What a whirlwind.....

User

Posted 15 Feb 2021 at 13:56

Well I had a PSA test back in 2018 as my Dad had Prostrate Cancer and I thought at the young age of 53 it was a good idea. PSA was 1, no symptoms and I felt great. In 2019 my mum died so life was manic for a while and it did not settle until the December and then Covid hit us.

In December 2020 I asked the GP for a PSA test as I was finding it hard to maintain the flow and start but felt physically great, so I had a PSA test on the 30th Dec. On the 5th Jan 21 I was in A&E with bladder retention as my prostrate had decided to strangle my pipes. The PSA test from the December came back as 10.7, a digit exam in A&E was a concern so I came away feeling a little worried. 5 days later an MRI scan, 6 days later a biopsy, four days after that a full body bone scan and then three days later a Flex-cystoscopy.... credit to the NHS and Addenbrookes for fitting me in so quick.

My consultant phoned me Friday 12th Feb with the news I have Prostrate Cancer in 14 of the 15 biopsy's, it was not in my bladder :-) but in my pelvic bone :-( . Due to cancer being in my pelvic bone the only treatment is hormone treatment - which they put me on when in A&E just in case and I had my first hormone injection last Wednesday ( repeated very three months). I was told there is no cure for me, just management and if the cancer behaved and my body worked well with the hormone treatment then I have years not months..... I have my CT scan this Wednesday to check my thorax, pelvis and stomach and then I get to see the Oncologist. I have three specialist Nurses assigned to me which is great.... not sure I need three but heck happy to oblige.

My wife has been on the journey with me from the start and she has been amazing. My daughters live with my ex-wife so we told them on Friday afternoon and my in-laws and brother on Saturday...... Head is all over the place and to be honest I did not expect to be here at the age of 55...... but then again who does....

BUT.... we have a journey to go on and no matter how long or short, it will be filled with fun, a positive attitude and some serious steaming dollops of good humour. There are times I find it hard..... times I worry for my wife and daughters and times I just say the F word a lot....... seems to help although my dogs do look at my funny.

Anyway.... here to help anyone I can and keen to hear your updates, journeys and who know's, if anyone is around Cambridge way and we are allowed, meet up for a beer or three - medication allowing :-)

Please take care and be safe.

User

Posted 15 Feb 2021 at 15:35

Hi Nick,

A nice refreshingly upbeat post. I am a bit luckier than you in that mine should be curable (we never know for sure). Life would be better without cancer, but sometimes we have to just accept what life throws at us, but at least we can choose whether to be miserable or happy.

I know there will be difficult times ahead, but good luck keep posting, a positive attitude like yours can help uplift other people in a similar situation.

I'm looking forward to a draught beer, fed up of bottles.

Dave

User

Posted 15 Feb 2021 at 19:34

Hey Nick....I'm another Nick who has been recently diagnosed and started HT at the start of Dec (with a view to RT to try and wipe it out......though still got all options open with that, I'm doing a lot of digging (espec. on here) and have quite a few q's for my specialist nurse once she touches base again!), and had the 28 x tablets, 1 monthly and 1 3 monthly injection so far.....how is your HT going ? I'm having quite a few hot flushes and aches, particularly in the shoulder area, and also elbows ?! Weird. Other than that its going OK to date !

All the best and keep us updated......and agreed we really, really need some proper draught beer when allowed again ! (though the Exmoor Gold and Wychwoods 'Dry Neck' are keeping me going OK at present...)

Cheers!

Nick

User

Posted 18 Feb 2021 at 22:44

Here is a post from about a year back. It is now a bit disjointed because some replies from "Andrew" have been deleted, but you will still see the general optimism from some of the contributors.

https://community.prostatecanceruk.org/posts/t23226-It-s-not-a-big-deal---is-it

So all I can say is keep enjoying life, no point in being miserable well not unless the beer runs out.

Dave

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User

Posted 15 Feb 2021 at 15:35

Hi Nick,

I know there will be difficult times ahead, but good luck keep posting, a positive attitude like yours can help uplift other people in a similar situation.

