Husband age 54 stage 4

User

Posted 12 Mar 2018 at 00:40

It's been a long year. I didn't feel like cataloging the journey, like many others here; we have been trying to get on with life regardless of pca.

Oh ended up being off work for 8 months, his fatigue was and still is dreadful. He had 6 cycles of docetaxel july-Oct and started a phased return to work in January. He still hasn't managed a full week and is on light duties. Latest oncology review 19/2/18 gave psa as 0.8 which is good. All other bloods were within "normal ranges" but iron was a bit low at 125.

We've upped the dark chocolate and red wine to combat this😃

Next appointment is in May. Oh is struggling to get through a day without napping, anyone have any advice on being able to improve this?

User

Posted 12 Mar 2018 at 07:17

Hi Kentish, PCUK ran a programme a couple of years ago on fatigue and a few members were involved. It did seem to help so probably worth you giving the nurses a call on the number at the top of the website page.

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

User

Posted 15 Mar 2018 at 20:03

Hi Kentish

My hubby did the fatigue work with the PCUK teams and it did help him a lot at the time, it’s all about pacing and recording when you are tired and need a nap. I’ve found my hubby needs a nap most days and has done since diagnosis, the fatigue affects some much more then others, it’s a horrible side affect that many people can’t begin to understand. Definitely give the nurses a ring and see if they will put him on the programme, you never know, it might help.

Good luck

Devonmaid

User

Posted 15 Mar 2018 at 20:41

Kentish

I'm a bit younger than your OH. I've been on hormone therapy for three weeks and I'm exhausted. At first, I thought it was all in my head. But it must be the medication because I am wiped out. I find this odd as I thought I'd breeze through the HT. I'm phoning the PCUK nurses for a bit of guidance.

Ulsterman

User

Posted 14 May 2018 at 19:41

Update: Reviewed May 11th, PSA 3.

Not really what OH wanted, when you know that there are only 2 outcomes for each appointment 1) Same 2) worse, you really hope for option 1.

OH very fatigued, has managed a fortnight at work full time but is suffering from the effort, increased pain and a brain fog that's hard to shift.

He naps when he gets in so he can spend the evening with us.

Waiting for an appointment for a bone scan, Oncology thinks it's worth a look to see if there are any new mets.

Prescribed Bicalutimide to add to the 3 monthly Zoladex to see if that reduces psa.

We were really hoping that Zoladex would have lasted longer before seeing a rise.

What can I expect for OH with the added Bicalutimide?

What have others done next?

Thank you in advance.xx

User

Posted 14 May 2018 at 20:00

Really sorry to see that - did they do a testosterone test?

Possibly they will keep him on bicalutimide and Zoladex until the PSA starts to rise again and then introduce either abiraterone or enzalutimide - and / or possibly another go at chemo.

Is he still on full sick pay or has he been dropped to half pay or SSP now? If your income is dropping, it might be the right time to see a Macmillan adviser and start looking into ill-health retirement.

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

User

Posted 14 May 2018 at 21:24

Thanks for the reply Lynn. I don't know about testosterone, I haven't asked. My OH doesn't read the literature and finds it hard to understand if he tries, he's very dyslexic. I have found that if I mention anything to do with treatments he gets fixated on it and angry with me if he doesn't really understand. I would ask endless questions if it were just me in the room with the onco but I feel bad asking in front of OH as more information seems to overwhelm him. What do I need to find out about testosterone?

Sick pay stopped back in October but his employers have been very good to him and continued to pay full pay. I can't fault how lovely they have been to him. It does mean we don't qualify for means tested benefits though. I have been in touch with my local benefits lady at macmilan, not much they can do at the moment.

Edited by member 14 May 2018 at 21:29 | Reason: Not specified

User

Posted 14 May 2018 at 22:21

Perhaps just tell him that the hormone treatment is to stop testosterone and it would be really useful to know that it is working. If he is agreeable you could then call the urology nurse (or ask at the GP practice) whether testosterone levels have been measured when the PSA test is done?

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

User

Posted 16 May 2018 at 18:42

Update, Appointment for bone scan in today's post. 25/05. At the review on Friday Onco said it was about time to do another bone scan, last one was done at diagnosis Feb 17, to have a look but that it was not urgent. This feels a little urgent! We were expecting from that conversation the date to be next month or nearer the next review in 3 months time. As a result of the letter I contacted the specialist team to ask about whether the results of the scan will be sent to us or if we had to wait until the next appointment to go through them. OH was very distressed at how quickly the appointment has arrived and that he wouldn't know whether there was any change or not for 3 months. I relayed this to the nurse and they have booked in OH the Friday following the scan to go through the results. A question they asked me was "how will you feel if it is not a good result but there isn't anything we can do about it?"
I can't explain how "not knowing" is in itself exhausting, for OH and me.
I've posted not to complain, but just to air my frustration, and anger at a cancer that is nibbling away at OH. If I put it here then I won't take it out on people who don't deserve it, family, nurse etc.
Thank you for listening, grrr

Ps. Lynn, testosterone had not been measured in any test so far. Nurse didn't seem to think it was important or necessary to do, and that it won't change the general outcome of Nigels treatment plan.

