It wasn't what I expected.

Good Morning Safeways 

Cracking, honest and to the point post. I know just where you are and your thinking

I an 6 years younger than you and prior to joining this "exclusive" club I would walk for miles with our dogs and was very active. 3 years on Hormone Therapy and 3 years older I am a changed person. I live in The Pennines, they are hills, I need somewhere flat, I am not fit, I have put on weight, I have brain fog and I do anything physical slowly - BUT - I am now 3 years older, I have completed HT, the weight is slowly going, the daily steps are improving and I feel bloody great.

Mrs Millibob thinks it's the combination of old age and HT (she's a retired nurse and also my wife so she's never wrong ). Would I do it again - go through 3 years of hell (read my profile) . For a "Curative Pathway", the answer is a big YES!

I nearly died - so for me every day with my wife, children and grandchildren is a bonus - I love life and it's getting better all the time - a positive attitude and working at it goes a long way, I have had bad weeks but I think I have got there. You will too - trust me.

Best wishes - Brian.

Hi Safeways , thanks for that honest post and your profile.  Firstly, keep remembering you are on a curative path and this is temporary while on meds.  I recently went on an additional HT and it knocked me sideways, luckily I have been able to switch treatment paths and am feeling better after just a few weeks.  I assume you probably don’t want to do much exercise but it is important to keep pushing.  I generally get up 3/4 times a night for a pee and sometimes just can’t sleep for hours, which is really debilitating but I have found a link between sleep and exercise, so generally I try and get out each day. Hope this helps, David.

Sleep as been terrible for me up five times last night ,bowel is non tolerant to any alcohol at mo finished RT Christmas eve. 

PSA results with zoom to oncologist on monday .hoping to get back on secondary HT  just zoladex 10 .8 at mo .

Havent struggled at all mentally or emotionally thank god .Just starting first year of proper retirement. Hope this year is better than the last one .

My missus watches some afternoon tv ,my god water aid ,cleft pallet  donkeys in distress rspca .I think I'm lucky after watching that lot and the guy selling some funeral plan ,I ain't seen anyone so eager to die and use his insurance in all my life.

Hi Safeways,

In many ways it's hardly surprising that you are struggling physically & mentally at the moment after all you have been through.  First with slipping on icy steps then the PC diagnosis followed by treatment for that whilst still currently on HT & the side effects that can have. 

As it stands, PC is generally something that men find they have when they are at an age when their body isn't as fit as it was when they were younger, so recovery from any illness or accident takes longer than before although our minds still think we should be up & about in no time.

Winter in itself can be a challenge with darker, colder & wetter days, but spring is on the way & the daylight hours are already lengthening.  Looking at how nature recovers will bring a natural lift in spirits and the opportunity to exercise more by getting out in the fresh air.

You will get there, keep a positive outlook, that smile on your face & find enjoyment in the small things in life.

Best Wishes

Brian

Hello Safeways,

I know exactly how you feel. In 2016 I was diagnosed with Prostate Cancer just 2 years after lung cancer which was treated by surgery (right lung removed) then chemotherapy. I had RT and HT for the PC which put me in the clear for 8 years.

Fortunately I'm still clear of lung cancer but my PC recurred earlier last year and is now incurable. I've had chemo for this and am now on HT plus Darolutamide indefinitely - or until it stops working. This has completely changed my life in a similar way to your's. I also don't feel like me any more and there is no prospect I can see of ever regaining the old me ever again. 

This has all been very hard to accept but I'm now recovering well from chemo, have been able to get reasonable cost travel insurance and am currently abroad for the rest of January enjoying warm sun, cold beers, exercise and good food. Life won't ever be the same for me and my better half but I do feel lucky to have been given the chance for more time to enjoy myself and my loved ones despite the new normal.

As you say tomorrow is another day, what happens is anyone's guess but despite doom and gloom life really is wonderful and to be enjoyed. I know you too will be able to enjoy it.

All the best,

Derek.

Thanks all for the positive thinking and advice, prior to being diagnosed last April a very fit 75yo, 76 in August and have been all my life very fit, cycling, hill running, rock and ice climbing, motorcycling, just general fit all of my life, worked in a variety of jobs some very physically demanding and twice in the army!

Falling down the icy steps was a bit silly but these things happen.

I was told that "you'll be fine, or you'll be okay'  but there was hints that the treatment might affect me afterwards but nothing like it has done, I went out to get a 20kg bag for our greedy garden birds, I could not move it, I had to get my son pick it up and bring it  up to the house, losing my fitness has been the hardest thing to come to terms with. The muscle loss has been quite alarming and my wonky neck is even more of a problem, my joints clonk even more, does hormone therapy really thin our bones?

