I am a reluctant newby here

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Posted 19 Jan 2019 at 11:05

Thank you Merivale and Irun! Your posts are really inspiring.

My husband had his results on Thursday 17/1/18 - PSA 90.5, Gleason 9, spread to bones -pelvis and clavicle, spread to lymph nodes. Not what we wanted to hear! Obviously we are still getting over the shock and having some very dark times but we are also managing to have moments of 'normality'. We have wonderful family and friends and we are all in this together.

I have read some of your posts/profiles to my husband and we have looked at your website Irun. He is starting to get the message that life can go on, so thank you!

He is 58, a retired PE teacher and has always kept himself fit. He played football and he still coaches volleyball. He has always been a runner and he is now inspired to carry this on and can see the great benefit of it both physically and mentally.

The hospital phoned on Friday (the day after his results) and he is seeing an Oncologist at 9am on Monday morning. They certainly dont waste any time! He has been on hormone tablets since 17th December when he first saw the urologist. On Thursday they gave him his first hormone injection. I'm not sure if anybody can give us some idea about what may happen next. Is he likely to be given radiotherapy/chemotherapy anytime soon or just left on hormone therapy? Would you say that he is classed as advanced and t3 or t4? We couldnt take it all in the other day as much as we tried.

User

Posted 19 Jan 2019 at 12:17

Great post Kev, as always. Very uplifting despite the hell that is PC. I hope your Arctic trek goes well.

Ian

Ido4

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Posted 19 Jan 2019 at 14:51

Hi Deblc
If you post your husbands details and questions on your own post you will get a lot of information and help from other members.it may get lost on someone else’s post .its usually pretty quiet at the weekend but others will get back to you .
Sorry you find yourself and hubby in this position but as you can see from iruns post and mine there is hope that a relatively normal life can continue .
Best wishes
Debby

User

Posted 19 Jan 2019 at 15:55

Thank you Debby, will do.

User

Posted 19 Jan 2019 at 15:58

Hi Kev,

Great idea to post your original thread. You have done so much to inspire others, including me ar

Thanks

Take care

Steve

User

Posted 20 Jan 2019 at 12:06

As you know Kev, I follow you closely through your FB posts on your running and will say here what I say to you there.

Hackneyed word these days as it is used for silly little things sometimes but Inspiration is what you are to me and to many others.

Keep up the good work young man!!!!

We can't control the winds - but we can adjust our sails

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Posted 16 Apr 2019 at 07:57

So here I am again hoping to give hope for some having read such sad news on the site this morning so my apologies if I unintentionally offend anyone.

Last night I returned from having completed the Marathon Des Sables 250k foot race across the Sahara for the 4th time in 4 years all since I was diagnosed with T4 prostate cancer. I realise from my years reading most posts on this site that I am lucky for so many reasons but also want others on the pca rollercoaster to see that the way ahead is not always only sadness and fear but if you want something enough and circumstances allow you still can achieve so much.

I wanted to run this race since I was 20 and read of the first ever one. It took 30 years and (sadly) pca for me to achieve that dream and now it’s x4 ( I also believe I am the only person to have done the race 4 times with any T4 cancer).

If you are reading this with despair of life perhaps think about what you too may be able to achieve despite being where you are and make the most of today and every day you can.

You can if you wish see what I have been lucky enough to achieve in the last 4 years on my site www.makethemostofit.org together with my personal hopes for the next adventure.

I have my monthly blood test next week but then, I am off walking the 500 mile Camino De Santiago with my brother in memory of my late father who also had pca, it’s another impossible dream that may now become possible for me. Thanks for reading, never give up, Kev

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User

Posted 16 Apr 2019 at 11:55

Keep it up Kev. As you said previously plan something for everyday or the dark voices take control.

I feel a bit inadequate running a mere 5k Tough Mudder but hoping it will inspire me to do the full 10 mile ones. Reading of your exploits does give me strength to carry on and do more.

A little like yourself it was the PCa which shook me up and made me take a look at my life.

We mustn't let this disease take control.

Thank you

Phil

User

Posted 16 Apr 2019 at 16:21

I love watching your achievements on social media - what a star you are. Dad did most of the Camino last year and although he doesn’t have the extensive mets you have and probably took longer, he is about 30 years older so we were very proud of him. He is going back in June to do the stretch that he missed last time!

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 16 Apr 2019 at 16:45

So envious Kev— I’m on industrial strength painkillers for my knees at the age of 51 and struggle to do my 15 hrs a week caretaking. I actually can’t even jog anymore nor kneel down :-((
I have worked my ass off for 30 yrs though. Good for you and enjoy every minute. I’m doing the same but in other ways lol

User

Posted 16 Apr 2019 at 17:18

Originally Posted by: Online Community Member

Chris I assume you have had the bad knees for ages and they are not related to your PC?