Edited by member 16 May 2018 at 18:45 | Reason: Not specified

User

Posted 16 May 2018 at 20:44

Originally Posted by: Online Community Member

I can't explain how "not knowing" is in itself exhausting, for OH and me..

I think every one of us here can sympathise completely with that viewpoint, Kentish. Not knowing is, in many ways, worse than knowing even bad news, because your life is just completely on hold while you wait. I hope the bone scan results are favourable.

Chris

User

Posted 20 May 2018 at 17:54

I would recommend trying acupuncture. It’s helps me loads with the fatigue and hot flushes. Our local Neil Cliffe Centre offered it as did The Christie where I’m being looked after

User

Posted 20 May 2018 at 17:56

I describe it as my old life ending the day I was diagnosed, 9th May 2017 and a new life starting. I don’t like the new life but it’s better than the alternative!

User

Posted 20 May 2018 at 18:38

"Ps. Lynn, testosterone had not been measured in any test so far. Nurse didn't seem to think it was important or necessary to do, and that it won't change the general outcome of Nigels treatment plan"

If it were me, I would want to ask the onco about that at the next opportunity. Personally, I disagree with the nurse for the following reasons:

- if the PSA rises and the testosterone is not at castrate level or below that tells you that the hormone isn't working as well as it should.
- if the PSA rises and the T is below castrate level, that tells you that the cancer has learned to survive without testosterone (this is commonly called being 'hormone resistant' 'castrate resistant' or 'androgen independent'

If a) applies, they add bicalutimide and / or change the hormone or give it more frequently. If b) applies, it is necessary to introduce a new treatment or look for trials.

Was it the oncology / urology nurse specialist or the one at your GP surgery?

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

User

Posted 07 Jun 2018 at 22:46

Thanks Lynn,

It was the urology nurse. Results of the bone scan "no significant changes and no new mets" I said "Good, well that's good isn't it?" And the onco just looked at me, no nod of agreement or anything. He's a very nice chap but I find it really hard to read his expression, I'm sure he's very good at poker!

We discussed Oh fatigue and general well being and onco suggested considering early retirement if it's possible, as work is more effort than necessary.

We also discussed life insurance and terminal illness cover, I hadn't really prepared to have this conversation just yet but who does?

Onco thinks OH will qualify for terminal.

A depressing meeting all round really, OH needs a few days to mull over what he wants to do but all the decisions are tough ones.

Onco did say that it's likely that OH will have another change in his treatment plan within the year, I've looked him up and his specialism is pca so I'm going to assume he will be offering OH the best he can get within our NHS Trust.

Regarding trials, this was discussed early on and onco felt there wasn't a suitable trial for OH at the moment but I will ask in the next review.

User

Posted 07 Jun 2018 at 22:58

I am so sorry Kentish, this was not what you hoped for. On the other hand, if you can get an enhancement then perhaps ill health retirement would be a blessing - we made the decision 2 months ago that John should pack in work and honestly, he is like a different man. It is as if a weight has been lifted.

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

User

Posted 07 Jun 2018 at 23:06

I think it would be Lynn. It definitely feels like he's slogoing away because he thinks he should.

If we don't get the enhancement then he will be signed off sick again with a view to not returning. He'll need to talk to his hr dept to get an idea of what Ill health retirement entails.

Like I said, all the decisions are really tough, sometimes I don't know where to start.

User

Posted 08 Jun 2018 at 00:41

If not already done so, consider speaking to Macmillan nurses or your local hospice - both usually have some kind of befriender / adviser who can help you make sense of financial matters. Also, Macmillan do a leaflet about cancer & money.

Does he have any employer pension pots? One of the things I didn't realise was that the pension companies can make better offers when they realise that they will not be paying the pension for 30 years.

John didn't get any kind of enhancement or even early retirement; I estimated that he would be off work on full pay for 4 months and they just agreed to give him the 4 months salary as a lump sum.

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

User

Posted 08 Jun 2018 at 06:02

Hi Lynn,

I have spoken to Macmilan adviser, they suggested OH be signed off again and that he start the early retirement conversation with his HR dept. Being honest, I think he is afraid to do this, he's only been there 10 years so the pension is negligible, we would be walking away with very little.

What do you mean by the 4 months?

Thank you for taking the time to chat.

User

Posted 08 Jun 2018 at 08:18

If you have a union representative they would be good to talk to too. Just be careful the company doesn't encourage you to take the "cheap" (for them) option.

If in doubt stay on the sick rather than resigning / retiring.

User

Posted 08 Jun 2018 at 08:25

Varies from company to company but at John's place they pay sickness at 6 months full pay, 3 months half pay then it drops to just statutory sick pay. He had already been off for two months so had 4 months left - he just spoke to the head of HE and said 'if I go now rather than you having to pay me for months, would there be any deal?' They said 'no retirement or redundancy deal but we will give you the 4 months full pay up front if you want to go now'

For us it was a no brainer but a) he trusted the HR director implicitly b) he is not terminally ill and c) we knew it would be better for the company (and John's staff) to be able to draw a line and recruit someone in his place.

You need proper advice - is he in a union?

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

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