Very anxious

Very anxious

User

Posted 03 Aug 2014 at 21:41

I am 73, retired and living in the South West.

Early in July my doctor referred me to the Prostate Clinic at the local hospital. She said my blood test showed a slight increase in PSA value, but she sounded upset and that worried me. At the clinic I found the PSA values in 2011;2012;2014 were 7;10;18. I have no symptoms. DAE found the right side slightly enlarged and with irregularities. After am MRI scan I had a biopsy. Later this week I return to the clinic to hear the findings. I had so far been calm and modestly anxious. It was when I confirmed that I would attend the clinic at the time proposed during the first visit I became acutely anxious. Now, three days later, I have again relaxed to a more sensible emotional state.

I had been almost total ignorant of prostate matters but have over the past three plus weeks done quite a lot of homework and have some idea of the manner of recording progress of the disease and something of the treatments. I am still finding it difficult to gain much perspective and of course do not yet know my current position.

User

Posted 04 Aug 2014 at 08:17

Hi George

The state you describe very well describes the state we were in during those weeks before a formal diagnosis. Anxiety prior to appointments but time passed in a strange mist in the middle periods. We can barely remember those times now, which were over three and a half years ago. My husband had a dire diagnosis, WI a Gleason score of ten and spread to lymph and bones. And yet here he is still ok and living a happy life. Tell your wife. George, she won't thank you for keeping her in the dark my friend, it's a huge thing in your life and you need to support each other, cry together if needed and make plans to enjoy your life.

Best wishes for the results George and please let us know how you get on.

Kindest regards

Allison xx

Edited by member 04 Aug 2014 at 08:29 | Reason: Not specified

User

Posted 04 Aug 2014 at 08:53

Hi George,

Without doubt the first few weeks waiting for results are the worst, when all the scores are on the doors it somehow becomes easier , you will then know exactly what you are dealing with. Just to put things in to perspective my OH was similar to Alison's OH , his starting PSA was 13000 with spread to bones, kidney and lymph nodes. 1 year on and he is doing well with a PSA of 15.2.

I would agree with Alison and TG about involving your wife, no man is an Island and she probably suspects that something is not right as TG says we are a canny lot. You will need each other in the coming weeks.

Good luck for your results, let us know how you get on.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 04 Aug 2014 at 09:59

hi George

my best advice is take someone with you to your appointment

go armed with any questions you have written down

get the person you are with to write down replies

then you have these to digest at a later date

i know with my husband he seemed to take things in then a few days later would ask me what did they say about x or y

I hope that it goes well for you

User

Posted 05 Aug 2014 at 09:35

As far as patience is concerned I'd say a general yes.

What you have to consider first and foremost is that this is

YOUR life you are talking about. Whether the consultant is impatient or not is really his/her problem.

You have to be satisfied in your own mind that before you leave you have all the relevant information you need towards making any decisions.

At some stage big decisions will need to be made and you'll have to make them for yourself.

Generally hospital staff will leave your final choice up to you, although I know some on here have actually asked for advice and received it from their consultant.

If you are concerned that you may not hear properly then before you begin explain that you have a hearing problem and are likely to ask him/her to repeat certain things.

I go in armed with my list of questions and a pen and tick them off as they are asked and answered. I make a quick note of spellings for certain words and look them up later, and I'll do a quick note about certain things to remind us for later.

I am not even the patient - my husband is. Even he is used to it now!!!

Should the doctor be foreign and English not good then having explained you are hard of hearing will get you round the repetition bit.

I do understand your problem with your wife's anxiety. We all offer our advice but only you know to what extent she will be affected by what is going on. You will be adding to her current burdens but she will need to know at some stage. I bet she'll be a real trouper and support you through and through

Good luck. Keep posting and asking for support. You'll get it on here.

Best Wishes. Sandra

We can't control the winds - but we can adjust our sails

User

Posted 05 Aug 2014 at 09:51

Hi George

Have you considered recording your conversation at your appointments, as if have found it helps by reviewing the recording later on, as it is so easy to mistake what was said at the time, when emotions are running high.

