One of the greatest joys I find with this site, is sharing other people’s experiences. As we mention frequently, everyone’s cancer experience is totally unique. So it is always helpful to hear from others and understand how they are impacted. Most of us think that we are the only one going through what we do, but inevitably things are much more common than we might believe. I would like to thank Jane Hatfield for sharing her very personal feelings as she deals with her own cancer diagnosis.
‘Stay positive’ is a phrase I hear a lot – from well meaning friends and colleagues. I happen to be a very determined person and I am busy getting on with my life – working (now part time) in a senior role I enjoy, parenting two young children (9 and 12) being a (flawed) partner to my wife, enjoying going out – Covid allowing. I am also living with a terminal diagnosis of ovarian cancer. I am 52 and my parents are both (thank goodness) alive and healthy in their 80s.
I try not to speculate or think ahead too much, but I can feel bitter and angry that I wont get the 30+ years that I blithely assumed I would have ahead of me. Sometimes this has the benefit of me appreciating what I do have more than I did before my diagnosis. It also helps me live more ‘in the moment’ which I appreciate. And I am lucky – I am not depressed – but I take a low dose anti-depressant just in case. It seems to me to be sensible (positive even) to ensure I do not have to deal with depression/anxiety on top of a physical illness if I can help it.
Because it seems to me that that as the American Cancer Society eloquently puts it ‘Sadness, depression, guilt, fear, and anxiety are all normal parts of grieving and learning to cope with major life changes. Trying to ignore these feelings or not talking with others about them can make the person with cancer feel lonely. It can also make the emotional pain worse’. The people I feel closest too now are the ones who can ‘handle’ all my emotions and who I don’t need to just present a ‘positive’ face to. This doesn’t mean I don’t also feel joy and happiness and I can even talk about other things – but if I feel people are glossing over my diagnosis and prognosis – including by suggesting I must ‘stay positive’ I remain polite but inside I shut down. And feel lonely. I know this isn’t their intention. I wonder if their desire for me to be positive is simply (and unconsciously) their way of pushing away their own fear of death and dying. And ironically two of the feelings I am left with when told to be positive is guilt and anger if I am not feeling positive – which only adds to the emotional burden.
I’ve also noticed that it is much easier to ‘stay positive’ when I am not in pain. ‘Living with cancer’ ‘kicking cancer’s ass’ etc is definitely easier when I am not using my usual fairly high energy levels on dealing with sheer discomfort of the cancer and the treatment side effects – constant back pain, uneven sleep, low level nausea, constant medication, constipation – the usual stuff. I have never spent the day in bed – is that ‘good’ (positive?) or ‘bad’ (not resting enough). It is neither. It is just me. I haven’t changed much since my diagnosis really – I have just been through a more extreme range of emotions and experiences than before – lucky me in many ways that I reached my 50s without dealing with such grief. Though a few relationship breakups had their moments.
Facing up to a terminal diagnosis is important to my health and wellbeing however long or not I have to live. I am not in control of my cancer but I can take some control over my treatment options (limited as they are) and sorting out my finances, talking and writing to my children about my life and their feelings, spending time with people when I can, planning how ideally I would like to die and where I would like my body to be buried. Actually for me this is all positive – it’s a way to feel I have some control but it also helps me from being in denial – something that has its uses at times (and it far easier when I am pain free) but is ultimately misleading. I do have the advantage of knowing I will die sooner rather than later – and this gives me the gift of time to plan, to talk, to accept. So I end with a plea – don’t push me away by telling me to be positive please. This is hard enough.
I would like to thank Jane for sharing her personal thoughts and experiences with us, many I have been through myself! We wish you well with your upcoming challenges. If you would like to share your own experiences through this site, please feel free to get in touch via the comments below or email link above.
I am guilty of saying, “stay positive”, in a bid to say something encouraging. Reading this post now I know better! We learn everyday. Thanks for sharing
It’s one of the phrases we hear so frequently, and for most of us it really grinds. For many people it is hard to see their situation positively. Also it is not really something that you can switch on or off. Personally I have always been a positive person, but I do know it is no cure for any illness. For me it does however help me to live my life better, and something I’ve learned to control.
We do indeed learn every day which it is why I love to share pieces from others.
Very best to you all, Chris
Thanks Chris for bringing us Jane’s story. Staying positive all the time is almost impossible as it demands blocking out all emotions, achieved partially through medication. Mindfulness meditation on the other hand teaches us to acknowledge our emotions good or bad.
