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.

Steph - Macmillan 9 months ago in reply to Ricepud

Hello Ricepud

It's Steph here from the Community team. Thank you for commenting on Dylan's blog, although I am sorry to hear that you have been through such a rollercoaster of emotions.

It sounds like you have been through a lot and I hope it is helping to be able to talk through your feelings with members of the breast cancer forum.

Your needs are important and it's positive that you have chased your healthcare professionals and asked questions whenever you have needed to. Please remember that our Support Line teams are here for you too. Our Support Line teams are available 7 days a week, 8am-8pm on freephone 0808 808 00 00, email or live webchat.

As part of our online cancer information pages on diagnosis, we have some guides on talking to your healthcare team and on questions about your diagnosis.

Take care and I hope you will continue to find comfort from the Community, Ricepud.
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Steph - Macmillan 9 months ago in reply to Ive seen the light

Hi Ive seen the light

My name is Steph and I’m part of the Community team here at Macmillan. May I wish you another warm welcome to the Online Community, I hope you will find it to be a safe place of comfort and support.

I was sorry to read about your cancer diagnoses and for how your experience has made you feel. I hope you find it helpful to be able to talk to others on the Community. Do you have any other support around you at all?

Whenever you’re ready and feel comfortable doing so, I’d encourage you to post a new message in one of the forums so that members can offer you some support.

You can find our supportive prostate cancer forum here

To join, follow the link in the forum name above and click to join in the banner. Please click +new (or + on a mobile) to start a new post. There’s some help available here if you get stuck, or message us back and we’ll support you further.

If you’d like to talk anything through with someone at Macmillan, I’d encourage you to contact the Support Line for emotional, practical and financial support. Even if you just want to chat with someone who is there to listen, I’d really encourage you to give us a call. Our Support Line teams are available 7 days a week, 8am-8pm on freephone 0808 808 00 00, email or live webchat.

There’s also some information on the Macmillan website here for when you’ve recently been diagnosed which you might find helpful to have a read through.

Please do let us know if you have any questions or need further support with anything at all. I hope the Community helps to show you that you don’t have to go through anything alone.
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Steph - Macmillan 9 months ago in reply to ellie 73

Hi ellie 73

Thank you for taking the time to share your experience in response to Dylan's blog.

It's positive that despite everything you have been through, you have learnt so much and refuse to allow cancer to define you.

Thank you for all the support you share with others here on the Community.

Take care.
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Ive seen the light 9 months ago in reply to Steph - Macmillan

I've got cancer in my spine and prostate. What's the point going on ,they might as injectme
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Gemmary 9 months ago

Not so much the diagnosis day, but my fear was after treatment finished, and I felt abandoned!!

This paper was a godsend. It needs to be more available.

www.workingwithcancer.co.uk/.../After-the-treatment-finishes-then-what.pdf
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