Husband age 54 stage 4

Edited by member 20 Mar 2017 at 13:29  | Reason: Not specified

This is going to get very confusing with one member called The Wife and another called Thewife posting messages to each other!

Take care and very best wishes.

Thank you Mountain Stream. Likewise, my husband doesn't "do" poorly, usually just moans a bit and then goes to work anyway! I don't think he's taken a sick day for years. He's not a very patient person so we've had a few angry words regarding the fortnight wait for the next appointment. In the meantime he has decided to redecorate our daughters bedroom and the stairs, cue lots of mess and plaster falling off the walls. We've had a pep talk with one another around trying not to let "waiting" consume us, that in itself is exhausting. So gritty carpets it is and eau de gloss.

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?

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

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 22:29  | Reason: Not specified

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 19:45  | Reason: Not specified

"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?

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.

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

We've had a chat today and we are going to arrange a meeting with hr to find out his options. He's not a member of the union now but he has been, I can call them if we're not happy with what's offered. Hopefully as they've been really good to him they'll continue to do this. We won't know until we ask!

It's all semantics when it comes to life insurance, critical illness is not necessarily terminal. We have terminal, the definition of which in our policies is "less than twelve months to live".

We'll have to wait and see if the insurance agree with the consultant but it's only a few weeks.

Regardless of whether the insurance pays out OH has been signed off again, the pain being too much to cope with.

We have had a meeting with the Pain management clinic and they have suggested OH stop codeine and try oral morphine and paracetamol instead.

Pain is reduced from not working anyway but still making it hard to keep mobile.

A good discussion and a holistic view of OH, looking at what could be causing pain and how to manage it.

Peripheral neuropathy, general wear and tear in the lower spine inflamed by the hormone therapy, and the pelvic metastases make it difficult to pin point.

OH has taken 3 doses over the last 24hr of 2.5ml of oramorph and 2 paracetamol. Already he feels that the pain isn't quite so bad. If that's all he needs then this is brilliant and we might even manage a walk to the pub to watch the footie!

On the downside his bowels seem to be all in a jumble, frequent trips to the loo and feeling a bit sick.

We saw the continence team yesterday to discuss bowel issues/constipation/urinary leakage and the nurse thought it was probably the morphine and hopefully this will wear off as he gets used to it.

Anyone else on oramorph got any suggestions?