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.

Dylan - Macmillan 9 months ago in reply to ColinS62

Hi ColinS62

Thank you sharing some of your journey here. A big reason why this community exists is that we recognise that loved ones may not fully grasp the depth of our experiences and emotions. It can be very helpful to connect with people that have gone through a similar experience. I can see on your profile that you are part of the Prostate cancer forum. I hope you have found that helpful.

That is a long wait to see a psychologist. Have you been able to speak to someone on our Support Line? Our Support teams are available 7 days a week, 8am-8pm on freephone 0808 808 00 00, email or live webchat. They are there to chat about how you are feeling and they could also signpost to other forms of support that may be relevant while you wait.

I hope you can get the support you need soon, ColinS62.

Take care,
Dylan
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DME54 9 months ago

I was diagnosed 2021. It was early stage but grade 3 aggressive. Told that this is very treatable, so i didnt worry too much. However,2024 and after chasing treatment, bcg or anything else, to date ive still not had anyvtreatment
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DME54 9 months ago

The drs and nurses on the ward are great, but!! The lack of communication, no answers to my asking why no treatment. Lame,pathetic excuses that made no sense.last august, went through PALS, was connected to a urology manager. She was going to find out what had gone in as this was unacceptable.To date, still no reply. My hospital, i found out, has never yet had a CQC report any better than " needs over all improvement. If id have known id have chosen a different hospital but was told as its cancer, i have to go to my local one. Its lie. Recently found out i could've chosen. So now after nearly 3 yrs of NO treatment its now muscle invasive bladder cancer and only way forward is radii
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DME54 9 months ago

Its now muscle invasive bladder cancer and the only way forward is radical cystectomy to remove the bladder, uterus,ovaries and part of vaginal wall. My CNS is very nice, but totally useless.i feel very neglected.its only since ive put my foot down and literally told consultants exactly what i feel and think of them and their none existant communication, that they seem to have pulled their finger out. Im disgusted, angry and my daughter is draughting a serious letter of formal complaint which will be proof read by a solicitor friend. Im just glad very few have had my experience. My GP however is brilliant and is keeping a beady but regular eye on me..thank god. Ill be glad when its over.

Deb x

Its good to talk.
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Steph - Macmillan 9 months ago in reply to DME54

Hi DME54

It's Steph here from the Community team. Thank you for taking the time to comment on Dylan's blog, although I am sorry to hear of your experiences.

It is good to read that you are confident in your GP and have felt that the staff on the wards are great, but it's worrying to read about lack of communication and explanation around your care plan.

Your needs are important and it's positive that you're speaking up for yourself. Your feedback should help to improve services in the future, so it's good that you are making the effort to send an official complaint. In case it's helpful, you can find some more information about the NHS Complaints Process here.

I'd encourage you to introduce yourself and share your experience in the bladder cancer forum so that members can offer you some support. If you're not sure how to start your own conversation, 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.

We also have a Macmillan Support Line if you want to talk things through with someone who is there to listen. Our Support Line teams are available 7 days a week, 8am-8pm on freephone 0808 808 00 00, email or live webchat.

Please do let us know if you have any questions or need further support with anything at all. I hope the Community and Macmillan show you that you don’t need to go through anything alone.
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