My first experience of the words “palliative care” would have been back in 1996, when my father was dying of cancer. And so when the Consultant used the term at our meeting at the end of July I was fully aware of the implications of what he was saying. My cancer had progressed to a state where there were no medical treatments that would provide a cure – this cancer would bring about an early exit from this earth for me. Death does not escape any of us, however, my intention and I am sure that of many of you reading this would agree, would be to have a lengthy spell of living as possible. All our dreams and hopes for the future had been eroded in a space of just a few seconds.
As we sat hand in hand, it took just seconds for the emotions to take over, and we wept in each other’s arms. Preparing yourself for this type of conversation is pretty much impossible. After all, and I refer back to my previous blog, the words “but” and “hope” remain firmly entrenched at the forefront of your mind, forcing you to hang on to any slender hope that things will all turn out fine in the end. The consultant continued the conversation, allowing us both to regain our composure, and then briefly, and I mean “briefly”, went through “what happens next”, with the Specialist Nurse that was with us all. I stress “briefly” because there was absolutely no point in attempting to give us to much information at that point having been given the diagnosis we had done.
In years gone by I’m sure that palliative care would have been vastly different to what is available or provided now. My Dad’s care was about making his life as comfortable as possible for the rest of the time that he had, as treatments to aid symptom control were probably limited to what is available now. We left that consultant room in the BRI that morning and headed up to Floor 9, where there is a Restaurant overlooking the city, and that’s where we commenced our conversation around what we would like going forward. For me you can split most things into two parts – that which you can control or influence, and that what you can’t. These two things came out of a number of personal counselling sessions I had some twenty years ago, as a consequence of a partial breakdown I had. This illness was going to kill me and there was nothing I could do to influence that. However, I did have “time”, maybe just six months, could be longer or could be less – but TIME was still available to me and I could still influence how I spent it.
As we returned to the ward some 30minutes later it was very obvious that all the staff that had been dealing with my care up to that point were fully aware of the diagnosis I had been given. Every effort had been put in place to ensure that I was returning to team of people who were focussed on my well-being, and had ALL the up-to-date information. As Jayne left me to go and do the dreaded telephone calls, I sat on the side of the bed trying to get my head around it all.
Trust is such an important part of my life, without it there me isn’t any real foundation for a relationship. This applies throughout life – from personal relationships, to work and even family. I was soon joined by people from the BRI Palliative Care Team who had the role of explaining the “what next”.
Establishing “what your needs will be” and discussing the thorny issue of “how and where do you want to spend your final days” are essential if you are going to give those involved in your care the best opportunity to meet those requirements. To enable this to happen you have to be prepared to be completely open and honest in all your discussions, and often having to repeat them multiple times.
It’s impossible to judge in advance the level of personal care that you may require at the end of your life. Having experienced the challenges of proving home care, and seeing care being provided in a hospital or Nursing Home setting I remained of the opinion that I didn’t want to die at home. Having said that, it is our intention as a family for me to remain at home for as long as possible. Our home is a “family home” built over many years, with the sound of children’s laughter echoing throughout its walls, and the sound of screams of joy coming from the garden. As I write this the grandchildren are in acceptance that Grandad isn’t well, is confined to the bedroom and that Nurses come in to see him. That is a vastly different scenario than having to disrupt the whole house to accommodate a hospital bed, and having multiple visits throughout the day by care professionals.
In the early days of being discharged from hospital there were numerous calls from different agencies. This is because I had been formally “discharged” from the hospital on the grounds there was nothing they can further do for me and had been passed to the PC (Palliative Care) Team. An outpatient’s appointment was being made for me at the Oncology Department, purely to see if there were any available treatments that would “aid” symptom control. I stress “aid” and not cure. The St Peter’s Hospice had taken the lead on my care and it was their representative (a designated nurse) who visited just a couple of days later. I commenced my PC a journey with a daily visit from a District Nurse from the Community Care Team, whose job it was to change the drugs in the syringe that was permanently connected to my body.
I suppose the most important thing I have learned so far along this PC journey is to once again trust the information and guidance you are being given. On being discharged form the BRI I was reasonably mobile – but we listened to what we were being told and purchased a wheelchair. This would allow me to get out and about further afield, and we did. I attempted to eat what I was being advised to eat – and generally followed the guidelines I was being given. However, you begin to understand quite quickly that “cancer has a mind of its own”, and often takes a path a you are not expecting, throwing all your plans into complete disarray. The trouble is you don’t “understand” this at the time and start looking for alternative reasons in why your body is reacting in the way it is. Was it something you ate or drunk? Did you just overdo it today and not rest enough? Suddenly the things that you though you could in someways control and get some enjoyment form see:to be slipping away.
Knowing who to access for help is essential, and in the early days after being discharged form the BRI was difficult as my Care Plan hadn’t been completed so therefore not visible to those who may need it. In reality what happens is there a seamless interaction between the Community Nursing Team and in my case St. Peter’s Hospice. At this point I also need to mention the McMillian Trust, who contacted us very early on. They were acting as an agent for the NHS and their job was to provide administrative support for us. What admin support you might ask? Well, such things as a blue-badge for your car. Being diagnosed with a terminal illness could entitle you to certain benefits – and they brilliantly took away all the form filling that both those things require.
