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Ever Decreasing Circles part three

User
Posted 24 Apr 2015 at 18:34

Sorry to hear this Paul. PSA dropping chances are it is muscular as you suggest. Could it be a side effect of the casodex?

Hopefully the pain will start to ease off over the weekend. Perhaps a jaunt up the A1 to West Yorkshire to cheer you up or maybe not depending on the score

Bri

Edited by member 24 Apr 2015 at 18:35  | Reason: Not specified

User
Posted 24 Apr 2015 at 19:48

Hi Paul,

So you have escaped A&E good for you I am glad to hear it's not a DVD that would have been very unpleasant http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif. I think when any new symptom arises it is very hard not to think that it is PC related especially for those of with us mets.  I know I always try and keep the sensible side of my brain (no wise cracks guys) to the front and then the what IF side takes over. 

I am wondering if the low mood could be side affects , Trevor is in much better spirits since stopping the Bicalutamide. 

Rest up enjoy the weekend and come back fighting.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif

BFN

Julie

NEVER LAUGH AT A LIVE DRAGON
User
Posted 25 Apr 2015 at 17:48

Thanks Julie and Brian. My mood has lifted today particularly as my cricket team has just beaten the champions! I think the pain was affecting my capacity to think and that stops me doing most things. So pain regime working and I think it feels a little better today.

User
Posted 25 Apr 2015 at 18:15

Paul

Hope your treatment shows quick results. Good to see players from Yorks and Lancs doing England proud.

Paul

Stay Calm And Carry On.
User
Posted 25 Apr 2015 at 21:11

Good to hear things are improving Paul

Bri

User
Posted 26 Apr 2015 at 14:07
Paul I am sorry you have been feeling low and having unexplained pain.

You are always so philosophical so I am sure you will bounce up again once you know what is ailing you.

Thinking of you

Xx

Mo

User
Posted 01 May 2015 at 10:26

Quick update on my leg after seeing my GP today. It has been easing all week with a combination of pain relief and rest. So the worse of the symptoms had retreated. He feels the likely source of the thigh pain is linked to nerves and not muscular or anything more sinister. He will write to my uro recommending a bone scan as a belt and braces approach which hopefully might get me an up to date scan. Also mentioned a Dexa scan (thanks George) and he indicated it would be unconnected to this problem but might be worth doing. he will mention it to uro as well.

The bursa problem (my pain in the bum) has now brought a referral to an orthopaedic medic to see if an injection would help. He thinks that the thigh pain may be linked in some way to the continued pain in the bum so he agrees we should look at that further. Agreed I should apply for a blue badge too as all this affects pain free walking for any distance at all.

So no clear outcomes but a supportive GP, gave me time, listened, supported and took action, I,m off for a weekend with my kids, they take me away for my birthday, (and I don't know where until we get there) so with no UTI at the moment, leg pains eased and manageable with pain relief, self catherisation down to twice a day and no urgency to pee in the day due I think to the casodex, I guess I am as fit as I can be for this! Feeling upbeat again, may even have a drink to celebrate.

User
Posted 01 May 2015 at 11:00

A drink to celebrate sounds a darn good idea. Enjoy your weekend with your kids . These are the things that are worth fighting and living for. Cheers Georgina

User
Posted 01 May 2015 at 11:23

A supportive GP is a great help. Enjoy your surprise break.

Paul

Stay Calm And Carry On.
User
Posted 01 May 2015 at 11:43
Nice one Paul it sounds as though life is good again. Enjoy your weekend and I hope to see you soon.

Xx

Mo

User
Posted 02 May 2015 at 08:21

Good news Paul, have a lovely weekend . Hoping to see a few photos on FB.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 02 May 2015 at 10:20
Paul

Good to hear things are easing, I know we ISC for different reasons but you will have to show me your ISC technique in June, I am struggling to get mine into the bladder.

Thanks Chris

User
Posted 02 May 2015 at 17:14

Good to hear things improving Paul. Have a great birthday.

Re Julies request and Chris's request perhaps you could kill two birds with one stone....you will get banned from FB of course and maybe lose your job lol

Take care
Bri

User
Posted 02 May 2015 at 17:17
Glad you have positive progress, have a great birthday, Kev

Dream like you have forever, live like you only have today Avatar is me racing in the Sahara April 2018

User
Posted 02 May 2015 at 17:42

Pleased for you Paul, have good weekend.

dave

Do all you can to help yourself, then make the best of your time. :-)
User
Posted 02 May 2015 at 18:40
Hope you're having a great weekend, Birthday Boy Paul.

