If I could go back to the day of my cancer diagnosis

5 minute read time.

1 Feb 2024

If I could go back to the day of my cancer diagnosis

The moment of a cancer diagnosis can feel like stepping into uncharted territory, bombarded with unfamiliar terms and overwhelming emotions. As we approached the end of 2023, we posed some questions to the Online Community, inviting members to reflect on the day of their diagnosis.

“If you could go back and speak to yourself at the time of diagnosis:

What words of comfort, advice or encouragement would you offer?
What lessons have you learnt that you wish you knew from the start?
What wisdom or guidance would have made a difference?”

Community members replied with some profound insights and reflections. Here are snippets from some of the members’ responses.

Reflections from the Online Community

“When you are first diagnosed with cancer you are plunged into a whole new world with very little understanding of it. The doctors start throwing around words you have never heard of, and you sit there wondering what questions to ask as it is all so overwhelming. I would advise taking a notebook and someone along with you as it is hard to recall so much info in a stressful situation. Jot down as much as you can so you can reflect on what has been said. Don't be afraid to ask questions especially the big one 'what is my prognosis?" You can spend hours worrying otherwise that might not be necessary.

Understand that your treatment may be a long journey which can be difficult but in the end, there is definitely light at the end of the tunnel. Keep positive and distract yourself as much as possible while waiting for test results as nothing is gained by worrying about it. Hard to do but distraction helps.”

Community member, Life after cancer forum

“My husband is 12 months since they found he had oesophageal cancer. I think the main thing we would tell ourselves is to push for the start of the chemo. They found it on 30 December last year and yet we didn’t start chemo until 8th March! It would have been a week later as the oncologist was going on holiday, but I pushed for someone else to sort it. They spent a long time looking at it. So much so that the scans showed it not invading other structures, but due to the delay, by the time of the operation they found it had wrapped around the aorta and if it had been left longer would have made surgery not an option. We are now just starting 25 days of chemoradiation as the margins from the surgery weren’t clear. Also, it is a marathon not a sprint and everyone needs to look after themselves including the carer.”

Community member, Cancer chat forum

If I could go back in time I would have got my symptoms checked out earlier. Once diagnosed I would have put myself first instead of trying to fit my investigations around work. I would have taken time off instead of working until my surgery date. At the time, I was very stressed, in pain and obviously distracted. I had trouble sleeping and lost my appetite. I didn't have healthy coping strategies. I had work pressure as I needed to take time off.

I have since read around the subject of the mind-body connection. My cancer abruptly transitioned to aggressive (my hospital letters state this). I would be very interested to know when that process started and if I went back in time, would I be able to influence a different outcome by looking after myself better? I became stage 4 within 4 months of diagnosis.

It has taken me a long time to realise that I put everyone before myself and that is not a healthy way to live. As the saying goes - if you don't make time for yourself and your health, your body will force you to make time for your illness (or words along those lines). I would be a lot kinder to myself if I could go back in time.”

Community member, Emotional Support forum

“I would say recovery from major surgery can be a rollercoaster of emotions. Accept that some days/weeks will be much better than others. Listen to your body and go with whatever it is telling you. If you need to rest you must rest. When you feel better perhaps think about a gentle hobby you can do to help pass the time or provide motivation. I have learnt to be more relaxed and patient. You can gain a lot of mental strength going through cancer. I do wish more medical help had been offered. It was so lonely being at home alone recovering during the pandemic. That was the lowest point for me as I had no help from the GP or the specialist nurse. I did receive support from being part of this community and that has meant a great deal.”

Community member, Emotional support forum

We’d love to hear from you

If you would like to take a moment to add to the discussion, feel free to post your reflections or thoughts in the comments below. Your shared experience and insights can offer invaluable support and encouragement to those who might be at the beginning of their cancer journey.

You are not alone

If you are struggling today and in need of support, it's important to remember that you don’t have to go through this alone. Someone at Macmillan would love to chat with you. Our support team are available 7 days a week, 8am-8pm on freephone 0808 808 00 00, email or live webchat.

Peter E 9 months ago

Taken aside with my wife and told that tonsil cancer T2N1M0 had been diagnosed.... very treatable with chemoradiotherapy.... but that the treatment was brutal and very difficult to bear...I feel that the terminology used could have been enough to make some decide against chemoradiotherapy.... challenging and very challenging would have been more apt.
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Dylan - Macmillan 9 months ago in reply to Ive seen the light

Hi Mad man,

Thank you for commenting on my blog.

Im sorry to hear that you have cancer in your spine and prostate. I wanted to leave a reply here to let you know that we sent you an email this morning with some info that you may find helpful. Please know that Macmillan and the Online Community is here for you so feel free to reach out when and if you need.

Best wishes,
Dylan
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Dylan - Macmillan 9 months ago in reply to Gemmary

Hi Gemmary,

Thank you for sharing that link. I'm glad you found it when you did and Im sure other members will find it helpful.

You make a very good point here, all the focus can be placed on the start of a cancer journey and the treatment that is needed without much being mentioned about how to process things after treatment.

We have a "Life after cancer forum" which is dedicated to those kind of conversations.

Best wishes,
Dylan
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ColinS62 9 months ago

When I was diagnosed in July 2023 for prostate cancer my wife thankfully was with me. I was shocked at the time but my first concern was for my wife and our adult sons. I don’t think I took it in and just never asked the consultant enough questions. I did a lot of reading over the weekend following diagnosis about options and made decision after lots of discussion with wife and the lads.
I decided on surgery to remove prostate. Had surgery in August and it wasn’t until after did I start to process what had actually happened to me in the space of 4 months. Since surgery psychologically it’s been hard and emotional. My 3 month follow up PSA showed no detection of cancer. Brilliant. Everyone thinks you’re all OK your cancer free. Of course it’s great news but that does not take away how I feel. Family and friends can’t see inside what going on in my head. Things like did I choose the right treatment. I feel like of a man. My feelings about myself etc. been referred to see clinical psychologist as they think I’ve PTSD from trauma. Waiting list is long about 4 month wait. My point is I’m not ungrateful to anyone in health service, not least of all my surgeon and nurse and family. But how I feel is real to me.
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Starlady7 9 months ago

I felt dreadfully alone. I had a pulled muscle in my thigh that wouldn't clear up. It got better when I rested it for a few days but it always came back. I left it for months before I went to the doctor. (The surgeon later told me that at least half the people in her waiting room would say the same)
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