A big thank you to Ali Cowls for sharing her Carer Story. Ali tells the highs and lows of caring for her husband Simon during his treatment for bowel cancer.
When I was growing up I always wondered why people would say they knew exactly where they were when they heard of certain events, JFK being assassinated, the end of the Second World War from my parents and grandparents. I didn’t think this was possible to know exactly when you heard something, and then I experienced it...........
February 2016, Endoscopy Suite at Derriford Hospital Plymouth 16:45. Boom! Our life changed.
Christmas 2015, Simon kept saying he felt something was wrong, he couldn’t quite put his hand on what but felt “something was there” in his abdomen. We were very fortunate to have a great GP who acted when Simon went to see him, along with these symptoms in July 2012 Simon sister Sarah had lost her battle cancer at the age of 46, there was family history his GP listened and acted. (I need to add here that there is no genetic link to either of their bowel cancers. Just bad luck we were told). So as an urgent referral Simon was seen in a couple of weeks and from that we were referred for a colonoscopy.
I worked in the hospital and so when, on the February afternoon, Simon phoned me to say could I go up to the endoscopy suite following the colonoscopy as the Consultant wanted to chat with him. I sat waiting for them to show Simon and I to the consulting room, I caught sight of the navy blue spotted uniform of the cancer nurse specialist and my heart sank. The windowless room where we were shown to and told the devastating news will stay with me, Consultant and nursing staff were caring, empathetic and informative. They had found a tumour that was almost totally obstructing his bowel, whilst the biopsy would confirm bowel cancer the information, they had was enough. This conversation will remain with me forever, it’s a point in time when our life changed, our future changed, and my life changed where 'carer' was added to my role as a wife.
Following the initial surgery Simon was diagnosed as having stage 3 Bowel cancer. Surgery and chemo followed. We had 12 months of being cancer free and then it returned. He is now stage 4 on palliative chemo, to get to this point he has had numerous surgeries, including cytoreduction and HIPEC surgery in Basingstoke and we are now on cycle 76 of chemotherapy, we are on the last line of chemo knowing that when this stops working we have nowhere else to go.
In this time there has been highs and lows, from thinking he could be cured, to knowing he can’t be. There are so many elements to this, it’s hard to know where to start. Lot of this comes naturally to anyone and my heart goes to anyone who has had this happen to them.
So let's get practical - how we manage life with cancer
You have to manage your life, you will have to try to organise a life that is dictated to through hospital appointments and treatment cycles and so being practical with those things is important, however, you need to do other things as well and make time for things that bring you happiness. We have been very fortunate that we have had time to make memories, things that we can both look back on and memories that I will take forward with me through my life.
1. Planning your time
We are by nature quite an organised pair, both of us had managerial posts and so we usually know what we are doing and where we are going. So, our life now has to be organised, so we have a clip board, on this clipboard we have a print out of a calendar of the current month, we have had this for over two years and it works for several reasons. It organises us, so we know what we have in way of appointments and we put on everything we do, from having a coffee somewhere to going away in our van, appointments etc. This works in two ways, looking forward we know where we are, looking backwards we know what we have achieve and done. You have to be disciplined to put everything down, however big or small.
It is amazing how much we do, obviously COVID did hamper this somewhat, but we kept it going and we find this a great testament to what we have achieved. Simon was so scared that his life was going to be ruled by lockdowns and isolation as a clinically vulnerable person, but we managed walks, days out etc, we live in Devon and so are fortunate to have moors and sea around us and in easy access.
Our working life was always planned, holidays planned months ahead, social life in full swing. Your planning window will be a lot shorter, in terms of fitting around treatment, appointments etc, but please plan things. We are so fortunate to have a motorhome, we do not plan extended trips but are able to get away for a few days here and there. A year ago, we drove to Scotland and travelled around. In fact, we even had a consultant video appointment in the van.
