Palliative care at home
My wife’s name was Beata. She was just 37 years old when she was diagnosed with ovarian cancer, shattering our happiness in a heartbeat. Sadly, as is usually the case with ovarian cancer, it had already spread when it was detected, so Beata’s prognosis was poor from the outset. Despite this, she did everything she could to try to fight her illness, showing the most amazing strength and determination during her three year battle, but in the end she eventually ran out of options and was referred for palliative care.
This was a pivotal moment. After three years of trying to stay positive and never giving up hope, we were finally forced to admit that all hope was gone. It was so desperately hard to accept and the feelings of disbelief and denial lingered for some time. We couldn't believe that there really was nothing that could be done to help her and that such a beautiful, young life like this had to be wasted. She still looked so young and healthy on the outside.
We had a hospital bed installed at home, as I wanted to care for her myself for as long as possible and to try to keep fighting the cancer while Beata still had the strength. I looked after her as best as I could with the help of her mum and her sister. It was very distressing watching her deteriorate and there was a point when I felt that her spirit had already died – she was no longer herself, she no longer warmed people’s hearts with her beautiful smile and excitement about the wonders of life and she no longer showed the love and affection that I had appreciated so much.
The district nurses had fitted her with a syringe driver to drip feed medication but progressively her symptoms got worse and became too difficult to control at home. We reluctantly agreed that it would be best if Beata was admitted to a hospice.
Moving to a hospice
Princess Alice Hospice within a couple of days and an ambulance was called to take us there. Rather insensitively the ambulance driver asked “Is this for respite or no return?”!
Beata was noticeably anxious about leaving the house for the last time - she was hesitating and nervously collecting together things that she thought she might need - but she was extremely brave about it. I felt very emotional when we arrived at the hospice. I remember one of the hospice nurses giving me an understanding look and touching my arm sympathetically as I walked into the building.
Once settled into the room we immediately felt safe. Doctors and nurses busied around us and everything was being done to make Beata as comfortable as possible. It was a huge relief to be there and even Beata said “We were so lucky to get this”. Initially I stayed with her during the day and went home at night to be with my kids, but very soon I moved into the hospice, sleeping on a put-up bed in Beata’s room. I didn't want to miss a moment with her and wanted to fulfil the promise that I’d made to her when she was first diagnosed with cancer – that I would be there with her every step of the way. I was even scared to pop out of the room to get a cup of tea in case anything happened.
The next two and a half weeks were like a roller-coaster ride. There were days at a time when she was barely awake or able to communicate and then suddenly she would find new strength and be sitting up chatting. I remember just a few days before she passed away she was eating chocolate ice cream, drinking coffee and brushing her teeth, but for two days before that she had been barely conscious. Every time her medication was increased it seemed to knock her out for a while but then she would regain control until her medication was increased again and then the cycle would repeat itself.
Waiting to die
The care we received at the hospice was incredible. The nurses showed the most amazing sensitivity and compassion and were truly angels among all the sadness and despair. But it was so agonising seeing Beata in so much pain and discomfort and although we had access to some of the best palliative care in the world, nothing could take away all the pain. The hospice nurses said that young people often suffer from “total pain” – physical, mental, spiritual and emotional - and that death can be more drawn out as the body and mind aren't ready for it.
Watching the person I love die slowly in front me of me was excruciating. The whole scenario of coming into a place where you just had to lie there and wait to die was hideous and the enormity of the situation impossible to comprehend. It was like someone saying to me “I'm going to kill your wife; I'm going to do it slowly so that she suffers as much as possible and I'm going to make you watch”.
Beata’s last words to me were “I love you too”. Two days later I was holding her hand and talking to her as she drew her last breath. I thought I would be strong and in control when this moment came, as we all knew it was going to happen and had been preparing for it for weeks, but when it actually happened it was like a tsunami. People were asking me questions but I couldn't speak. My first feeling was immediate panic as the reality of the situation hit me - that I could never talk to her or hold her again; that she just didn't exist any more. Then I felt a massive surge of anger at how undeserved it was. She had tried so desperately hard over the last three years to fight her illness and had so many unfulfilled hopes and dreams for the future – she deserved so much more.