Thanks Dianne! I have been on both sides of that coin and the first is exhausting! Mindfulness got me back in control. Stay safe XX
Great article. Personally I have had had the stay positive message lots of times- but all have been from people who don’t yet have cancer. I don’t know if it helps them avoid thinking about their own fear but it seems a good way to shut down the uncomfortable convo. From Dr’s too
Thanks so much Darlaine. That is exactly my experience too, even recently. The doc mentioned it was incredible how I had lived so long! “It must be your incredible positivity,” he said. I replied when did #Positivity cure #Cancer? #StaySafe X
Language is so important- I seriously dislike some of the ‘blame’ shifting language- you must fight this ect- I’m sure it’s not meant to upset do can only think we need to change the culture around cancer. 1 in 2 people will encounter this, meds and trials see people living 1
We need to talk about cancer a lot more.
Kelly used to say to me “I hate people telling me to keep positive… All I can do is keep on going” That’s why I say to people living with cancer to “Keep on keeping on”
Spot on there Roger. We here it so often but I think it is ‘gap filler’ in the conversation. It seems mostly from people who don’t have direct experience of the disease.
Very probably. I know people found it hard to talk to Kelly without bringing it up so we said to everyone to that unless we breached the subject to just carry on as normal. Until her very last day, she just kept trying to keep on going (even put lippy on each day)
Great post & why saying “Stay positive” to those with #cancer or #COVID or #PTSD for that matter often causes pain. Try empathy or listening or taking action. I stalk joy, daily but I don’t give myself to be positive about anything. Honesty is what I require & appreciate.
Thanks so much for sharing your own experience and views Cissy. It is a phrase that is used so commonly. Not sure that many understand what it means to the person with the disease? This post has prompted a very positive discussion. #StaySafe
The durable framing of cancer in this way means that people say the standard, expected, hackneyed phrases without even thinking of the impact on the person in front of them. They’d be mortified/hostile if challenged on what the implications are.
Nicely put, and I agree totally. Nobody would say things like that if they really knew the impact it might be having. Still shows how we find simple #Communication a real challenge!
Thankyou for sharing Jane’s brilliantly written piece Chris. Such an important message for friends, loved ones & professionals., however uncomfortable they may find it to read. I will be sharing widely. #jane hatfield
It is a great pleasure to share this piece. Jane has a very powerful message. It is such a common issue and is rarely discussed in this way. It is created a very positive debate from all sides of the cancer sector.
We will only learn by sharing our own experiences openly, and that is why I love using this site and mu social-media to help others understand the real daily issues.
Thanks for dropping by, and stay safe, Chris
Excellent blog, thank you for sharing. This is why listening to expert patients like you and so many amazing people who share their experience is so important to help people understand.
In a sector with limited resource, sharing experiences makes perfect sense Sam. Just as you do with your expertise. All of us can learn from these pieces, including importantly, #HCPs #StaySafe
Great blog. Stay positive didn’t work for me at all but I understand that it may work for others. We are all beautifully and messily unique – actively listening and being in the moment is by far the best advice I can give to anyone who is trying to support someone with cancer.
My experience #cancer: Just be with me, don’t counsel, reassure, placate. Ask what my unmet needs are, meet me with compassion & openness. Sometimes help me with my rage! Know I’ll build my own emotional flexibility & resilience.
Thanks for your kind words and sharing your own experience Helen. This is a great way for us all to learn what works or not. Still a very difficult conversation if you have little experience.
I try to stay honest in my reaction to what is happening to me regarding my cancer and Covid. But others expect me to hide my true feelings away (cue Beatles song).
I am naturally open and honest so nothing changed on diagnosis. I was aware other people found talking a bit difficult, so normally I led through the difficult bits.
I do realise that before I was diagnosed with cancer myself, I almost certainly said clueless things to people too. So I do try to have a little bit of understanding.
We both know that positivity breeds positivity and seeing someone as positive as yourself gives others hope. As my late friend always said. “Get up and never give up” #Nicola
Lovely message Keith! You’ve always got a smile on your face too my friend. Nicola was right and that is how I live my life too! Thank you for all the incredible stuff you do.
What a wonderful blog sharing Jane’s story, articulating this perfectly. Whilst I am NED, I have days where pain from side effects is terrible & staying positive is hard. Other days I can cope. I am generally resilient & strong. We need to acknowledge all our feelings/emotions.