Just because you don’t plan a long way ahead, please don’t stop planning, it’s just a bit different, coffee or lunch out, trips to local places. We have joined the National trust and the RHS, we don’t stay all day at places, we go with how Simon is feeling. Be flexible, and plans can change daily, and not always for negative reasons, we have had on days nothing planned and have had the best of days.
2. Getting things done despite cancer
Chore lists and notes, up until 18 months ago I was working every day, Simon found it very hard being at home alone and keeping him motivated at this time was hard, so notes and chore lists were started. I bought a notebook and every day I wrote him a note and gave him a list of things that needed to be done. Now these ranged from empty the dishwasher, to cut the grass, research something on the internet, walk to the local shop for bread or milk. I would police this and anything not done would be put on the following day. It’s about being inventive and knowing the person you are doing this for. It gave Simon a focus in the day and to be fair we still use chore lists now. I have kept all the notebooks from this time and will occasionally look over them to see what was written and know far we have come.
Lists are a part of our daily routine, it can focus the mind and on days when you both feel the everything is getting on top of you knowing that simple tasks have to be completed can reset your day and you have the added benefit of achieving something.
3. Having hobbies and time to yourself
It sounds a bit cliched to say have a hobby, maybe just do something you love. We are fortunate to have a garden. And I have to say if lockdown did something for us it was making us into avid gardeners, we both have areas that the other doesn’t touch, mine are all the plants, pots and greenhouse and Simons is the grass (I will help with the grass if his energy levels are against him but mostly this is his responsibility), it makes us get outside, and also, it gives us both breathing space. On days when the weather is against us Simon makes models, he has a shed at the bottom of the garden and this is his space, I know if he goes there, he is not only doing something but he needs some headspace, it’s a great way of clearing his head.
I read, do jigsaw puzzles, and have started a project of typing Simon's Great, Great Grandfather's diaries, Simon is also making scrapbooks of his working life and photographs, he wants these for his children. So on rainy days we still ensure we have something, sometimes though, we just watch old films, we never class any day as wasted.
4. Getting those affairs in order - end of life conversations
I make no apologies for this one but it has to be done. We ensured that wills were updated and current. We then had to talk about funerals, a horrible subject that no one wants to discuss, but what we did was discuss both of our wishes, it didn’t seem so focussed on Simon and we both know what the other one wants. This accounts for not only after someone’s death but where they make that transition, it was important for both of us to know where Simon wants to die. Simon does not want this to happen in a hospital or hospice, he wants to be at home and to be honest this is where I want him to be too. This means he has the reassurance that those conversations have been had and we do not need to go over them again.
Once it’s done, put it away and don’t make this a major focus.
5. Talk about how you are feeling during your loved ones cancer treatment?
Like most carers I fell into the trap that we do and did everything but talk about me, we invariably find it hard to do, just like looking after ourselves. Someone asks how I am and I will say “we are ok thanks” then go into a conversation about how Simon is. On my part I always feel guilty if someone asks about me, it's Simon that is the ill one not me, it also deflects from me having to start to talk about how I really am. I wouldn’t know where to start and I wouldn’t know where it would stop. What you find, as someone that looks after a person with cancer and going through treatment, is that you have to be the person with that butterfly net and the person that is the driving force, this can be exhausting and at times both physically and mentally. Be kind to yourself. We talk a lot, but sometimes we do tend to “dance round the edges”. Don’t ever push the hard conversations with each other, they will come, but also remember the good times, laugh at the happy, ridiculous moments.
Only you will know how you are doing, I am not afraid to live on my own, I know I will manage, I am afraid to live without Simon, the driving force in our life, my better half, soul mate and protector. When the panic sets in I remind myself, being without him is not today, this week or this month, however you park this one it is a shadow that follows me daily.
Caring for someone that is terminally ill is hard, rewarding, sad at times, but mostly it is a privilege. I would never let anyone else take over from me, I am fiercely protective of Simon, and want our time together to go on for as long as we can.
To hear more from Ali, she blogs regularly at www.shortsharpscratch.com/
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