I'm looking forward to a draught beer, fed up of bottles.

Dave

User

Posted 15 Feb 2021 at 15:46

Thanks Dave - Yes it is not great being on this flight path but I am where I am so lets try and enjoy the journey as best we can. And I totally agree a good pint of draught ale is far better that a bottled beer :-)

Nick

User

Posted 15 Feb 2021 at 19:34

Cheers!

Nick

User

Posted 18 Feb 2021 at 09:50

Well we are certainly having an “interesting” time with daily letters from the specialists and updates on results.

So the biopsy results are not good.... 14 of the 15 taken had cancer and were G4 or G5..... bugger. So my total score is 9.... double bugger..... the only time I score high in a test and I don’t want to !!!!! Weirdly my PSA in Dec 20 was 10.7 and in 2018 only 1.......

It is still only showing in my pubic bone and nothing in bladder. The CT scan last tonight was interesting as they where scanning my throat and pelvis but the contrast they used created a lovely warm glow all over..... even the nethers where glowing :-)

I have been on the Tamsulosin (?) since 5th Jan, the Bicalutamide for 21’ish days, the three month hormone jab last Wednesday and the only negative is the lead in the pencil.... labido...... sex drive...... the littler man does not want to stand to attention....... no hot flushes..... no pains and aches..... physically I feel great.

Then again then again the more people ask me “how do you feel” the more I start to wonder if I am missing anything and is that ache in the hip anything or the throb in my foot anything....... if only it was a throb somewhere else :-)

Anyway we have to smile as crying does nothing and a smile takes less energy. My wife is my rock and although it is hard for her to watch and be powerless at least we can hug and she can still moan at me :-) My daughters who are 21 and 23 where great when I told them. One has severe learning difficulties so a lot of things in life for her are very black and white but she lost her uncle to cancer a few years ago and her grandad two years ago. But she took it very well..... my eldest is very much like me..... brave on the outside and emotional whirlwind inside.... but she is doing ok and they have their mum - my ex-wife - who has been great.

So..... any tips are welcome..... any humour or beers are very welcome and if I can help YOU then let me know ..... I may not have the answer but I do have two very good ears .....

Be safe :-)

Edited by member 18 Feb 2021 at 12:29 | Reason: Spelling :-)

User

Posted 18 Feb 2021 at 11:47

Sorry to read your Gleason Score is a total of 9.

Your positive attitude is wonderful and writing style uplifting!

Thanks for update.

Ido4

User

Posted 18 Feb 2021 at 12:59

Well the postman’s been and another letter...... or two.

A lovely letter introducing my two new specialist nurses M and N and given it is a letter and not a proper face to face meeting it was nice to get....

And a letter with the date for my telephone Urology / Oncology consultation 10th March .......

Well at least we seem to be progressing along the journey with some degree of rapidity... just want to get my teeth into what the plan is..... how are we going to manage it..... I know it can’t be cured or cut out but what else can we do to give me as long as possible......

Guess we will have to wait and see ;-)

User

Posted 18 Feb 2021 at 22:44

Here is a post from about a year back. It is now a bit disjointed because some replies from "Andrew" have been deleted, but you will still see the general optimism from some of the contributors.

https://community.prostatecanceruk.org/posts/t23226-It-s-not-a-big-deal---is-it

So all I can say is keep enjoying life, no point in being miserable well not unless the beer runs out.

Dave

User

Posted 28 Feb 2021 at 15:55

Well, all is very much the same here. I have my first Urology / Oncology consultation over the phone on the 10th so until then I just take the tablets and try and get on with stuff.

Weird that I feel no different, since taking the Tamsulosin the waterworks are fine and back to the way they where when I was 18.... four more days of the hormone tablets and then I am off them as on the three monthly hormone jab.

I have signed up for the #MarchtheMonth and will be doing 11,000 steps and so far have raised £1.6k which is not bad in less than 48 hours.

Wishing you all well and remember when given Lemons we make lemonade .... not easy at times but a good dollop of humour always make things better...... :-). BE STRONG.

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