This is my monthly blog where I talk with someone who has gone through a bad time, a significant change or difficult decision. I wanted a space so that people can share their experience and hopefully pass on some of the learning from this, in order to help others. What I know from the work I do with people is that finding meaning from the chaos and feeling like what you do matters or makes a difference can alter what initially feels like total devastation into something transformational.
This month I’m sharing the experiences of someone living with cancer. Their hope for talking with me was not to generate pity, as they are fiercely independent, but to offer insights and deeper awareness of the stages of emotional acceptance that develop alongside the journey of cancer.
What Life event or situation have you faced?
I am Living with cancer and now have faced that this is a terminal diagnosis where the treatment is to maintain a quality of life not a cure. Acceptance has evolved over time. I hope I have a fair bit of time left but this is dependent on the growth of the cancer and treatment available. There have been a number of changes in treatment and I am refaced with dealing with how long I have left. Every time there is a reassessment of the cancer it’s like a wakeup call and a period of adjustment. I‘ve had this now 5 or 6 times.
Each time there is the initial shock. The shock of how serious and nearer the end is. Every time there are options things they can do, but as the time goes on options are used up and disappear and it gets very scary again. Going back to the shock of this after periods of being well then facing the difficult outcomes from limited choices now is the hard part. However – the discussions with my consultant help me to consider how to gain a quality of life in this phase and I get on with it.
The end point is faster approaching, and this is a different thing to deal with than when first diagnosed, as I have the knowledge of how to find adjustments.
What was the impact on your life as you have lived it?
With hindsight – the quality of my life now from the first 2 years with living with cancer is better now. I have had to change my life to accommodate the disease. I am very luck to have the financial security to enable me to do this. I took medical retirement that provided me with financial security. Without this I would have been too tired to keep going and wouldn’t be able to do any lovely stuff I do now. I have stepped back from work and manage the energy and time to do what I want. The last year and half has been amazing. I have to look at the diagnosis to make positive decisions embrace the changes. I can see that the illness has made me prioritise and accept that this is what I have in my life and I can make the best of it. There is a contentment rather than frustration with this approach. Because it is a gradual and incremental decline of physical health and stamina, I have been able to adjust as I go along rather than adjustment to a sudden accident where physically things could have changed overnight. The slow change is easier to adjust to. I know I am not the woman I was 5 years ago but I am accommodating this along the way and feel I am managing this response and I have control how I physically feel.
What was the impact on your identity?
It is important to be seen both for myself and those around me as healthy on a daily basis – I want to stay well as long as possible. I don’t want people to assess me as ‘unwell’ I like to be perceived as the same fundamentally as it is important to me not be defined by the disease. Losing my hair again is difficult as it is something others can see and I can see in the mirror that says ‘I am ill’. I tend not to look therefore in the mirror. The hair will not go back unless I stop the treatment and stopping the treatment now means it is near the end. I don’t want to die bald, but I would rather take the option of living with baldness than not. But I don’t like it as it defines me as being a different person to who I was before I got my diagnosis.
Are there any lessons to be learned from this?
I have learnt that I can do something about the diagnosis, there are a lot of things done to me and for me. What is in my control is looking after my health and make changes accordingly. By managing the energy I get to do the things I want to do.
Acceptance that I can’t do everything or as much as I once could do, and I can live with this. I have made decisions that dedicate who and where I spend my time. This wasn’t as hard as I thought. It has allowed me to take control – not feel obliged or ought to do – but instead what I want to do (outside of family commitments).
I can look after myself and not worry so much about how other people might see it differently. It is important that those people around me and my family can see that I am enjoying my life but doing as much as I can to make my time last as long as possible. I want my family to see that I am fighting to be with them and in their lives as long as possible. This takes the pressure off my family they don’t have to worry about me not coping or feeling sad. This is my contribution to take the worry away for as long as possible – I want to be affecting change and making a contribution in life that makes a difference.
What support did you have?
Firstly the support of family and friends. This was something I never doubted or underestimated the value of this. Phone calls and messages every day when needed. The level of love every day is not taken for granted.
On a different level was my rescue dog Holly. She got me up and out on my hardest days. I never felt lonely. She was stoic and brave and courageous and got me through some of my worst days. We had such a strong bond – the love and support of her was incredible. When she died so suddenly last year, I didn’t realize how bad I would feel. She had been the comfort and escape from it all. The things she had been through – I admired her spirit and we did so much. Part of my fight was that I didn’t want Holly to be on her own. I was so worried about what she would be without me it kept me going. I needed to keep going. I lost routine and the drive to go out without a dog. When my dog died I really noticed the difference. There was a huge well of grief.
I have taken on a new dog Sophie after Holly died last year. It was a pragmatic decision to get a new dog for me. I am pleased I am able to give her a life that Holly had – and for me – It gets me engaging with others getting out each day and doing normal routines outside of the house. It’s just as valuable for my health but different in regards to the level of bond, but that is ok as the bond is growing.
What did you need that you didn’t have at the time?
I should have been more accepting of how the disease could have impacted on me with regard work. I didn’t engage with HR and Occ health for a while. I hid the impact of the treatment was having on me, as I equated opening up about this as giving in to it.
In hindsight, I needed to understand and listen to the advice from Drs and Macmillan nurses on how the treatment would affect my brain capacity. Instead, for a long time when at work I pushed myself too hard to keep up. Things took longer and I was tired – I didn’t want to accept at first that chemo affected my brain. I should have engaged with work earlier to get more support to change my role and what I could do – when I did I got lots of support.
What advice would you think helpful to pass on?
Be aware of how the treatment might affect you – it might be hard to grasp this if you are fearful of being seen as different. I wasn’t ready to be put on a back burner, so I delayed discussion. I made assumptions about what I would be given at work and that I wouldn’t be of interest or merit in the future, and this wasn’t true. Instead of assuming the worst – from my experience, your workplace can be very supportive. They enabled me to cherry-pick aspects of my work, and I was still making a difference.
Listen to advice. There will be an impact of the illness or treatment, but people want to help – don’t be afraid of those conversations as you might be assuming things that are not true. You can gain so much by talking things through and making joint decisions about how to manage this work-life balance.
When making comparisons from past self and future potential self, it can lead to frustration. Instead, try letting go of frustration by being accepting. Try to turn every moment into a choice of ‘what can I do?’ rather than focusing on the things you can no longer do.
The benchmark of capacity is lowering over time and I am aware of this and accepting that this is happening – try and be kind about this. See how much you have achieved in the past year and what you are pleased about. Be aware of the phrase ‘I’m not the person I used to be’ which can stop people in their tracks. Be proud of what you can still do with the challenges you face today. Inside me, I am more like my grandmother who would be pleased with what she could do at 90 with pride.
How do you see yourself now and in the future?
I am aiming for a charity MacMillan walk in July, a marathon – this is something to be proud of. I am allowing that if the achievement is less than I would have set for myself 5 years ago – it’s not bad for a 57-year-old with cancer. In my shoes, I am proud. I allow that my body might be tired but look how much I have done today – don’t beat yourself up.
