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Ignorant wife

User
Posted 16 Oct 2020 at 21:06

Looking back over the years, the jerky urine flow heard at night was a clue. But, an older husband who avoided medical establishments, did nothing. Nothing, until he found he could not urinate, was in pain and a trip to A and E in 2016 had him catheterised.

This was the beginning of a journey where, about twice a year we visited a prostate clinic to measure flow rates, PSA levels and sometimes a physical examination monitoring his condition. With his poor mobility due to arthritic joints and cataracts I always took him to these appointments but he never wanted me to go into the consultation with him--nor it seemed did other partners from the waiting room. He always reported back that the team were divided over his prognosis about whether he had cancer or not. He told me medication (biculutamide) was given to just reduce an enlarged prostate.

Was he protecting me?

A major scare later in 2018, when he was hospitalised with a urinary infection which they were worried was going to damage his kidneys and which made him pass a little urine every 15 minutes added more meds (tamsulosin) to reduce the frequency of urination.

He continued to make light of his health--he was in his 80s after all--and so with Covid this year rearing its ghastly pall over life he was not surprised when he had not been recalled for his review and a year had elapsed since he had been checked.

Severe pains in back/neck and head made me insist he phone the GP. Then taking many precautions because of the Covid virus we were sent for a blood test in June this year which came back with a great rise from 13 up to 70s in his PSA. GP told us to ring the prostate clinic at the hospital and although the receptionist told us that doctors were working from home and not available, I insisted and she did say she would pass on the message. This luckily prompted a new prostate consultant from our clinic to ring us on 16th June to tell us that his prostate cancer (stunned silence from me!) could have moved into his bones now. He arranged an implant supplement would be posted to us, for us to organise administration at our GP. This was achieved 22nd June and a bone scan arranged by the consultant was done on 23rd June. I was able to join in this conversation only because I quickly put the phone on loudspeaker.

We waited for the results of the scan and then by checking with the GP she checked the notes and said it looked as if cancer was in his bones but we would need to wait to hear from the consultant. They were unable to give me any more information or guidance than this. Feeling anxious I asked for more clarity at the GP surgery again 6th July, a very involved call back arrangement which means you are waiting all day. Once again I was told to ask all my questions at the appointment at the Prostate Clinic. Eventually a letter did arrive, giving us an appointment 1st September---my mind whirled. Did this mean the situation was not dire or was it delayed because of Covid? Two months is a long time though to be waiting when you have no idea how long he may have left.

This began the most stressful time of my life.

The day before the appointment it was changed to a phone call as the doctor was still working from home. The long awaited September call was a disaster as I was not involved at all. My deaf husband could not/would not put it on loudspeaker and kept the earpiece close to his ear. He didnt ask about his bones at all! But he cheerily told me his PSA was going in the right direction and was in the 40s now.

And then another hospital letter arrives telling us of a change to an unknown (to us) appointment from a face to face to now a phone call. The appointment was to be 1st March 2021!

Luckily we had not been forgotten and a bone MRI was booked for 11th September. Feeling so in limbo I wrote directly and secretly to the consultant to express how scared and upset I felt with so little direct communication and just wanted him to know how this affects family.

A copy of a letter to the GP arrived 30th September giving the result of his bone MRI.

"Bony metastases in multiple thoracic vertebras and the first lumbar vertebra but no spinal cord compression or central canal stenosis. No nerve impingement. He is on maximum androgen blockade so no further management at present."

In response to my letter to the consultant, also on 30th September he rang me to explain my husband's case was discussed with an oncologist and that we should receive an appointment with them soon. He could not be more precise as I did not hold a Health Power of Attorney for my husband and at his age any number of things could cause his passing.

7th October we receive the letter with an actual face to face appointment with the oncologist booked for 13th October. I was determined to ask my list of pressing questions.