I ask because I am really struggling with hip pain at the moment and despite having had it looked at twice and being told it's arthritis it seems to get worse to the point it now disturbs my sleep if I lie on wrong....

User

Posted 16 Apr 2019 at 17:37

I’m nearly 4 yrs post op and this has been last 2 yrs. Had X rays etc and they checked the PET scans also. Just said it’s Osteo Arthritis but sadly my 9 yr old boy said I look like an old man walking yesterday. As Lyn says , I’ve been on daily Cialis for 3 yrs but I’m immensely enjoying the ‘up’ side to that way too much to stop ;-)).
I feel it may be cancer related — even lymphatic fluid pressing on nerves etc , but who knows ?? But I’m a proper grafter and I ain’t giving up easily although in proper daily pain. Just built a new Ikea double bed with draws and kitchen table and chairs etc. I feel like I’ve been in a car crash so can’t wait to get in lol

User

Posted 21 Apr 2019 at 08:45

I was sent this link from a lady I know in NZ who I ran the marathon des Sables with in 2018 and now has breast cancer.

there are many links to pca in the text and video so it’s worth a read/watch. Whilst I still run big distances it indicates that exercise in general is good to fight cancer ( under supervision if you are new to it or are upping what you do)

i went for a run the day after my first chemo, this video indicates I could have done something straight after chemo on the same day! If nothing else if you are starting chemo don’t be sedentary if you have the ability to do something.

get out and enjoy the sunshine today if you can

kev https://fitness.mercola.com/sites/fitness/archive/2017/03/24/exercise-benefits-for-cancer.aspx

https://fitness.mercola.com/sites/fitness/archive/2017/03/24/exercise-benefits-for-cancer.aspx

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User

Posted 22 Apr 2019 at 00:08

I’ve read quite a lot about the benefits of exercise. But I have stopped running as my knee can’t take it anymore so I do High intensity interval training. However I draw the line at weight training as I have also read that this increases testosterone which may be ok for a normal bloke but not so good if you have PCa.

Bri

User

Posted 22 Apr 2019 at 12:00

Resistance training is good for bone density. I think “gym bro” levels of lifting with supplements and whatnot will have a significant effect on T but mid range weights and reps won’t have that much of an impact especially for us older gentlemen 😀

User

Posted 22 Apr 2019 at 12:55

I clearly am no doctor but if there is any truth in the video /papers it appears that even moderate exercise has some positive effect. May be hogwash of course however I think most would agree even forgetting cancer a less sedentary lifestyle is probably good for most.

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User

Posted 22 Apr 2019 at 20:19

Agreed.

Heart healthy yada yada.

So I need to put aside the four days of post bereavement drinking I have just done and pull my finger out.

I have two stone to lose and at least 10 beats per minute on Fitbit!!

User

Posted 12 Oct 2019 at 14:40

Following another month of friends passing I wanted to again inspire (I flatter myself) others to make the most of life as every day is a gift.

i am writing this on a bus following finishing a 250k (150mile) race across the desert in Jordan .

I am 54 , diagnosed T4n1m1a nearly 5 years ago , have had chemo, RT, been on abi for over 3 years and still run further than I did before I was diagnosed . For what it’s worth I came 29th out of 73 runners , most were much younger and fitter than me .

So if you have been newly diagnosed and think that life is over maybe think again , most cancers dont like oxygen so do whatever you can do to keep that blood flowing fast even if ultra running is not your thing .

On day 3 of my race on a non stop 43 mile section in soft sand and 42c it was thinking of our departed brother Si that kept me going as he always said I was mad and I aim to stay as close to being a hatter as I can manage for as long as I can just to prove the great man right .

Remember , yesterday is history, tomorrow is a mystery but today is the present and you should never waste a gift ! I for one intend to die living . Carpe diem.

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User

Posted 12 Oct 2019 at 16:56

Dear irun,

Reading your post and history has really helped me. I have only recently posted on the forum about the shock and worry following my husbands diagnosis which is similar to yours (T3aM1N1, PSA 287 and Gleason 8).

He was diagnosed in July and I still feel very much as you describe in your first posts. So, thank you for your update and advice which I am sure will help others feel more positive, it has certainly uplifted me today.

Mrs MAS

Edited by member 15 Oct 2019 at 14:12 | Reason: Spelling

Mrs MAS

User

Posted 12 Oct 2019 at 17:21

I agree wholeheartedly Irun. Carpe Diem

Ido4

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