Coping with the loss of my physical and sometimes mental strength has been something really difficult to cope with. There have been two periods of hospitilisation and it was during the second one of these of nine days that we were given the answer to that missing 5%. A CT scan had shown I had a blood clot on my lungs to compound everything but that the cancer had not spread at that point. This was positive news and even with a warning that cancer of this type normally would normally require surgery and chemotherapy we had given ourselves hope. “Hope” is something you unfortunately hang on to by your finger-tips, and yes, we understood they wanted to do more tests, but we did have “hope”. A subsequent sectioning laparoscopy, a procedure involving cameras and “tools” being inserted into your body quickly wiped those few drops of hope away. It was Tuesday 21st June when Jayne and I sat with another member of the Upper GI Team to hear the words “I’m sorry, the cancer has spread, there is no treatment we can offer as a cure”.
We did what most couples would have done in this situation – and that was to weep in each-other’s arms. How do ever come to terms with such news? Looking back to my dad’s death in 1996 at the age of 70years of age I remember thinking “yes, he was fit, he didn’t smoke and didn’t drink, he had potentially twenty years ahead of him, but he was 70! How do you get a prospective on age – when I was a kid a lifetime used to be referred to as “three score years and ten” (which makes seventy). But I’m only 69, and was planning to live another twenty years at least. My sister was only 45 years of age when he succumbed to the big “C”.
Our focus since that fateful day has been to focus on living. I refuse to use any emotional energy on feeling sorry for myself, but that does remain a challenge, for all of us as a family. Keeping a degree of normality around our lives has been a requisite of coping. This home of ours is a “family house” with noise, laughter and tears of playing grandchildren reverberating around the walls on a daily basis. They now “grandad” isn’t very well, and has a tube connected to his arm which stops him “charging around the garden”, but that’s the limit. Of course, experience has told us all those children are very astute, they pick up on body language and many have ears like bats, tuning in quickly to what they probably shouldn’t be listening to, so we remain guarded with our conversations.
The wonder that our is our NHS system ensures that I am getting the best of care, supported by our brilliant local District Nurse Team, St. Peters Hospice and organisations like the McMillian Trust.
Because of the type of cancer and its location I have been unable to do many of the things that we have learned to enjoy over recent years – like enjoying a nice meal and a bottle of wine. I am unable to walk unaided and need a wheel chair. I have no “energy”, and spend a lot of time resting/sleeping, which restricts visitors.
My love of writing has been put on the back burner for a couple of reasons. Firstly, I very rarely have the energy to engage in meaningful conversation, let alone write. Secondly, there are those that would say that by writing about my experience (to date) I am attempting to extract sympathy from others for my condition. I can assure you that “sympathy” is the last thing I, or those closest to me need, but it remains a risk.
It would be pretty unique to find someone who reads this blog who has not themselves been impacted by cancer. Mine is not a unique experience – there are I am sure thousands ging through the same thing at this very moment in time.
The biggest challenge has, and continues to be, the daily/weekly challenges that we face. The Pathway was short – and we have now moved on to the care of the Palliative Care Team.
Next Time: Palliative Care and the reality of what it means.