What would you tell yourself on the day you were diagnosed?

Don’t buy anything until you know you need it. 

Not everyone gets ill with chemo. 

You will look five years younger when the grey chemo curls first come through so keep the hair short. 

Buying the new clothes for the flat me is far less stressful than trying to buy a bra for lopsided me. 

It takes a while to sink in and the diagnosis itls bigger than you think! Its ok to not be ok, its not about being tough its about the journey and asking for help when you need it! This is the main is Mental health support 

Take it one step at a time 

So many insightful replies and really useful to remember! 

I found embracing some flexibility helpful. Routine has a place too but there were times when I threw that out of the window. (Still do)

I met a fellow patient on the bus home from the hospital the other day who said "what went well for you today?" I thought it was such a useful question. She said it wasn't about false positivity but she found it led to interesting conversations!

I am 72 next month. There were 2 TURBTs done. I start BCG treatments tomorrow morning, for a total of 6 weekly treatments . 

What concerns the most is...I don't know. 

My dx is T1 aggressive ,  no growth into muscle.

My heart goes out to anyong going through this type of problem. This must now be watched for the rest of my life.

Hello BC26  

A warm welcome to the Online Community although I am so sorry to find you joining us.

The Community is divided up into cancer specific groups and in your case I would advise you to join the bladder cancer group - here's the link you need:

 Bladder cancer forum 

Once you click on the link I have provided and the page opens up, click on "join" on the black banner at the bottom of the page. Once you have joined the group you can introduce yourself in the "New Here - Say Hello" section.

If you need any further help in navigating the Community please do get back to me.

I wish you well with your upcoming treatments.

Best wishes - Brian.

Hi Dylan

What a thought provoking question. 

I am a year into the process and have used the word rollercoaster a few times - a thing I am not that fond of. However I have found that an approach of “well let’s just get it over with” has got me through a few sticky moments (biopsy for instance!).

I had pre-empted my initial result giving by looking at the NHS app - but didn’t at that time understand the importance of the numbers. I did understand however how hard it was for my GP to make that telephone call, would you want to do it?

I would certainly tell myself not to panic!! I did the usual and got onto my solicitor straight away and adjusted the Wills - but at least that is fine and organised for the (long term) future.

I would also have told myself to reach out sooner - I am a person who likes researching (trusted sources) but understanding how it might all fit together is the difficult bit - and that is where the experience of this wonderful group of people comes into its own.  I have gained so much from being on groups on this forum and on PCUK.

Friends and family have been supportive in their own ways but it takes someone who “knows” …..

Best wishes to all

KrisPy

I was diagnosed with breast cancer two years ago and I realise my experience was quite straightforward, but these are my thoughts…

• The initial waiting and uncertainty is by a million miles the worst part of the whole thing and I’m glad I reached out for support from MacMillan as it helped so much in those first couple of weeks
• Surgery and radiotherapy were nowhere near as bad as I thought they would be
• Not everyone has side effects from tamoxifen, be aware but someone once said “don’t look for problems” and I think that is sound advice 
• Don’t spend lots of money on post surgery bras, you may go back to your usual ones, and if you can make sure any you buy are good quality and nice colours with matching underwear so you can still look/feel nice even though you’ve had surgery, it’s important
• Getting thoughts out into a journal every morning helps relieve some of the worry and makes sense of things in a safe way
• Exercise, exercise, exercise… in my opinion there is nothing better for your physical and mental health and the stronger you get the more confident and trusting you become again in your body
• Celebrate your own and anyone else’s achievements and successes post cancer and, if you can, challenge yourself to do new things
• Most importantly, I would tell myself that even though I thought it was the end of my world at the time that cancer was just a bump in the road… it did not mean that my life was ruined forever and nor did it mean I had to accept a “new normal”… it is possible to get through this and move forward and be happier and healthier than ever before

Sending love to everyone. x 

i would of told myself never should i have put a cigarette into my mouth 

Morning Eebee

Thank you for your post - I can empathise with a lot of the content and you have made such a good case for each point.  I will pass on the advice about underwear though!! 
Even with being incurable your last point still resonates….

My best wishes

KrisPy

Never go to your doctor after slipping on icy steps leading  to the house, a sore hip led to a blood test, which led to a high PSA reading, a call two days later asking me to come to the surgery, a digital examination and " you've got a lump on your prostate gland! 

Day afterwards I jumped onto my motorcycle and rode along one of my favourite local runs. Another visit to doctor telling me he had arranged a MRI  scan at the end of the week,  Monday message telling me I had to see the urologist who confirmed the lump and told me what treatment I would be getting, any choices, nope, 20 sessions of radiotherapy  and hormone treatment for two years, a biopsy the week following just to confirm everything.

Next day a bone scan, taking to the guy about my motorcycle ride at the end of the scan he said I think you'll be okay, 

Letter telling me that Radiotherapy would start at the beginning of September, more days out on the motorcycle in-between building a new 30 meter, 6ft high fence up the side of the house and garden. Long walks with our two dogs, still having a good go at life at 75 yo, my doctor raised his eye brow when I told him I was still riding my motorcycle.

They put me on hormone treatment in May, 4 months before radiotherapy started, my GP saying with a grin I've never given a hormone injection to a man before, in my right buttock as well, didn't feel a thing, but a nurse who gave me one in hospital!! it felt like I had been kicked by a horse, "sorry I've never done one of these before" .

All in all it went quite well, the NHS were fabulous, my consultant?

Two 10 minute 'near me' video conference meetings enough said, me in the wilds of North West Scotland, him in Leeds. 

Told the treatment would have some effects on my body, yer right, effects saw me turned into a 10 stone wimp, sessions in the gym, walking would be a good way of building my strength up, but nothing prepared me for what I am today, still cheerful about life, no more 30 kg lifting material, only once out on the motorcycle and it's now been 18 months or more sitting in its own little home waiting for me to open the doors again. 

If I could turn time back I'm pretty sure I wouldn't go to a doctor who seemed to be in a rush, he works daytime in the surgery and two or three nights on call. 

As for the icy slippy steps they are still there, still waiting to catch me out again, but I'm more clever now I hang on to the metal hand rail.

Life, although, is great but recently I have been diagnosed with Hypotension, which has really put the motorcycle to bed,  the wife thinks I'm being silly when I stand up quickly and start to wobble about the place and laugh, I love life  and sitting in our town park watching life and people go by, is joyful.  The sun has been nice to us this year so I'm still walking the dogs not so fast now though, the Dalmatian I think understands me, while the small collie cross is still up to mischief at 9.5 yo. 

Looking back I think everyone involved in my recent life have been good, doing their jobs with real enthusiasm, skills and knowledge.

My only query is do I still have cancer, my 3 monthly PSA tests have been O  neligible, my last test is in September. 

As Brian said "always look on the bright side of life" 

Hope this hasn't  been to long 

Cyril

PS, Maggie's and our local Macmillan group have been fabulous.