Extreme tiredness and special occasions

Good Morning Alison

Thank you for the good wishes on the other thread. Fatigue comes with the cancer treatment and it comes with both Hormone Therapy and with Radiotherapy.

We are all different and cope in different ways. The best way to do it is keeping as fit as possible and sleeping properly at nights. Many people take up swimming, join a gym, eating well and avoiding alcohol, coffee etc.

I am 69, still working (Self Employed Accountant) but I have plenty of interests so I am very active. On diagnosis I decided fatigue wasn't going to get me - I do eat reasonably well, i walk 8-10K steps every day and am not a gym member.

The first 18 months I was fine, didn't have any naps, didn't sleep on long car trips and if I did feel tired I took the dog for an extra walk. The latter 18 months nothing changes apart from I put on some weight. (This has just started to come off).

In short I keep active - I am always on the go - if I watch TV it's an hour and a half maximum and that's a football match. I am off out in an hour with one of my grand children, he's 5 but we are off for a walk, bus, train and tram ride - it keeps us both active (we might end up at grandad's pub! - but that recovery time!!).

My answer - keep going, keep yourself busy and fatigue can't catch you!!

Best wishes - Brian.

Morning Ally,I know how your hubby feels missing the afternoon nap is a nightmare I’ve only been on this journey a year and I rely on my naps so much Robert

Hello Ally

the birthday event sounds like so much fun for your grandson and his friends! Well done! It sounds as if the children are well settled with you.

re stopping the hormone therapy for a pause. I have heard of some men having intermittent therapy with a ‘ holiday’ . This actually puzzles me, though as we were told it can take a long while for the effects of the HT to wear off. 

I am also coming around to thinking that the cancer diagnosis and treatment shakes our husbands and us to the core and things will never be quite the same again. My husband ceased the HT in May when he literally reached rock bottom with his other illnesses kicking off big time. Age, these illnesses, PC treatment etc just seemed to overwhelm him. Since then he has somewhat ‘returned’ but often dozes on the settee, is much slower, has less physical stamina  etc….

i can’t advise re enzalutamide as we have not reached that stage in this journey but i would suggest you discuss this with his doctors. hopefully we will be experiencing more sunshine and warmer weather by April and, as a result, we will be emerging from the weariness of winter. Hopefully the family get together will give John the boost he needs and doesn’t tire him! It sounds a lovely plan for all so I hope you enjoy it.

We have a son living overseas  ( a long haul flight needed). The last time we visited was over 2 years ago and just before diagnosis but even then, the journey took its toll and we dont feel we can do it again. I so long to put my arms around my son!!!! I know you will be yearning for that first hug!! 

enjoy! 

I'm on HT and find naps (more than just an afternoon one) absolutely essential to survive the day. I plan any outing which is longer than a couple of hours to include a nap time, usually in the car if there isn't a bed/sofa available. I suggest you just include it in your planning so he can enjoy and fully participate in the day's festivities.

G

I had to speak firmly to myself last night as I thought he was just bored and showing it until I remembered what his poor body is going through. I guess it's positive that I had forgotten we are living with PC for a few moments! 

John is an Aussie and we now have our 2 daughters living in Brisbane - one plus husband and our other grandson there temporarily until next year but boy, do we miss them. The daughter getting married (on a beach to an American girl) is unsure about how long they will remain in Australia as it's so far from both their families. They have both got new jobs with lots of potential so although I would be ecstatic if they all returned to the UK I do get why Australia is a good place for them. The married daughter is on standby with work to come over though if things get tough for us caring for the grandsons if John needs chemo or perish the thought becomes very unwell - but for now we tell them we're OK and no need to panic. The boys' dad (our son) is local so here for us, just can't have the boys living with him for a variety of reasons.......aren't families complicated!!!!! 

Thank you for your understanding, I yearn for a hug from my daughters - my son is not a huggy person at all!

Good advice - thank you. We will be driving across the country to the party location so we might leave extra early and I'll disappear with the grandsons for the afternoon so John can have a nap at the hotel.

Napping was an enjoyable luxury once we retired but not so much fun now it's more than an optional extra! But could be worse as so far no hot flushes (we have taken up the welcome mat but expecting them to climb in through a window at some point!)

John has always been so fit and self disciplined about things so he's already stopped the obvious culprits like coffee and alcohol but has stopped riding his bike - promises it's partly the weather but mainly as anywhere he goes from our house requires a steep hill to return and he doubts if he could manage that now. We are getting a bike rack so we can drive somewhere flat, have a ride and then drive home. Luckily we both enjoy walking and with our OAP bus pass we can walk downhill and then bus it back for free!!!

Hello Alison. My husband is another one who has an afternoon nap and days are planned around this so that we can do more in the mornings and evenings. He was on Enzalutamide for 18 months and found that the fatigue did increase whilst he was on it but if it is too much to cope with then it might be possible to have a reduced dose. One good piece of advice we were given was not to push yourself too much when you are feeling good and to learn to pace activities.