Roy

User

Posted 05 Aug 2014 at 10:20

hi had no problem with me taking notes

my husband like you is hard of hearing one of the many reasons I accompany him to any appointments

good idea from Roy is to record conversation so you can review it at later date

marie

User

Posted 05 Aug 2014 at 10:21

Do you have a friend/relative who could go with you? During diagnosis of my OH I was in hospital having a baby, so after the birth my midwife actually went with my OH to take notes. She was a great support as not too involved and could answer all my questions later. Of course her medical training helped, but a friend/ex-colleague may be pleased to help you?

Good luck.

Alison

User

Posted 05 Aug 2014 at 11:36

Hello Sandra

Thank for this long helpful note. It is really most kind of you to spend so much time and trouble on me.

Yes, this is not the time to be diffident. I and my wife do need to be properly informed as to facts and to know what are facts and what are best informed guesses. We also need to know likely consequences. My researches so far suggest that treatments are best guesses for each person and no proven route to suite all exists.

Thank you for those supportive words on deafness. People find it very difficult to really understand. Very often the slower speech and clearer annunciation are forgotten by half way through the next sentence. So I will make clear my disability up from and ask for repeats even if the consultant shows signs of suppressed impatience. I shudder at the thought of wrestling with a foreign accent. If communication is really uncertain I will ask for a repeat consultation. Thank you for bringing me to that point in advance.

I have in another conversation mentioned my note taking.

Yes, my wife will be a trouper. No difficulty with that. Keeping her unemotional and to the point is the thing. She is an ideas person and produces a torrent of ideas. I need those ideas but we need to pause long enough to evaluate them. (But I have only 50 years of practice and have still not mastered the art.)

Thank you for your support. I shall certainly need some more whatever the results.

George

User

Posted 05 Aug 2014 at 16:48

Hi George

I have never had a problem with the specialists agreeing to be recorded, and given your difficulty hearing I would assume they would be more than happy as long as you ask politely, If you have a tablet or smartphone then there are free apps you can download to enable you to record.

Roy

User

Posted 05 Aug 2014 at 19:20

went to consultant appointment today with Paul was already with notebook but didn't need it as 3 months after his operation things are going very well

at the appointment was an urology nurse linked to Macmillan support

thinking back there has been one at every appointment

so if there is Im sure if you take a list of questions in with you she would be glad if asked to write the answers down for you

not sure if this would be the same for your area but that is how they do it in Hereford where we are from

marie

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User

Posted 04 Aug 2014 at 08:17

Hi George

Best wishes for the results George and please let us know how you get on.

Kindest regards

Allison xx

Edited by member 04 Aug 2014 at 08:29 | Reason: Not specified

User

Posted 04 Aug 2014 at 08:53

Hi George,

Good luck for your results, let us know how you get on.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 04 Aug 2014 at 09:59

hi George

my best advice is take someone with you to your appointment

go armed with any questions you have written down

get the person you are with to write down replies

then you have these to digest at a later date

i know with my husband he seemed to take things in then a few days later would ask me what did they say about x or y

I hope that it goes well for you

User

Posted 04 Aug 2014 at 21:05

Thank you Alison. My wife has an ongoing problem with a family member and attributes a recent life threatening infection (a week in hospital) to prolonged stress over it. She was in tears over a further incident at the week end. I must bring her into our prostrate problem. I think in view of her upset I should start serious discussions whether she is ready or not immediately after I get the results. She knows about my visit to the clinic and the scan and biopsy but has not been curious as to what I think about it or what prostate cancer is about. She hardly considered the news her brother was diagnosed with prostate cancer two weeks ago. A discussion on possibilities partially understood I fear might wind us both up. I certainly do not want to return to a state of acute anxiety and be ineffective at the clinic. Still, that is a man's way of thinking. George

User

Posted 04 Aug 2014 at 21:21

Hi mb. thank you very much for that list. I know what you mean about forgetting and needing it written down. I experience that for a much, much less threatening condition some 30 years ago.

My wife would not be a help at the next clinic but would be at subsequent clinics. I have one friend who would be of practical help but is not available for the clinic. Did you find that your urologist was patient with note taking? I am used to doing that. But my poor hearing is a problem and new names very difficult. However I have done a lot of homework and might have covered sufficient ground to make comprehension reasonably quick. I am quite used to asking people to repeat themselves and to speak more slowly. It is after all an interview far more important to me than it is to the urologist

Sorry if I am rambling. My question is, Did you find that your urologist was patient with note taking?