See you in June.

Steve

User
Posted 03 May 2015 at 20:25
Delighted to hear that your GP was properly sympathetic and offered sensible thoughts and actions Paul. I think john always feels better when someone seems to actually care.

Happy birthday my friend

Love Allison

User
Posted 04 May 2015 at 14:34

Happy Birthday, Paul, glad to hear some progress , long may it continue !

Fiona. x

User
Posted 04 May 2015 at 20:10
Happy birthday Paul judging by your fb post you have had a wonderful and happy weekend.

Xx

Mo

User
Posted 05 May 2015 at 15:23

Just home and back at work and catching up. Thanks for all your kind words and comments and I got through a wonderful weekend unscathed and my leg feels ok and hopefully the other actions I agreed with the GP will happen in due course.

For the statistically minded my birthday is actually next Monday 11th but my kids always take me away on MayDay Bank holiday so we get an extra day. It was so relaxing in Swaledale, and as Mo says pics on Facebook. The biggest surprise was my best friends appearing in the pub on Saturday afternoon, in a secretly planned rendezvous. They stayed for a wonderfully cooked meal by my children and we had a great night.

User
Posted 05 May 2015 at 17:43

I love Swaledale and the photos are superb Paul. Pleased that the pain is easing a bit as well - and more celebrating to come I suspect xxx

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

User
Posted 05 May 2015 at 23:15

Hi Paul,

I'm pleased you had a great weekend.  I saw the pics on FB too, you make me feel very jealous, I could really do with weekend there, it looks really beautiful in that area.

Hope you have a great Birthday, when it arrives. 

Looking forward to meeting up with you again next month.

Steve

User
Posted 01 Jun 2015 at 17:36

I am not sure if it is a good idea to report straight after a consultation but it might help me make sense of what was a somewhat uncertain and difficult to grasp outcome. Once again my new uro was clearly on a time clock as he sought to get me in and out without pausing for breath. Until I mentioned it he did not refer to a letter from my GP concerning the leg pain and asking for a DEXA Scan and a bone scan.

Anyway my PSA has risen from 18 to 26, not disastrous but given I have only been having casodex for just over five months it looks as if it is already ceasing to work. He told me that the oncologist had refused my request for a meeting as my PSA was going downwards but now though it was time to pass on to the onco so, hopefully, should get an appointment and see where that takes me. He said he would consider a Dexa scan.

When I mentioned the problems with my leg and whether there might be a rogue bone met causing problems, hoping that this might lead to a bone scan he sent me off for an x-ray. I asked if I should come back with the results but he said not so though I have had an x-ray it could be a while before I get any outcome.

He did not mention my UTIs despite being in the middle of one last time I went nor my rate of catherisation. I was left feeling a little frustrated and not really having a conversation. It seemed disinterested as if explaining what he was happening was unnecessary.

I asked him whether the recent results coming out of the STAMPEDE research would impact on my treatment and he replied yes it is likely Abby tab or enzo would be next. I decided he perhaps was unaware of the research I was referring to, I.e. The use of early chemotherapy and decide to await seeing the oncologist.ni was beginning to lose faith at this point.

So an unsatisfactory meeting, a little further down the road, the circle gets slightly smaller but hopefully I get some action on my leg and at last get to see an oncologist.

User
Posted 01 Jun 2015 at 19:08

How frustrating for you Paul.
Sometimes you feel like you could scream and shout at some of them, they already have their minds on the next patient or their tea break.

Fingers crossed for an early appointment and hope the leg continues to improve.
Would it be possible to leave it a week or so and ring his secretary for the results of the x-ray?
Best Wishes
Sandra

We can't control the winds - but we can adjust our sails
User
Posted 01 Jun 2015 at 19:14

Hi Paul,

and I am sorry to read about a less than satisfactory "consultative experience" for you.

Might it prompt a more attentive and concerned approach for the next appointment, might even prompt them to get you in sooner to remedy the damage, if you were to write to the persons concerned and their immediate supervisors outlining how you felt about being treated as though you were on a conveyor belt, and having raised concerns about existing conditions, that these were then brushed over and ignored?

I have always found a written observation/complaint is taken far more seriously than a verbal one, and it is there on record.

atb

dave

Do all you can to help yourself, then make the best of your time. :-)
User
Posted 01 Jun 2015 at 19:20

Hi Paul

There are those medics who are real people persons, and those who look at you as statistic, and have no empathy whatsoever. I think Dave has given you some wonderful advice. Whatever news and treatment options you are offered, it is undignifying to say the least to be treated as someone just passing through.

