To mark World Cancer Day, we would like to share this blog post from Red Kites and Beaches written by WAY member Sue, which she has dedicated to the partners and families of people who have had, are living with, or who have died from cancer.
"I thought quite hard about whether to post today. I don’t want to detract from the great work and progress being made in cancer treatment. Ten-year survival rates today are double what they were 40 years ago, which is certainly something to celebrate.
But... there is something in the messaging about survival rates and cancers being preventable that can make those of us who have been widowed or bereaved to cancer feel like we should stay quiet on days like this, that our story might not be welcome. It’s understandable that people want to hear about the people who survived cancer, because those stories give us hope. Will you judge our partners, or us, if we talk about the ones that didn’t make it?
In that context, it didn’t feel comfortable to talk about Chris’s experience of cancer, you already know there is no happy ending and uplifting message of triumph! Instead, I wanted to write a bit about what it is like as the partner of a person with cancer. There are very few leaflets or support groups for us while our partner is ill. I am not a professional, and I can only speak from my experience but if someone were to ask me what it is like, or how to cope, here are a few thoughts.
It can be lonely
Once Chris had the diagnosis it felt like we were on a journey together but separately. When I talk about it I refer to “our” oncologist, I’ve caught myself saying “we” were moved to a palliative pathway. But all this was happening to him, not me!
We were lucky to have a lovely oncologist who talked us through everything together, but all the medical team’s focus was, rightly, on Chris. I found that this meant that nobody was checking on me and there was nobody for me to discuss my worries and fears with. This changed once he moved to the palliative pathway, the hospice service had a support group for carers, but I would argue that partners and families need support long before this.
You might be afraid that they will die, and you won’t feel like you can talk about it.
When Chris was first diagnosed, we didn't imagine anything other than a full recovery, and when I started our facebook page for updating friends and family I imagined it being a way of recording our triumph, something we would look back on when he was better. Then, as the results of the scans came in and the first couple of hospital admissions happened I started to imagine the worst. I had to face the fear of losing him, consider what my life “after” would be, and there was nobody that I could talk to about it. Nobody wants to hear those fears. In our brain’s amazing feat of cognitive dissonance, at the same time as we fear them dying, we try to pretend that none of this is happening! We hear words like incurable and palliative but still hope that something will turn up and we will get our miracle. Absolutely nobody seemed open to considering that he could die from this, it felt like I was the only one, and I felt disloyal for even thinking it, so how could I say it out loud?
Everyone seems to have an opinion, good news story or miracle cure
As soon as we started to share the news of his cancer we were met with good luck story after good luck story; the mate of a mate who was stage 4, had chemo or went vegan or whatever, and is now all clear. Cannabis oil. Ignore the doctors, they don’t know anything. From some of what we heard it seemed remarkable that anyone dies from cancer anymore - do they not know about the magical powers of spinach?! Other people would downplay our fears with statistics, ignoring anything we told them about our situation. He’s young, fit and healthy, he’s sure to be ok. We should think positive, they have all sorts of treatments. Someone even said to me that Bowel cancer was one of the good ones!
Our strategy for this was a one-strike-and-you’re-out avoidance policy!
It’s not your job to make friends and family feel better
Chris and I carefully drafted and edited the messages and updates that we put on social media - we wanted to maintain that positive outlook (especially as positivity seemed to cure so many of our friends of friends!), and we didn’t want to worry our friends and family. Even when we were told he was moving to palliative treatment we emphasised the positive things the oncologist said - he was the healthiest he had been for months and the doctors wanted to leave him alone for a bit (apart from the treatment for his kidneys that were failing). Everyone seemed to accept it. He was (whisper) terminal but (loudly) he was going to be fine!
Some of your friends won’t be able to cope, especially if the treatment isn’t going well. They might disappear for a while, or possibly for good. Don’t take it personally, they are also facing a loss, but it is not your job to hold them up. The other side of this coin is the unexpected people that step up. I have been humbled and overwhelmed by the love and support of friends who turned up and were there for me during Chris’s illness and are still with me now. These are the people who have held me up and I am forever grateful.
There is nothing you can do
I don’t think you can ever feel more helpless than when being told that the person you love has cancer. I’m not going to sugar coat this. You will feel helpless, because you are. It’s why I hate it being called a battle or a fight - there is nothing that you can do to change the outcome, you have to trust the doctors and hope you will be one of the lucky ones.
For a control freak like me, the life of uncertainty that cancer creates is a huge challenge. Every time you go to the clinic with them it’s like going to get results for an exam you didn’t revise for in a subject you were never taught. Until the oncologist speaks, you have no idea what’s next. Plans were made and cancelled because he was too ill to go. Medical options were presented and then just as suddenly withdrawn. We even turned up for a pre-op assessment appointment, and left instead with the news that he was inoperable and incurable.
This has changed me. I have learned (the hard way) to look for what I can control in a situation and let everything else run its course.
Make some time just for you
Loving someone with cancer is physically and emotionally exhausting and so it is really important to look after yourself. Keeping that connection with your interests and the things that make you “you” are also really important in holding on to your identity. Chris used to read the Bowel Cancer Man blog, and I read a post by his wife, who said that Reiki helped her. I was a sceptic, but I gave it a try and found it really helped me to ground myself and overcome the anxiety that was threatening to cripple me. Time with my friends was also important, going out and having a few drinks and talking about anything other than cancer recharged my batteries and made me stronger for Chris.
It’s not all doom and gloom - have fun when you can
One of the worst days during the treatment phase was when we had to go to Guys Hospital to see the consultant. It was an awful appointment in many ways, and was the first time that we realised what we were really up against. As we left the hospital, we walked past the Shard. Chris had never been to the top, and so I suggested that we did it then. He really loved it and our main memory of the day was of the trip “up the Shard” and not the information we had just been given.
We also had an amazing trip to Penzance after he had recovered from radiotherapy, and I am glad that I booked tickets to see Rufus Wainwright at the Anvil on our wedding anniversary and his birthday, 22 days before he died.
Now, those and other good days and memories are little diamonds sparkling in an otherwise really dark period.
Be practical, and get your paperwork in order early
On a purely practical note, even if you are sure that you are going to get through this, as so many people do now, make sure that your wills, as well as pension and life insurance wishes are up to date and signed, as early as possible. Signing a will is not a symbol of weakness or defeat. But it is much harder to do when shit just got real. So do it while it still feels abstract, it will be far less painful.
There are many more things I thought of, but I think these are the things I wish I had known at the beginning. So often it helps to know that you are not the only one having these thoughts and feelings, and I only really found that support and feeling of being seen when I found the widowed support community. I hope that in time we will see better support for the families and loved ones of people with cancer.
Meanwhile, on this World Cancer day, don’t just light a candle; please reach out to anyone you know who is coping with cancer and its wider effects or has been bereaved by cancer, and let them know you care; or if you can, support the organisations that are looking for better detection and treatments."
Read more from Sue at her blog Red Kites and Beaches here...