We have been provided with 24hr contact numbers for both St. Peters’ and the Community Nursing Team, and that’s what we have accessed in our hour of need. I’m not a lover of change in these situations. Even though there must be 20-30 staff involved in my care from St. Peter’s they all have the same DNA. All of them approach with to care for me – ensuring my needs come first. Again, it’s the same with the District Nurses- they all focus on “my care” with nothing being to much trouble. It’s the District Nurses who are chasing GP’s, calling Pharmacies (that’s a challenge), or contacting St. Peter’s on my behalf. Nothing is to much trouble for any of them.
So, what’s our approach to the PC a process. Well, those who are involved in my care can only do their job properly if they are provided with all the current information regarding your condition. For this they are reliant on accurate current information – and that has to come from the patient. With little variety going into your body getting a handle on what’s coming out from where is important. Most of the questions asked of me are around the workings of my bladder, bowel or relate to sickness. This shouldn’t be a surprise as. I have stomach cancer. I struggled with severe constipation early on – many will understand how debilitating this can be – and can take weeks to get over. The resulting pain required me to use additional morphine (not good for constipation). Once again you quickly come to understand that getting best use of everyone involved in your palliative care is dependent on you listening to their recommendations and allow them to provide you the guidance required to ultimately make your day-to-day life considerable easier than it can become.
There have been some bad days. A bright Saturday morning interrupted by the realisation that my attempt to manage the walk from the bedroom to the bathroom was not such a good idea after all. I though I could make it, I did make it – but I wasn’t going to make it back. I was exhausted, but yes, managed to wipe my own backside. I returned to the bedroom via a loving wife and a wonderful neighbour. It was probably twenty minutes before I could speak. This is what cancer does. The excessive sickness started later. With St. Peters not having a bed available at that time their Care At Home Team were called in. That has been the “rock-bottom” point of my condition to date. Since that Saturday, with a change of medication and the daily visits from that team, that have taken over elements of my personal care, I have remained stable, and moved from the list requiring an immediate bed. At the same time I now rely on Jayne administering all my medication, as my ability to do it myself has been undermined by the fact “I cant remember what or what not I have taken”.
The Care At Home Team focus and tailor the care they provide to the care you need, and yes, that can change daily. They have been a great support to myself and the family. Always cheerful, always smiling and yes, where appropriate a sense of humour – something which is important to me.
We are now entering another phase of support, with the car now going to be provided via the NHS Fast Track Team, a team of staff from an Agency. St. Peters will partially withdrawal, but remain in contact if and when required. I’m always nervous when there is change. I have become use to te professionalism and expertise of the St. Peters staff. They have provided a service well above anyone would have reasonable expected, ensuring tat not only myself but the whole family have been engaged with during the time they have been looking after me.
My condition has been “stable” for the last three weeks. I have no desire to “rock the boat” by changing my routine and putting at risk what I currently have. I will continue to get the most out of every day, saving my energy for those closest to me.
12 thoughts on “My Pathway Journey – continued”
Thankyou for you articulate and honest blog.Many people are going through similar things,(My daughter has MND and told months not years life expectancy left).
It helps to know you’re not the only one facing the practical ,emotional and medical issues that you describe so well.I can only imagine how it feels to be the actual one facing it all.My thoughts are with you and your family.You are showing such fortitude.
Thankyou for sharing such a personal thing with us all.Your total honesty is helping others too.
Sending much love.
So sorry to hear this very sad news Andy, wishing we could help you in any small way possible. We have been friends for a very long time and feel very guilty that we have not kept in contact as much as we should have . Our thoughts are with you , sending all our love Vic and Janet xx❤️❤️
Thanks Jan – my love to you both. Xxxx
Andy, my heart and love is coming over the rooftops to you. Although your strength radiates outwards this must be such a challenging time for you all. Keeping all of you in my thoughts and prayers. Much love to you, your amazing Jayne and family. Mary xxxx
Dear Andy , I dont know where you find the strength to put into words what you are going through . I can tell from what you have written that you are in good hands , and you have Jayne by your side . God bless you my friend xx
Reading your story with such bravery and positivity. Thinking and praying for you and Jane and all your lovely family and dear friends. St Peter’s Hospice is a wonderful organisation which sees many patient with cancer and need PC and end of lift treatment. My Daughter Charlotte worked for the organisation for 11 years and my Mum was Nursed at Knowle when it was open in 2003. I know that they will give you the best care that they can and always make sure that your free from as much pain as possible. Xxx
A very sad read , but one I find myself mesmerised and glued to your every word . Beautifully wrote with such emotion. Really hope Andy your remaining time you have left with us is pain free and peaceful.. sending strength to all your family 💙
Andy, thinking and praying for you every day , wish I could write as you can / do .
Hi Andy I have just finished reading your blog , working for SPH is an emotional journey everyday, meet lots of lovely people, family’s but there are a few that touch your heart , enjoy every moment and cherish every memory x bless you fella
Andy, I am in awe how even in this most difficult and painful time for you and your family you continue to be an excellent wordsmith. The eloquent but brutally honest way you write about nearing the end of your journey is something I will always admire and remember. I was delighted how we re connected a few years ago, and how we were able to meet up again last year. Paul
Thanks for your continued positive comments and support. I can assure they are well received.