My name is Jo and I am 46. I have incurable cancer which started in my uterus and had already spread when it was discovered. I have 2 teenage children and I was widowed just less than 3 years ago. My husband died of bowel cancer, when it was discovered it was incurable as it had already spread. I think it’s fair to say the last few years of my life have been tough!
When we were told about my husbands prognosis we felt devastated and shocked. He was a fit healthy man with no symptoms other than excessive tiredness and dramatic weight loss. No similar situation had ever happened to anyone in either of our families before and none of us knew how we were supposed to think or react or cope because we had no previous experience of death of a relatively young family member. Brian chose to fight his cancer with every type of treatment offered including one which had to come out of a special regional funding pot and a clinical trial. He refused to talk to anyone including me about how he felt emotionally or physically and held fast to the belief he would be cured. He was brave and strong and positive and cheerful throughout 99% of his illness, he pretty much ignored it whenever possible and continued in his job, which he absolutely loved, up until about three weeks before his death, through sheer determination. He was an extremely kind and proud man and was highly respected by those who knew him.
Whether the way he chose to deal with his cancer helped him and made things tolerable I don’t know because he never discussed that either, I sincerely hope it did, he certainly seemed at peace as I held his hand and he slipped away, but for me as his closest companion and carer the fact we couldn’t talk about it became intolerable at times. I’m not cross with him for the way he coped, everyone is different and deals with things differently, but it did help me to decide it wasn’t the way I would choose to cope. It also very much limited my choices, and my ability to plan for the future. I wasn’t even sure if he had sufficient pension provision to see me and the children ok and worrying about money became another burden for me to deal with pretty much on my own. Thankfully I plucked up the courage to admit my dilemma to one of his closest friends and work colleagues who was able to reassure me that things would be OK. It was a huge relief to know I would be able to manage but I also felt in someway I had betrayed Brian, he would never have discussed anything so vulgar as money with his friends.
Another dilemma was where he would die. We never discussed it , so when the time came I chose to transfer him to St.Gemma’s hospice because despite the lovely district nurses and my best friend I was pretty much on my own at that point as Brian was such a private person and felt very uncomfortable with people seeing him incapacitated in anyway. ( My parents had the children at their house to try to minimise their distress and to try to protect them a little bit and also so I could focus solely on Brian). When the ambulance came to take him to St. Gemma’s it became clear that wasn’t what he wanted and he wanted to stay at home but I hadn’t made sufficient provision for this to be possible and there just wasn’t time to sort it out. At this point I hadn’t slept for over 48 hours and he died less than 24 hours after he was admitted to St. Gemma’s. I will always feel I failed him at the end because he hadn’t told me his wishes I hadn’t been able to plan and so he died somewhere he didn’t want to be. It still upsets me to think of it now but I couldn’t have coped alone and he was given the most amazingly loving care during his last hours. I sincerely hope that at the end he was only aware of the love and care bestowed on him not the location. Having experienced how amazing St Gemma’s is, I would definitely choose to die there if possible.
Throughout Brian’s illness I was lucky enough to find a multitude of lovely people who were prepared to talk to me about the situation, people I knew before and became closer to and people I met along the way. These people kept me going before and after and I certainly would have found things so much tougher without them. I count myself fortunate to have had such people in my life that can make a positive difference to every day. Brian surrounded himself with friends and work colleagues who had no idea just how ill he was and were happy not to ask. He certainly lived his final 18 months to the full with work, social events, holidays and new life experiences. I think he almost looked forward to chemo days with a kind of” bring it on” attitude. He absolutely packed his life full despite not talking about his illness or the future. I think he probably knew that his pension would see me and the children okay but it would have been so helpful if he’d just been able to share that with me when I asked. I suppose he also thought that he didn’t need to plan much as he knew as his wife everything would pass straight to me and that I had a job to go back to and I would be able to provide for the children’s futures. I guess he didn’t need to really worry because he knew me and the kids had a home and an income and so in one sense mine and the children’s lives would carry on the same. In some ways that was true. We were able to stay in our own home with sufficient income and so with the support of our friends we got by, however there was a huge gap in our lives to adjust to.
Unbelievably less than 2 years after Brian died I was faced with the chance to try out my way of coping with the prospect of death first hand too…… But this time I was also faced with practical planning for the children’s futures such as who they would live with and how money would be placed in trust for them.
After a number of years of painful heavy periods I finally felt a hysterectomy was my only option as the impact on my everyday life had gradually become so unacceptable I was willing to attempt to overcome my fear of hospitals. It goes without saying I wish I had done it sooner, but I had no idea that my life was in danger. I had a number of tests prior to surgery all of which seemed to suggest common benign fibroids. I recovered quickly from my operation believing this to be the start of my new improved life and looked forward to being signed off from the hospital at my six week check. The results came back as a huge shock, one that I hadn’t seriously anticipated as an outcome and then the full story of just how serious things were came back after an MRI and a CT scan.
My cancer is classed as aggressive with limited helpful treatments available especially as it has already spread. Making treatment choices under immense pressure without any prior medical knowledge or experience felt really hard. People were asking me to make quick decisions with very little information at a time I had just been told I was going to die, it was completely overwhelming. In the end the decisions for me were fairly straightforward. I researched the facts and discovered that chemo only had a one in ten chance of prolonging my life so I decided not to have it. I get very distressed when faced with needles, scans and hospitals and felt clear I didn’t want my last few months to be about those things. If the odds of them being helpful had been much better then I would probably have taken some very deep breaths and gone ahead with the chemo but given all the facts for me personally it didn’t feel worth it or an acceptable use of my now very precious time. Everyone is different and everyone chooses differently depending on their own feelings and priorities. There’s really no right and wrong but for me this felt the appropriate choice. I haven’t regretted the decision I made. I’ve been relatively well for many months and managed to do some lovely memorable things with my friends and family. Chemo side effects may have really spoilt those opportunities. As I become more ill those memories and photos and things I bought as mementos will remain and be there to talk about.