Thanks so much for your kind words Caroline! I know Jane will appreciate them too. I think we are both with you there. Sharing emotions is what this incredible #CancerCommunity is so good at! Delighted to enable that. #StaySafe
Thank you Jane for sharing your thoughts and feelings on these words. I must admit, I have said those very same words and perhaps not really thought of what impact they may have. I can now see more than ever how these words may be interpreted very differently than intended. In today’s busy world, if someone shows a genuine interest, I am always grateful because it’s when they say nothing at all that I find the most difficult to deal with and particularly if they don’t look me in the eye, if face to face, which I have noticed when they know there is little hope for us or the news is not good. Maybe I have come to accept that I have no influence over what people say or do but what I can do, is choose my response and how i feel, no matter how it may upset or annoy me. It was when things were at my lowest in hospital and the councillor had been called that I drew strength and some hope from Victor Frankl’s words when he states, “between stimulus and response there is a response. In our response, lies our growth and freedom” when he talks about how the Nazis killed his close relatives, took away all his liberties, applied pain and suffering but they could not take his freedom to think and how he felt. Tough as it is for any us going through pain suffering, I have come to accept that there will be times when the words may not be quite right whether spoken or received and perhaps we are just not very good at dealing with death. I say this on a very sad week, after my sister in law’s mother, aged 94, has sadly passed away, having spent the past 14 weeks in hospital in intensive care. I still don’t know what words will give real comfort. I will not be saying #stay positive. Thank you again Jane.
Thanks so much for sharing your own experiences which are so valuable to the community. Jane has responded herself further down the thread.
Very best and stay safe, Chris
I think positively in many ways, just getting out of bed some days, planting a garden that I may not live to see, buying furniture I may not use for long. Not all positivity needs to be expressed, forced smiles, happy talk or phony pretending that life is just the same.
Very nicely put, thank you for sharing. We all do positivity in our own way of course. Good to find it where we can, particularly in these times. #StaySafe
Very important reflection. There is a need to be able to feel and express whatever the emotion may be and to be given the space to do that by others
Thank you so much Martina, we agree with that totally. It’s still amazing how basic communication can still be more complex than it should?
I want to thank all of you who have responded to what I’ve written. It’s great to hear that many of you found it helpful. I think if you met me you would find me a positive person but that’s quite different from being told I must be positive in the face of terminal cancer! Actually I agree with the person who said he finds people saying nothing the hardest. It’s very disconcerting (and thankfully quite rare so far). Sending you all love and best wishes. Jane
I’d like to thank you again, for sharing your experiences with the community. This post has been one of the most read and discussed in recent weeks. We can all learn something just by sharing our experiences, which it is why it is always important for me to publish guest posts.
Stay safe during these crazy times, Chris X
Wonderful post from Jane. I was a positive person few months ago until I found out Monday that the chemo isn’t working anymore and I have one last chance to try tablet which he said has limited effect especially with Ileostomy. I have exhausted 7 years of chemo. Now I have to face the fact that before long my diagnosis will be terminal and I know that will be soon. I can’t deal with this at the moment, I’m struggling to find anything positive to think. I’m scared, terrified even, low mood, not sleeping, guilty etc. I want to give up but know I have to try this option. Devastated. I want to be here of course for as long as possible me but it isn’t going to happen so thoughts go through my head or maybe best to just go.
Sorry miserable post!
I can’t tell you how pleased I am that you took the time to share your own feelings after reading this post. This platform is a safe place for us all to learn and open up. It is also where you can share miserable posts as well as positive. Unfortunately that’s what you get with cancer as we all know. If ok I am going to contact you directly.
So sorry you are feeling this way. Very best, Chris
Reading all these comments has been really helpful, and I am very proud that Jane’s post has generated so much discussion. I can confirm that she has always been, & still is, a very positive person! I am very humbled by how she is using her cancer to try & help others & by the ripple effect (which I have seen locally after sharing Jane’s post with colleagues & friends) making us all think about the language we use, and how that is heard by people with cancer & other long term conditions.
The comments are continuing to come, which is fantastic! This has been an incredible discussion and so many people have learned something from Jane’s post. You should be very proud, and I hope I can feature another post in the future! Thank you both, Chris
Such an informative read. Thank you for sharing Jane’s story. The ‘p’ word is so misused in relation to those of us living with incurable cancer. This blog will really encourage people to consider their use of language. We welcome kindness and compassion but not the ‘p’ word.
Thanks so much Laura, Jane writes so brilliantly! That post has created an incredible amount of discussion, across many sectors. It really is a great example of the importance of the language we use. #StaySafe lovely lady
A little difficult to stay positive fighting cancer at the best of times, I have found most do, having had cancer myself I know about smiling, being positive, and crying in the shower! With covid I can’t imagine how anyone with an illness that needs treatment must be feeling! SCARED!