I have an appointment with my GP, in two weeks time and then a the meeting with my online consultant the day after  and hope that they can both help sort some of my problems out.

I have found that keeping myself moving, walking the dogs,  but falling asleep in the supermarket cafe while the wife was shopping was really out of order.

I hope, dearly hope, that I will see some improvement especially as the year goes on, time will tell.

So today I get the news from doctor that my first PSA test after finishing Radiotherapy at the start of December, has dropped from 6.1 to 5.

I'm also on hormone therapy with another 16 months to go on it.

As far as how I am coping, I'm doing okay, still have the mood swings, depression and falling asleep randomly, my wife is copping with the changes she has seen in me since I started on my treatment and has huge shoulders for me to cry on, and I do cry.

Our dogs continue to drag me around the village that is helping, seems in our small village you can't keep a secret, they knew that I was getting married before I did, or so its seemed at the time and they all know I have been treated for PC.

I have a 'near me ' meeting next week with my consultant which, I hope, will be interesting.

What has worried more than anything is I cannot now lift anything more than 10kg, a visit to our local pet shop for some seed for our greedy wild birds saw me drop a 20kg bag of seed, only for the elderly lady, nearly the same age myself, pick it up and take it out to the car.

Things are improving, drinking, less very weak decaf tea or coffee, has seen my nocturnal wanderings down to two or three times a night.

My doctor gave me some sleeping pills to help me sleep at night and they worked but I still woke for the loo and woke my wife up when I bump into the wardrobe or stumbled down the stairs, so until I speak to my GP again I have stopped taking them, my wife didn't find it amusing but in some weird way I did then I remembered that failing down steps and a visit to my GP was what set me on this road that has changed my life, should I say for ever?

I'm looking forward to the spring, my motorcycle is sitting shining waiting for me as well, here's hoping the wait won't be in vain.

More to be going on with, my nightime wanderings to the loo have all but ceased which is good news especially so because I am sleeping longer.

I am now  suffering from extreme, at times, fatigue and lethargy, falling asleep in seconds. 

I have tried to be as active as possible but I become overwhelmed with tiredness after walking our dogs or working in the garden, I lifted one dog which made me suddenly very weak and sleepy.

Is this normal after 3 months radiotherapy and 9 months on hormone therapy and if it is how long can it go on for, I've another 15 months on hormone therapy.

I have had blood tests all of which have come back 'fine' according to GP.

Otherwise I am fine

Hi Safeways ,

I am sorry to read your story - you are having a trial.

My own treatment is 2 more years of HT, finishing radiotherapy tomorrow.

I have fatigue, but not like yours. A pre-existing back problem has also arisen again, making it very difficult for me to walk right now.

Your position reminds me of my daughter. She suffers from Chronic Fatigue Syndrome, a condition that is often misunderstood. It's symptoms are very much like yours in the fatigue department.

Her advice to me was to watch what your body does, and see how much energy and strength you have.

Plan your time to expend your energy in the most positive way you can. She describes her energy as spoons. When you start the day you have a limited number of spoons. You know that, for example, taking a shower will cost you a couple of spoons, going for a walk five, and so on.

Once you have worked out your actual energy levels, you develop a plan for your day that you can live with.

In my daughter's case that is doing whatever she needs to in the morning, and then going back to bed for a couple of hours in the afternoon, so that she can spend part of the evening with her husband and children.

Once you have a plan together, try it out. When it works, stick with it for a while until a balance is achieved. Only then can you begin, deliberately, to rebuild.

Obviously my daughter does not have prostate cancer, but she has taught me, from time to time, to do what my body wants, rather than what I think it should.

Recovering strength is going to be a mission, both for you and me. It will take time, and may not ever get back to what it was. I am going to give it a go though.

In the meantime, I will be trying to fix the back problem.

Best wishes

This is a common side effect of Hormone Therapy.  I too could fall asleep at the drop of a hat whilst on it - If I sat down I fell asleep.  Keep exercising - I continued to go to the gym 3 or 4 times a week all through my treatment as the HT causes muscle wastage and as we get older we cannot get that muscle back and age itself causes even more muscle wastage.  I was 75/76 when diagnosed and going through treatment too.  Now I am 81 and continue to do all the things I always did but now because of age fall asleep just as easily as I did whilst on HT - apart from in bed - my wife wakes me up if I sit down to watch TV and fall asleep during the day in the hopes that I will be able to sleep at night.  Once the HT is finished it will take about a year or so for these side effects to disappear but they will disappear eventually.  Take care and keep going.