In December last year ( 5 months after being diagnosed ) I was told I probably had about 3 months to live, based on how I felt and the symptoms I was experiencing. Obviously this came with a great big package of emotions for me and those around me. I decided at that point I needed to plan, talk and then live my life to the absolute limit for as long as I possibly could. I talked to a financial advisor and a solicitor, I changed my will, I looked into and chose the best ways to apportion my monetary assets. I thought long and hard about who would take my children and discussed it with them and their potential carers. It was very tough making those decisions. The children do not get on at all and so splitting them into two households felt the right decision. My son now lives with my parents and my daughter lives with my best friends and their family. I will be forever grateful to all of them for agreeing to take on my children. My female best friend has also become my main carer too despite working full time and now having three children to care for.
It was so hard to get my head round all this at first. Because Brian had died there was no parent figure or carer figure already in place so these things really did need to be discussed and decided upon. I’ve also been fortunate enough to be able to afford to have a carer come to me 3 mornings a week to help me shower and dress and do some cleaning jobs. My mum also helps out with my care one morning a week . Once all those things were sorted out I’ve tried very hard to not think too hard about them and concentrate on doing nice things and seeing those people who are still able to enrich my life. This may sound very harsh that I’m not willing to see absolutely everyone who wishes to see me but with increasingly limited emotional and physical strength I really have had to make some difficult decisions in order to safeguard myself from becoming overwhelmed and overburdened by those around me who although they mean well actually add to my stress and sadness.
Despite my sad circumstances I can honestly say I have had some truly amazing and wonderful times with friends and family and also taken up new hobbies such as painting and crafting which I had no idea I was capable of!! These have led to me being able to make some rather nice ( though I say it myself) gifts for family and friends as well as giving me some relaxing, rewarding and enjoyable new hobbies.
Christmas was very hard as I felt really unwell (despite being at Center Parcs with all my close family and friends) Both before and after ( including my birthday) I spent in St. Gemma’s to get my symptoms under control, which they did. I really believed I just had a couple of weeks left to live but the medical staff didn’t think I presented like I was about to die. I therefore agreed to have a CT scan which amazingly told a different story. Although things had progressed significantly they weren’t anywhere near as bad as suspected and I was told I had another few months at least!!! This came as a real shock. I had made my peace with God, written my letters, bought or made people presents,apportioned my possessions and assets, planned my funeral and wake and even said my good byes to most of my work colleagues and some of my friends and family. Adjusting to more time was so strange. I felt quite scared at first. How would I cope with having extra time when I felt really ill and what would I do with the time now I had limited mobility and stamina. I found myself asking what was the purpose of the extra time.
Eventually I reluctantly and hesitantly came home. With a plethora of hospital equipment and the support of my best friend and her family and a number of counsellors, church leaders and health professionals I finally felt that there was sufficient support around me to give independent living another go. I can honestly say that overall it’s been a positive bonus to have the extra time. There have been many lows but the highs have definitely outweighed them and I feel so lucky to still be here and relatively well.
An oncologist once said to me ” go and do everything you can and want to do. If you still have time left then do it all again”. It’s been a great mantra to live by. I have just booked to go back to Jersey for a few days in three weeks time. I never thought I would be well enough to do that again but thanks to excellent medication and a little bit of luck I am.
I think it’s really important to always have the next thing to look forward to. A shopping trip, coffee with an old work friend, a pottery painting session, a hair cut. St Gemma’s offer a great selection of nice things too. Art therapy, an aromatherapy massage, a chat with a counsellor, doctor or nurse and also some really practical stuff; a session with a social worker to talk to about benefits or an end of life wishes document or an occupational therapist to sort out equipment for the home. All these are completely free of charge so well worth asking about.
I don’t know how long I have left. I know things are progressing and I am more tired and less able than I was before. But I plan to keep to the plan. Live everyday to the full. Keep talking to those around you that are important to you and let them know how you feel, especially if you change your mind about anything. You only die once so it’s important to do it your way.
I don’t mean to sound as if I am trivialising dying. I really don’t want to be ill and die and leave my family and friends whom I love so dearly but this is not a choice I have. I am therefore choosing to make choices about the things that are still within my control and that feels both empowering and uplifting within a difficult and sad situation. Yes there are times when I feel so sad and fed up I’m not sure I want to go on but by aiming to follow the plan I have explained above then some of the time feels positive and useful and hopefully comforting to those who look back on it.
1. Take your time to decide anything.
It’s your life and your death. Learn to say no. Don’t be pushed into things you don’t want to spend time doing because you feel obliged to or guilty. Equally if you decide to do something believe in yourself and do it wholeheartedly. Don’t let what others say put you off.
2. Find out the facts.
Asking questions means you can start to understand the positive and negative effects of decisions you make and hopefully make those that are right for you.
3. Tell those who need to know
If you make a decision about something that will be important to others because it affects you or them make sure you tell the people who need to know so there are no nasty surprises for anyone.
4. Plan, prioritise and apportion your time.
Do the most important stuff first. This is probably the practical things such as wills etc. closely followed by making sure you tell those you love how much they mean to you and plan to spend time with them. Do things that are fun and enjoyable and don’t do the things that make you sad or upset unless you believe the benefits are worth it.
5. Focus on the positives.
Despite the obvious negatives, there are generally some positives if you look hard. If there don’t appear to be any then create some new ones by meeting new people or taking up a new interest.
Jo Stone, May 2015