After living fifteen years with my own cancer, including working twelve with everyone else’s too, I thought I might be unshockable. However the last few weeks have left me shaken emotionally. Firstly, one of our long-term friends was diagnosed with ovarian cancer. This led to her having a lot of intensive treatment and surgery. Now she has been told there is little time left. She has a husband that is also unwell and now facing the rest of his life alone. They have no children. But the worst thing for me is that they have chosen to no longer speak on the phone. They won’t see visitors either. We keep in touch by email but they are very insistent that is all. Finally there will be no funeral. This is the first time I have ever encountered this reaction.
Secondly, one of my incredibly supportive friends was diagnosed with breast cancer. A total shock to us both! But she had been seeing her medical team for some time, with various symptoms. However a suspicion of cancer was never mentioned at any stage over the years. Which caused me to think yet again, how individual, cancer can be. When close friends are diagnosed it is always upsetting. But I couldn’t help but wonder about the lack of discussion. Of course I couldn’t cure their cancer but personally I have always found it helpful to talk about things. Yet again we can see how we are all impacted differently.
I feel totally helpless in both cases. Probably how Mrs L felt when watching me go through my own experiences? Not about me this time though is it? I remember writing a piece in my early years about having to be selfish once cancer enters your life. It becomes about self protection. Just because it’s not what I would do, it doesn’t make it wrong. Very far from it!
Being from the older generation, I’m finding it tough. Seeing so many people I have known for many years, struggling with poor health then passing away. The world is changing fast now. Who knows what will happen tomorrow? It’s Probably the most chaotic I have seen in my lifetime. So many things happening now, that could have been avoided with better planning. The collapse of the NHS being a major one. Shockingly, I see little concern from any major leadership, either national or international. More worryingly I see nobody other than President Zelensky in Ukraine who even looks like a leader!
However nothing will take away my personal focus from cancer. After hearing how poor the leadership is at Macmillan Cancer Support, we now hear that Cancer Research are cutting back on a lot of their work. As I have said many times, the sector has been self-serving for so long. With everyone ultimately being dictated to by big pharma. Now more people can see that just throwing money at a problem, with no accountability is not the answer. Most people in the sector continue to be well paid for failure.
My father died of bowel cancer, my mother lived with breast cancer treatment for many years, and I now have my own issues. At least 50% of my friends have also been impacted. Many having died, or living a poor quality of life with side-effects. For sure, we are raising awareness better and more frequently. We have incredible technology too. But sadly the number of people dying from cancer is increasing. I call it the modern day plague! 30 million people will be directly affected in their lifetime in the UK alone. If this isn’t something that demands urgent action, I don’t know what is? But nothing from any leaders. Just more meaningless letters signed by charities to Government. Also waffle about another 10 year plan that nobody will live to see the result of.
It is time to understand that the NHS and corporate charities have absolutely NO say in what is happening now. The days where they spend millions on ‘political influencing’ should be finished. We have to ask, what they are actually achieving other than employing many people. Unless we change the way we work in the sector, death rates will increase even further. I am writing this after hearing about the death of the wonderful Olivia Newton-John from metastatic breast cancer. We are still mourning the incredible Deborah James too. How long must this continue, whilst the key players sit on their hands and pharma rub theirs with glee?
As always, these are my personal views based on experience. Please feel free to join the discussion by adding your comments below. I was a massive fan of Olivia Newton-John and I couldn’t publish this piece without adding a little video of her through the years.
Chris, as usual your posts are always honest and speak directly to your audience. There is a lot of talk of support (on TV/social media) from the big cancer charities but very little action. As you report, patients are slipping through the net to their death, either from late diagnosis or no diagnosis when they raise a concern. I meet them regularly in my work as a cancer coach. I was also was ignored when I inquired about a lump in my breast and was told ‘it is probably nothing’ resulting me losing a breast a year later. My diagnosis was over 25 years ago but sadly it is still happening that patients are not being listened which leaves them helplessly facing a poor prognosis and terminal outcomes. I feel angry that you friends have had to endure this Chris. They should not have to pull down the shutters and close off to the world but instead be offered appropriate help to cope with last days. The advert says, “we are with you every step of the way” but we know these words remain hollow and meaningless without action. Dr Dianne Dowling
Thanks so much for your wonderful support Dianne. What we have been doing for so long has brought so little progress for most patients. Costing so much money and resources. Just like the NHS, our cancer work is no longer appropriate, from top to bottom. Return on investment is just not justified. We cannot continue with so many independent links in the cancer chain. All doing what suits them, and very little accountability.
Yes, my friends are broken by their experience and as you say, unfortunately there are many more in the same position. I’ve mentioned frequently that I believe we have regressed at least 10 years. Innovation being blocked by out of date ways of working.
Indeed always love that “we are there every step of the way!!” I will continue to poke this bear for as long as it takes.
Reading your blog today, I’m so sorry things are emotionally tough for you at the moment. A lot in your blog resonates strongly.
My father also has had cancer for 15 years, first NHL and now myeloma. His health has deteriorated a lot over the past few years, and he is now isolating himself from most people, other than my mother…self protection for sure, he just finds everything more challenging to contend with now. You are right, everyone deals with it in their own way. This can and does change though, so I check in regularly but take his lead, even though its difficult and I want to see him more. He knows, as I’m sure your close friends do too, that you will be there when/if needed. My Dad’s views re the NHS and charity sector are very similar to yours. He has now been told he has another ‘new’ consultant.. his 5th in 5 years and it takes time for him to feel confident and be able to trust them. My brother was diagnosed with leukaemia at new year…so I can definitely empathise with how you are feeling at the moment with news of your close friends.
Being an Oncology nurse and having worked in the NHS and charity sectors, doesn’t really help, if anything it makes it more scary in the current climate.
I read your blogs with interest. I hope this helps a little to know others out there are listening and care. Your blogs help me too.
Firstly thank you so much for your kind words and so sorry to hear about your own family issues. I write to provoke a conversation on things that many are unaware of. With your own professional experience you will know what I am saying. To let things get to this stage is a national disgrace and I will do my best to break this rotten system. Delighted to hear also that my writing helps you too.
Dx’d 11 years ago w/a very rare lung disease & CA. Your article is how I’ve felt since day 1. No Tx then or now. Chemo for 7 years to maybe slow it ruined my vision. O2 need grows. If medicine wasn’t for profit someone would’ve figured something out by now. No profit no txt.
So sorry to hear about your own experiences Cathy. Unfortunately this is happening around the globe and whatever health system we are in. It is a global disgrace and is being totally ignored.
Well said Chris! Great piece!
I agree about the lack of leadership as well. Doesn’t bode well does it?
Worrying times indeed if you have an illness… All care seems to have gone up the Swanee River too! Sad. Sorry about your friends. It’s hard to go through xx
Thank you for your kind words Jane. Healthcare is now a real lottery. I hear daily from people in the NHS and patients. Truly worrying for all of us. Worse to come unfortunately as no politician interested in Health
It is a lottery. Unless anyone has witnessed it personally or through a close relative or friend, they really have no idea how bad things are… fortunately for them!
Terrible anxiety for any patient going through anything other than routine. A+E is frightening and cancer etc very hit and miss. Really don’t know where we go from here? But doing nothing is not an option.
agree. I think there will be many having a late diagnosis as a result aswell. The repercussions on patients not yet in the system are not good & it seems with cancer, the care@home doesn’t exist. No face to face courtesy visits from gp’s or district nurses. List could go on.