I went home alone that evening, back to an empty house where the hospital bed still stood and medical paraphernalia still lay about the place. I felt so incredibly empty and alone.
Coming to terms with my loss
Over the next few weeks I was overwhelmed with emotion. I felt numb, slow to process things and unable to make the simplest of decisions. Even choosing what clothes to wear was difficult and other ordinarily simple tasks felt daunting. The sadness and emptiness burrowed deep inside me and life felt like it had lost all purpose. But strongest of all the emotions was the sense of pity that I felt for Beata. A bereavement support lady at the hospice said that I was grieving for Beata’s loss as well as my own.
It’s a few months on now and while I've got a long way to go in the grieving process yet, I've reached the point where I feel in control of my emotions rather than my emotions controlling me. I've talked a lot about my feelings and experience, felt the pain of my loss, and accepted the sad truth that Beata can no longer be here to share my life with. A number of things have helped me to deal with my grief up to this point - I’d like to share some of those with you in the hope that you might find them helpful too.
1. Talking Really Helps
Some friends and family called and some visited, but others kept their distance for a while, not knowing if it would better to give me space to sort out my emotions. But I desperately wanted people to talk to – I felt so alone - so I appreciated every visitor and caller I had.
2. Friends and Family: Don’t Try to Make Things Better, Just Be There
Various people sent messages of sympathy and some tried to console me, but often these were just platitudes – words said with the best of intentions to try to alleviate my suffering, but actually sometimes making things worse. When people said to me “at least you had lots of happy times” it just reminded me of how much I’d lost. When people said “it’s early days yet”, it just emphasised what a long road of recovery I had ahead of me. I didn't want people to try to make things better - that wasn't possible - I just wanted them to be with me, to share my grief.
3. Keep Moving
Apparently Einstein once said “Life is like riding a bicycle; to maintain your balance you need to keep moving”. That really resonated with me – I didn't want to slow down, wobble and fall over, I wanted to keep moving and stay in control of my life, so that’s what I tried to do.
4. Get Out the House
Following advice from the hospice I set myself a target to get out more – to be around other people, even if it was just wandering around the shops. That helped.
5. Don’t Slip Into Bad Habits
I‘d been through a big loss before and knew that there was a thin line between sadness and depression. It would have been so easy just to stay in bed in the morning, to let the house get untidy or to spend hours watching TV, but I was determined not to sink in my grief and self-pity. So, I made a promise to myself to stick to my normal schedule and routines as much as possible, even though I really had to push myself to do this.
6. Set New Goals
I stepped back and took a hard look at my life – I thought about what made me happy and what I would change if I had the opportunity. Then I decided – I need to make it happen - and I came up with a list of 14 goals. It felt at times as though my head had a different agenda to my heart, but I knew that one of my biggest challenges was going to be finding new purpose in life, so making this list felt like a step in the right direction.
7. Use Your Experience to Help Others
I wanted to do something with all the experience that I’d gained during our cancer journey together, so I contacted a number of cancer charities to see how I could get involved. I'm now working as a volunteer with Yes To Life and participating in support groups with Topic of Cancer.
8. Find Positive Ways to Channel Your Anger
I started to write articles campaigning about issues that I felt passionate about, in particular how commercial conflicts of interests are slowing down the search for cancer cures, which helped to channel the anger at my loss in a positive way.
9. Plan Something You Haven’t Done Before
I booked myself onto a weekend meditation retreat (well out of my comfort zone!). The inspiration for this came from one of the nurses at the hospice and I felt it would be good to invest a little bit in my spiritual well-being after the trauma of the last few years.
10. Set Yourself a Challenge
Perhaps one of the biggest decisions I made though was to plan a big fundraising challenge in Beata’s memory - to give something back to the charities that helped her. I wanted to choose something that reflected the scale of the challenge Beata faced and the courage and determination she showed during her fight, so I've decided to try to climb Mount Kilimanjaro, the highest free-standing mountain in the world! That’s really given me something to focus on!
I hope that reading about my experience has been of some help to you. If you are able to make a small donation to help me raise money for the Princess Alice Hospice and the cancer charity Yes To Life, I’d be very grateful. Please visit my Kilimanjaro for Cancer fundraising page. Thank you.