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.

Mumofthree 9 months ago in reply to SMP

Hi SMP your post made me sad do you have support at home would you like to chat on dm? Happy to talk it through. At the beginning when I was first diagnosed I didn’t tell anyone. I actually physically couldn’t talk about it. The shock and all the appointments, change of plans I found totally overwhelming after not being sick ever to being thrown into turmoil of all this medical intervention I found very tough so I empathise completely. Let me know if you’d like to chat. It will be worth it in the end. Take care. Mx
- Cancel
- Up 0 Down
- Reply
- More
- Cancel
Mumofthree 9 months ago

I would tell myself to stop, take a breath, I didn’t I couldn’t talk about it at all, I continued work in fact I increased my work load in order to ensure I didn’t impact anything as I left to start treatment. I eventually told my boss and my direct reports but they were all under instruction that they couldn’t talk to me about it I would update them and they could ask questions via messages only. Sounds funny now honestly. But the reason was we are all very tight as a team I honestly have the best team ever and I knew I would get emotional if I spoke to them directly. Messages allowed me to read the questions and reply in my own time when I was ready and could cope with the emotion privately.
On reflection I did a great job at work preparing for my sick leave that the chemo has forced. But I did a rubbish job at preparing myself for what was to come.
I have been forced to reflect on how I never put myself first which is not good to be a better leader, mother, partner and daughter I need to take time for myself and look after me too and show that as an example to my daughters and my team.
I have to learn that this cancer journey is a marathon it’s not a quick fix and the path will change which I struggled with at first. Always wanting to know what’s next. But we don’t always know what’s next until we’ve completed each stage and know what’s worked. That is very hard to live with, not having a plan is scary but doable.
- Cancel
- Up 0 Down
- Reply
- More
- Cancel
Mumofthree 9 months ago in reply to Mumofthree

Hi smp just read some of your other posts. You have this covered I am in awe of your approach and research. You are asking all the right questions and you definitely have the support. You will make the right decision for you I’m sure. Good luck with everything and offer always open to chat.
much love. X
- Cancel
- Up 0 Down
- Reply
- More
- Cancel
Vairon 9 months ago

The day I was diagnosed, the consultant said that they would aim to give me seven good years - I am coming up to six years and my PSA is rising. Waiting for it to rise sufficiently to go for a scan.
He also said that we were in uncharted territory- have never understood why it was uncharted. I was not the first and I won’t be the last to be diagnosed with prostate cancer.
I will take my next treatment, but the outcome will be what it will be.
- Cancel
- Up 0 Down
- Reply
- More
- Cancel
The Aitch 9 months ago

I was diagnosed with metastatic melanoma in August 2023, after my GP referred me in February 2023 for a groin lump. My diagnosis was via the "Vague Symptoms Pathway". In Sept 23 I had a groin dissection which is still healing in February 24. Now I have 2 brain tumour metastases.
- Cancel
- Up 0 Down
- Reply
- More
- Cancel