Indeed, these are dreadful times for people affected by #Cancer and their clinicians! Nobody wants them to be in this position. We must hope that we can get on top of #Covid19 asap and start dealing with the backlog of cases.
When I was first diagnosed – with months to live – I felt very accountable to maintain a Positive Mental Attitude as my contribution to my treatment. The professionals would bring the science, I had to bring the positivity. Now years later, after years of surprisingly (to the scientists) effective treatment, I feel guilty for feeling low, traumatized and fearful of the future, especially because the science has done so well for me. Surely I should be over the moon.
I fully understand your issue as there seems to be much synergy with our experiences. Having always been a positive person I tried to maintain that for everyone around me. But that became too heavy a load to carry after a few months. I needed professional help as I was going through my transplant etc, and finally was comfortable talking in real terms with my wife and family. Once I had those conversations life was easier for all of us.
There is no answer to how we should be feeling down the line, as we are all unique and handle things differently. Like you I have gone well past my sell by date, so I’m just grateful for everyday, doing the work I love.
Thank you so much for sharing your personal feelings Sarah. It’s all such a learning experience. Please feel free to drop me a mail or contact me through social media ( links top right) if you would like a chat at some stage.
Very best, Chris
Stay Positive is one of the “classics” and is normally said to me by friends leaving my house (pre-covid), work colleagues and conversations on Skype, WhatsApp or whatever the latest p-to-p software fad is. It’s normally accompanied with that slightly “sad” puppy dog look and punctuated with a well meaning sigh. People who are friends, say it and i dismiss it as a well meaning comment because i know they don’t know what to say. I do sometimes wonder though, if for one fleeting second the thought that crosses their mind is “I’m glad it’s you and not me”.
“Chin up” – I didn’t know it was down.
“I’m sure you’ll be fine” – I have metastatic bowel cancer on my liver, in my lungs and lymph nodes. I’m pretty certain i won’t be fine, my oncologist is pretty certain i won’t be fine, one of the finest Liver surgeons in the UK is pretty certain i won’t be fine. However, you my friend who and with all due respect is a successful painter & decorator , is adamant i “will be fine”. As much as I’ve enjoyed our evening and I’d love to agree with you’re post curry and cobra beer analysis, but i think I’ll stick with my oncologists view, irrespective of its morbidity.
“It’ll only last a couple of days”
Some still say this to me after one of my chemotherapy sessions. I am talking about the chemo side effects. One of the worst things i have ever experienced in my life, with a Champaign Hangover running it a close second.
I have chemo currently every 2 weeks perhaps like many of you. It starts on the Wednesday and finishes when they take the pump off on the Friday. 10 days later i am getting to “fine” then 2 days later i am back on chemo and the cycle continues. It’s not a couple of days. It’s 10 days of feeling…. – i don’t have the vocabulary to describe it.
“Don’t stop fighting” – I’m not really fighting, just going along with it really as I don’t have a choice.
“You’re really brave” – no I’m not, I’m scared to death, but i can’t tell you that. If you want to see brave go to the Christie hospital in Manchester and see the kids in there. That’s brave. Then look at their parents, that’s even braver!!
This was a great post by Jane Hatfield and i like this blog by Chris I’ll be sure to look at it again.
FWIW, I had advanced Bowel Cancer which has metastasised and i tend not to say anything on Blogs, Websites as i don’t really read many and stopped reading the major charities websites not soon after i was diagnosed. The only other person i have read about is Deborah James, the woman is incredible.
I find the current narrative of the “large” charities somewhat akin to a begging bowl and i see you have a post regarding the advertising strategy of of CRUK and McMillan. I agree with you’re comments.
Sorry for the long post. Although It has been somewhat cathartic.
Very welcome to the community and thank you so much for sharing your own experiences. It’s quite amazing how cathartic just writing things down can be. I started this site to help others, but it has certainly helped me too!
You have summed things up so well, with your own humour which I’m sure helps you get through your challenging circumstances.
Firstly Stu, I would like to wish you well in these very difficult times for people affected by cancer. Secondly, if you fancy it would like to invite you to write a piece to feature on here? Just drop me a mail through the icon on the top right of site.
Very best, Chris
Yes I’m certainly not a lover of our giant charities as you have read, I often wonder if they are even working in the same area as me?
Thank you for sharing this wonderful article. This is why it’s so important to listen to experienced patients like you who share their stories to help people understand.
Thanks so much for taking the time to drop this comment. It’s very much appreciated and why I continue to do this work.
Very best, Chris