My husband was feeling ready to give up when our 3.30 appointment had us waiting until just gone 5pm. My husband meekly downplayed his symptoms (why do men do this?) and I found it difficult to ask some of the big questions in his presence. I pressed for how the bone cancer would be treated and she explained the 3 monthly implant was dealing with both cancers. Her upbeat manner allayed some of my fears and we were dismissed with her assurance we would see her again. It was not until we got home that I assessed what would happen now. She suggested we ask the GP for another blood test and I wondered how long it would be before she saw us again.

I feel I have no idea what the future holds or how long I should expect the cancer to be controlled. Reading other blogs on here with people quoting Gleason levels and T numbers I feel so ignorant.

I wonder how others view this experience? 

I must phone the specialist nurses on this site I think.

User
Posted 16 Oct 2020 at 23:30

Pookey,

Sorry to hear that story.

Your husband may not want to know too much about his disease - some men don't. If you can get him to tell his clinicians he's OK with them talking to you, they can do that, but bare in mind he probably won't want to hear it from you either.

You should probably talk about a Health Power of Attorney too, because at some point, you may need to take over healthcare decisions for him, regardless if it's due to prostate cancer or some other cause.

His T stage is M1b (metastatic to bones) from what you've said (TxNxM1b), and the gleason score is no longer particularly relevant at this stage.

I'm puzzled why he was on Bicalutamide for 2 years, rather than hormone therapy injections. I don't know what his diagnosis was at that point, but I can't think of anything for which that would be the normal treatment unless maybe he refused the injections. Bicalutamide will shrink the prostate but it's not used for that long term (Finasteride or Dutasteride would be used for that).

Edited by member 16 Oct 2020 at 23:35  | Reason: Not specified

User
Posted 16 Oct 2020 at 23:38

Hi,

Yes, ringing a PCUK specialist nurse is a good idea to ask general questions.   

Is there a Macmillan Nurse or other point of contact at the hospital.  I know they might not be able to tell you his case but they can talk generally although often you have to leave a message and wait for a return call which would let your husband know.

It can be a conflicting position for the male.  You don't want your wife to worry and you don't really want to talk about your most intimate things.   Yet you know you should and my wife often interprets it a bit differently than me or hears something I missed.   I can't think that a person suffering deafness and poor eyesight who doesn't look it up or talk about it will be asking anything, and will be taking the easiest route that has least effect on normality.

If you could offer him information that is useful he might bend to letting you sit in although it doesn't sound too promising.

I'm sorry I can't offer much on his treatment or options.   

All the best, Peter

  

User
Posted 17 Oct 2020 at 01:19
As it happens, he has done well for the bicalutimide to have worked for this long - when used as a long term treatment, it often fails after a couple of years.

So, just to be clear that you understand what is happening going forward -

- has it been explained that your husband will need to have the injections regularly (either monthly, 3 monthly or 6 monthly)?

- is it clear to you how he will get the injection - it will either be at the hospital or from the GP?

- do you know whether they will send him appointments for his injection or whether he has to remember to ask for a prescription & arrange the appointment himself

- you mention 'both' cancers - he doesn't have two cancers, he has one cancer that has spread to other parts of the body but it is still the same cancer

- the doctors can't share info with you without your husband's consent and it does seem pretty clear that your husband is not giving them that consent at the moment

- it is sensible to ask your husband about power of attorney but again, he would have to be willing & agreeable - a solicitor won't write it up just on your say-so.

A review appointment with the onco in 6 months is nothing unusual - he will just continue having the injections until they stop working, which could be a short time but is often many years.

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

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User
Posted 16 Oct 2020 at 22:34
You deserve answers, I hope your hubby has the sense to give you them...
User
Posted 16 Oct 2020 at 23:30

Pookey,

Sorry to hear that story.

Your husband may not want to know too much about his disease - some men don't. If you can get him to tell his clinicians he's OK with them talking to you, they can do that, but bare in mind he probably won't want to hear it from you either.

