I have not yet had my final diagnosis. Are you interested in an ongoing contribution? 

Hi Flora, yes we're looking to hear about your memories of any key moments, so maybe you can tell us about when you first noticed something or about going to your first appointment?  Anything that you feel you can share with us would be perfect.

Thank you

Hi Sarah,

Here are my thoughts for what its worth.

Going for tests didnt bother me but it was the waiting that was the worst part. I often had to wait two weeks for results and those two weeks seemed to take forever, even though I kept busy. I would just clarify this by saying this was only when I was in the early stages and waiting for information whither I had cancer or not and then what stage it was at.

I will never forget the day it was confirmed I had prostate cancer. I was pretty certain it would be confirmed but when I heard those words, "I can confirm you have cancer"The world seemed to stop for a few minutes and allthough my consultant kept on talking, I really wasnt taking in what she said. My first thoughts were, I had better get my will sorted out, then, I shant see my grandchildren grow up or get married and start their famalies, and then even worse, My wife may end up a widow. All this flashed through my mind in seconds but then I was faced with how to tell my wife I had cancer.

I drove home with my mind in a whirl, probably shouldnt have been driving. I had been certain I would get bad news for a few weeks  so I had been telling my wife each week a bit more so when I finally did get home, she took it far better than I could have ever hoped for. She has since told me, that as I am such a positive person who never lets things worry him, she just knew I would beat it. Talk about womens intuition.

Once those first thoughts were done with, dealing with the bad news and even the treatment wasnt a problem.

6 weeks after I has finnished my radiotherapy I had to go to the hospital for the results of my blood test for my PSA. When my oncologist told me my PSA had come down from an initial level of 70 to 0.05, i had to ask him to repeat it. I can honestly say, I came home with a smile a mile wide and people seeing me probably thought I had won the lottery but this was even better for I honestly feel the treatment has saved my life. I just couldnt wait to tell my wife and family.

Having cancer has certainly changed the person I was and I honestly believe has made me a better person who appreciates life more than ever before. I am doing things now that I would never have done before like becoming a member of this friendly forum and am on the committees of three other charities/cancer groups.

Hope this helps, best wishes to everyone at Cancer Chat, Brain.

Hi Sarah ..... what is the project your are doing and what will it be used for?   I hope you dont think that I am being pedantic but when you say our stories wont be shared outside of CancerResearchUK - anyone anywhere can access the site and read them surely or am I being dim?  Max x

Can this be seen by non-users?

Sorry its a bit long, overdid it a bit.

When you first noticed ‘something.’ That first awareness that something wasn’t quite right.

Around this time last year (August 2014) I started to notice my tongue was stinging.

By September the sting was getting worse, it was not painful, just a sting, which seemed to spring up more times a day as time went on. One night while watching TV, I happened to feel my tongue, then I felt a lump the size of a small grape. I shot up to look in the mirror and was then able to see this lump on the bottom of my tongue, most of it was inside the tongue, I could only see an outline, there was a tiny amount of blood.

2. Did you share your concerns with anyone? What was that point when you acknowledged something might be wrong?

I told my mum and she said I should book a doctors appointment, so that was the first thing I did. I knew the lump was not normal straight away and after looking online about lumps in the tongue, most of the pictures that came up showed tongue cancer, and mine looked very similar, so I considered cancer what a possibility but at the same time did not think it was possible at age 23. I did not smoke, and hardly drunk, I was not overweight, everything was in my favour.

3. Your memories of that first appointment.

At my first doctors appointment, the doctor had a look at the lump, she said she was unsure of what it could be, a student doctor also had a look and was unsure. The doctor then went to get a senior doctor, and he was unsure as well. I thought this was a good sign. The first doctor asked what I wanted to do, get it checked at a hospital, or wait two weeks to see if the lump would go away, I decided to wait two weeks, hoping it would go away with the use of mouthwash. It did not, and two weeks later at my next appointment the doctor booked a hospital appointment straight away. I was starting to worry at this point that it could be something bad.

4. Going for tests

I was sent to the hospital to see a consultant, he had a look with a light in my mouth, had a feel of the lump and my neck. He then sent me for an ultrasound straight away, and then said I would need to come back in a few days for a biopsy, for some reason I knew then it was going to be cancer, not sure why, but I just had the feeling.

5. Waiting for results

I had my results within a week of the biopsy, over the period of the week waiting for the results, I was in the mindset that I was too young to get cancer and all they had to do was pop the lump, as it was just a cyst. In the back of my mind I feared the worst but ignored this as much as possible getting on with work.

