Update from a tired wife

Hi Linda. i wish you both all the best with your treatment, apart from being 2 years older than your husband our treatment is very similar if i could just give two bits of advice try to keep as fit as you can because, as you probably know HT + RT really sap your strength and do not lose your sense of humour. I too am more emotional than i have ever been but i just used to start crying for the slightest of reasons at the worst possible times, "thankfully" the instances are very few now but if i am being honest with myself i think they did my good. all the very best and take care.

Hi Eddiel, I read your story you sure have been through the wringer!  You are so right about many things, the fatigue has got him  down at times but he makes a conscious effort to try and push through it and manages well until early evening then he just has to go to bed.  He too has been so emotional he can be in tears for the slightest reason and gets annoyed about it but some days are worse than others, one thing that doesn’t help is that he is still up about four times a night for a pee, which I think plays havoc with his emotions due to broken sleep continuously.  He has managed to work full time throughout but he is going to take a month off work for the radiotherapy as it’s at 11 am each day and he has an hours drive to get there so it will be easier if he’s not working.  His last session is 22nd December and he’s already worrying he will ruin everyone’s Christmas by feeling too unwell and tired by then to enjoy it.  That’s another thing I’ve found, he was always very laid back before but since HT has become a serial worrier, worrying about everything and everyone.  That alone must be draining.  Did you feel even more fatigued or unwell following radiotherapy?  I wish you all the best and hope you go from strength to strength.

Hugs

Linda

Hi Linda

He's doing great - fatigue gets us all at some point but exercise and exercise and he will be fine.

I found the "sunbed" to be quite relaxing and by the time fraction 20 came round I would be missing some of my new found mates. I got through RT with just a few "niggles" with my number 1's and 2's but nothing to disturb me and 10 months on I feel great.

I still have a couple of "wanders" at night for a pee but go right back to sleep. Everything is good with me now and yes I can cry for England too! It's "gets" me sometimes over little things (I haven't adopted a Pangolin yet!!) but don't take me near a homeless dogs shelter!!

He's lucky with only 10 days on the old enema - I had the full 20 plus a "practice" for the planning scan - but I am proud of my 3 tattoos (Thanks NHS!!).

I hope all goes well with the RT - keep us posted - he will be great with it.

Best wishes - Brian.

Hi Linda, 

Great to hear your update. It sounds like you are pushing forwards well with the treatment. My partner began to feel very tired and unwell half way through the RT and that carried on for roughly two weeks after, he was exhausted. I think as well as the after effects of the RT he was dealing with the emotional side of getting through to the end of the treatment. I think the last RT session was something we had both focused on for some time as the end point. So for you finishing at Christmas could be a good thing, as he can rest easily and enjoy family and friends with the added bonus of yummy food and the usual terrible things on TV. By mid January he should start to feel a lot better and also look forward to a more settled New Year.  Hope it goes well for you and enjoy your pangolin 

L

Thankyou for writing this, there are many similarities with my husband's situation, he began his radiotherapy this week. I find the emotions hard to deal with, he cries if people are kind or if I'm being 'too nice' (?) and sometimes he doesn't know why he's crying. We're a year on from diagnosis, no cure as already spread to bones then, but enzalutamide/prostap/calcium iv have got him this far. Good luck to you both, and be thankful you can retain a sense of humour. Take good care of each other xx

 LinP 

Hi Linda,

It's great to hear that your a both coping well with the treatment and what a lucky Pangolin. Please be aware that Cyproterone can play havoc with blood sugar and may push your OH into Type 2 diabetes. Many health professionals aren't aware of this so you should try to control the intake of sugar and ask for an HbA1C blood test if possible.

Hello Linda, BarryW, spirit in the sky and all you other brilliant wives and partners who are supporting your husband's and loved ones through this journey. I must admit that I have not had a decent night's sleep since my husband's diagnosis over three years ago and yes I do get exhausted at times as it has been quite a tough journey seeing him through the ups and downs of fluctuating PSA's, radiotherapy, chemotherapy, hormone therapy and enzalutamide. I then look at him with his Dopey/Happy expression and a Mohican hairstyle thanks to chemo and realise how lucky I am still to have him around. We both have a wacky sense of humour which has really helped, as you have probably gathered from the tone of some of my posts. Just keep on posting no matter what the subject as we all find it reassuring that others are going through the same thing.

Hi Linda after my RT + HT i had about 3 to 4 weeks where i felt normal "my normal", my peeing was ok and thankfully my bowel movements were great, just felt weird for a time, but the treatment caught up with me almost overnight, luckily  i had retired 4 years earlier so could get my energy levels back up in my own time with the help of a friend who does cancer rehab. as for sleeping i can get up 2 to 8 times a night and at times it gets to much. physically now i am ok but Linda how i would love a good nights sleep. i am starting a relaxation and a managing fatigue workshop next week and with my new meds, which are helping,"solifenacin", i am for the first time in 18 months hopeful. As for the crying i do it too but i am certain it helps. take care Linda and all the best to you and your partner.

Hi Linda, it’s great to hear how you are both progressing along this ( sometimes tortuous) journey. I have repeatedly said that my husband aged 10 years in the first 3 months of HT!  The micro enema totally freaked him out - to such an extent that he said he was withdrawing from all treatment - which was ‘with the intention to cure’. We had some angry words at the time!  As for tears ! Well, can HT be transmitted to us wives?!!!! I cried for England all the way through the first 8 months or so!  

so, a year on - where are we at?  The HT is to continue for another 6 months. The RT took its toll on both of us ! For me it was the driving daily to the hospital across country roads and inner city traffic. My husband got very tired - so much so that I was fearing that his brain fog was the start of dementia! About 4-5 months after finishing the RT I noticed that he was a bit more energetic and was beginning to think a bit more clearly. The prostate nurse said that it can take some months to ‘heal’ after the RT.

I think the last year ( exactly a year tomorrow since he started HT) has taught us both a lot! We no longer assume it is our right to live in perfect health for ever! It has made us aware of our own mortality! However, this is no bad thing! We no longer take each other for granted! I think we’ve drawn much much closer than at any point in our 50 years of marriage! We are ‘putting our house in order’ ie making Power of Attorney, giving our kids lists of our finances etc etc. we are enjoying ourselves ( spending the kids inheritance!) and  just taking each day as it comes

he still gets ‘down’ times but he tells me when this happens and I try to both empathise but also suggest going out somewhere, anywhere, if only for a brisk walk! We are muddling through as best we can. We are very concerned that his PSA might rise once he stops the HT on the one hand, on the other we are both counting down to the end of HT.

oh, and the tears did eventually stop!

I wish you and your husband all the very best on your own journey and hope everything goes well with his pangolin investment! X

Once again WW you express things so well, have you started the book yet? Like you we have been getting our house in order with wills and finance. This wake up call has even prompted good friends of ours to get married after 35 years of living together -AHH.