You should probably talk about a Health Power of Attorney too, because at some point, you may need to take over healthcare decisions for him, regardless if it's due to prostate cancer or some other cause.

His T stage is M1b (metastatic to bones) from what you've said (TxNxM1b), and the gleason score is no longer particularly relevant at this stage.

I'm puzzled why he was on Bicalutamide for 2 years, rather than hormone therapy injections. I don't know what his diagnosis was at that point, but I can't think of anything for which that would be the normal treatment unless maybe he refused the injections. Bicalutamide will shrink the prostate but it's not used for that long term (Finasteride or Dutasteride would be used for that).

Edited by member 16 Oct 2020 at 23:35  | Reason: Not specified

User
Posted 16 Oct 2020 at 23:38

Hi,

Yes, ringing a PCUK specialist nurse is a good idea to ask general questions.   

Is there a Macmillan Nurse or other point of contact at the hospital.  I know they might not be able to tell you his case but they can talk generally although often you have to leave a message and wait for a return call which would let your husband know.

It can be a conflicting position for the male.  You don't want your wife to worry and you don't really want to talk about your most intimate things.   Yet you know you should and my wife often interprets it a bit differently than me or hears something I missed.   I can't think that a person suffering deafness and poor eyesight who doesn't look it up or talk about it will be asking anything, and will be taking the easiest route that has least effect on normality.

If you could offer him information that is useful he might bend to letting you sit in although it doesn't sound too promising.

I'm sorry I can't offer much on his treatment or options.   

All the best, Peter

  

User
Posted 17 Oct 2020 at 01:19
As it happens, he has done well for the bicalutimide to have worked for this long - when used as a long term treatment, it often fails after a couple of years.

So, just to be clear that you understand what is happening going forward -

- has it been explained that your husband will need to have the injections regularly (either monthly, 3 monthly or 6 monthly)?

- is it clear to you how he will get the injection - it will either be at the hospital or from the GP?

- do you know whether they will send him appointments for his injection or whether he has to remember to ask for a prescription & arrange the appointment himself

- you mention 'both' cancers - he doesn't have two cancers, he has one cancer that has spread to other parts of the body but it is still the same cancer

- the doctors can't share info with you without your husband's consent and it does seem pretty clear that your husband is not giving them that consent at the moment

- it is sensible to ask your husband about power of attorney but again, he would have to be willing & agreeable - a solicitor won't write it up just on your say-so.

A review appointment with the onco in 6 months is nothing unusual - he will just continue having the injections until they stop working, which could be a short time but is often many years.

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

User
Posted 17 Oct 2020 at 07:44
I am not sure yet how this replying works on here.

What a wonderfully supportive site this is! I have so much to learn.

Thank you all for your replies.

I will ring the nurses when I have time but with still working part time and a carer it is hard work.

I am still mystified about access to Macmillan nurses. We see different staff each time we do manage to get to a hospital.

Perhaps it wasn’t cancer to begin with?? So bicalutamine was enough? The GP is now arranging ordering and administering his 3 monthly implant but you have to think ahead to attempt to get an appointment at the correct time.

I don’t think my husband is keeping things from me but just relies on doctors doing the necessary. Too painful perhaps to think about?

User
Posted 17 Oct 2020 at 14:02
Yes probably. A lot of men do bury their heads in the sand. If I don't think or talk about it..it's not happening, sort of thing.

My O H is a bugger for keeping stuff from me, he doesn't like me to worry. This however was too big so I get told everything. I probably know a lot more than him because I am the information gatherer.

User
Posted 17 Oct 2020 at 17:54
"Perhaps it wasn’t cancer to begin with?? So bicalutamine was enough?"

Bicalutimide is only given to men with prostate cancer, I am afraid. Whether he didn't fully grasp the diagnosis at the time (perhaps the doctor played it down a bit?) or whether he chose to keep it from you, only he knows.

Either way, it is now in the past and won't change what happens next.

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

 
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