6. What can you recall about getting the results? Maybe it wasn’t the bad news you were dreading?

As I walked in to see the consultant again, he just came out with it straight away after saying hello, “Its bad news I'm afraid you do have cancer”. I felt very numb after getting the results, like it was not possible, but I was not upset, only angry that this had happened to me, I had done nothing wrong yet I seemed to be getting punished. I just could not understand it. Once I had been told all I wanted to know was what they were going to do about it, and how long it would take to do this. 

7. Telling loved ones “it’s cancer”. How did you share the news with friends and family

I told my dad I had cancer, and then my mum, but only told her it was a tumour, that had to be cut out. She later found out it was cancer and was very upset, but once the consultant had spoken to her at a later appointment she was a bit better.

I told some friends, some of them were very supportive, others have not spoken to me since. The supportive ones check up on me every now and then which is a great help.

8. Coming to terms with having cancer.

All I could ask is why, and how long my life was going to be now. I used to plan my life in decades, now I plan it in months. Once I have reached a year after diagnoses, I will relax a bit.

9. Coping with treatment

My treatment was very easy compared to others, I had to recover from three operations, and the first few days/weeks/months are difficult, especially the first time you try to eat and swallow, but I found just getting on with it, not thinking about it, as much as possible, is the best way. I did not have any other treatments and am very grateful my cancer was caught early enough for this to happen.

10. Are you living with cancer or perhaps you’re trying to get back to normal? Are you coming to terms with the loss of someone close?

It took my about six months after treatment to start to feel normal again, At the same time I never want to forget the experience, It has taught me how valuable life is, and to appreciate the small things in life, not to rush, and take each thing life throughs at you at a time. 

When I was told in Janurary no more cancer was found, I was very happy, it was like life had been reset, I was a new person.

11. What is life like now? What are the thoughts which are uppermost in your mind

My life is pretty much back to normal now, apart from a lisp and a bit of a stiff neck, I am able to live a normal life without much trouble. My consultants check me every month and I can not thank them and the NHS enough for saving my life. I consider if I had never noticed my cancer, would I still be alive now, and I also fear the cancer will return, but hope though healthy eating and a more calmer and slow life it wont. In a sense being in my early 20's I have no children or family of my own it is easier.

I have never been upset or shed a tear over cancer, somewhere in my mind I have a lot of anger and upset, but I don't ever go near this if I can, I focus on the fact that I am alive, have been very lucky, and want to make the most of my life. I hope we will soon find a way to destroy cancer, so that future generations will never have to face it. It will happen, in time. 

It was both sad and inspirational to read your story Space ..... you are so young to have dealt with your illness and to have gone through so much with such dignity.  I am glad that you now feel your life has been enriched by this experience and have such admiration for the wonderful team who treated you.

As far as I am aware, other non members from all around the world can see our stories just like we could prior to 'signing up'  If you google cancer chat forums you can access many sites and read the posts previously put by others.  You need not join to view, only if you want to join in with discussions or access other information.  I wonder if the Moderators forgot to put a link on this thread so that we could answer them privately.  I am sure they will let us know.

Sending love x

Many thanks Max,

There are so many forums out there, I tend to stick to UK ones as they seem to do things differently in the US.;)

:) Good wishes to you.

This one's a lovely one, I have met some great friends here and hope you have too. We all need support at times and its good to chat about other things too and set the world to rights lol!  So pleased for you Space and glad you have made it through, your family must be overjoyed. Sleep well x

Hi Max, we are looking at using quotes to create a narrative of a patient journey through cancer. Sometimes it's more powerful to understand from hearing people's stories than for us to just explain the processes involved. We have no specific campaign in mind as yet but would hope in the future that we could - with your permission, produce something which we could publish and share more widely. I should have said we wouldn't share your personal details (I have now edited this). If we do want to quote you or share your stories we will always ask your permission first and they will remain anonymous unless we had permission from you to use your real name.

I know what you mean about forum content being public, but I wouldn't want you to ever think we would take what you have shared on Cancer Chat in good faith and suddenly find it popping up on Facebook or on the side of a bus.  We would always ask if we wanted to share anything you post on the forum anywhere else. I hope that makes a bit more sense and once we have something more specific in mind we will let you know.

If anyone wants to email us privately please do so at cancerchat@cancer.org.uk

Thanks

Sarah