Paul

Stay Calm And Carry On.
User
Posted 01 Jun 2015 at 19:22
As you know Paul I find this kind of treatment extremely frustrating, well it makes me angry actually. I also know you have seen the difference in approach as Mr P always had the time to talk through any concerns and genuinely cared.

Sorry to hear about the rise Paul but perhaps the fact it has acted as the catalyst to seeing the oncologist is a positive. I can't comment on her really as my meetings have been brief but probably because my PSA was dropping.

Paul you are such a lovely, placid and easy going person, and please don't take me the wrong way, but I think you should now start to assert what you want regarding your treatment. We always assume that the professionals are well up to speed with the latest research and treatment but as we well know, and as seen at your consult today, regrettably that is not always the case

Paul maybe we need to start attending the Donny support group were men share their local experiences.

Always available to chat

Bri

User
Posted 01 Jun 2015 at 19:23

I can feel your frustration Paul, I just hope that the appointment with the Onc will give you more answers and hopefully a better bedside manner. There is nothing worse when you wait for ages for appointments and then come away with an empty feeling.

The X ray would be a total waste of Tax payers money if it is pc spread, why oh why do they do these things. Of course it may not be spread but it is so difficult not to think this way when you are in our situation.

The rise in psa could just be a blip but either way with this frustrating appointment my advice would be to very gently minding your pain and do some jumping and down with a lot of load knocking on the Onc's door.

It makes me so wild.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 01 Jun 2015 at 20:11
I am so sorry to read that you are not being given the care you deserve, I totally agree with a formal letter setting out your concerns and what your understanding of actions could be at this time, is it possible to get a second opinion at this stage?

Time to get angry me thinks too.

Kev

Dream like you have forever, live like you only have today Avatar is me racing in the Sahara April 2018

User
Posted 01 Jun 2015 at 20:35
Paul

I am lost for words, well almost...

IMHO you should have been seeing the Oncologist for a while, I sometimes wonder if Urology hold onto patients for budgetary reasons it just makes me angry.

You know that we are all so fond of you because you are such a lovely gentleman and a clever one at that. I would take Dave's advice first and just write a letter outlining what you have said here, phone calls and verbal conversations get lost in translation so to speak but a letter is pretty specific and it starts a recorded dialogue too.

I kept notes of every meeting, copies of every letter or e mail during Mick's illness just in case I ever needed to recall information accurately. If he had ever been treated like you just have I would have done something with those notes for sure.

The X ray is probably a waste of time as JUlie says other than to discount a fracture or clot as far as I am aware mets do not show in a standard x ray only in the proper bone scan or MRI. The problem may not be mets at all but it really does need clarifying with that rise in PSA and for the pain you have been having.

Write your letter and in the meantime ring the Urology consultants secretayr and ask for the name of the Oncologist you are being referred to, then ring his/her secretary explain that things have been far too truncated and ask her for a speedy appointment.

worth a try

See you very soon my friend

xx

Mo

User
Posted 01 Jun 2015 at 21:09

I am absolutely livid at this - just shocking. You know my view; the onco needed to be more involved months ago. Could you ask the GP to refer you to a different onco for a second opinion - I would have liked to see what our Mr B thinks.

I wish you would let Mo & I attend the next appointment with you💪💪💪💪

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

User
Posted 01 Jun 2015 at 21:28
Paul

I just don't understand what they are doing with you. Surely you should be having a bone scan now? Your treatment is little short of disgraceful. Please complain, it simply isn't fair to treat people like this.

This is so completely opposite to our treatment (so glad we signed up for Stampede even though we got the control arm they still care for us). It is simply disgusting.

I'm sure Lyn would come with you next time, I'd take her up on her offer, I know she means it. Sometimes you lovely men are not your own best advocates.

Your PSA is going up steeply, I suggest they do something sharpish.

Lots of love

Allison

Edited by member 02 Jun 2015 at 21:13  | Reason: Not specified

User
Posted 01 Jun 2015 at 21:51

Just a side note on the X ray point, Trevor had 3 chest X rays before diagnosis and they all came back clear these were to find out why he had chest pain. In hind sight the pain and difficulty breathing was because of metastasis in his ribs . X rays in my opinion are pretty useless in this situation. Fight your corner Paul, if only I had known then what I know now. This is just another case of Cancer patients not getting the care that they deserve. Writing a letter is a good point but I would also be ringing and demanding what you so rightly deserve.

BFN

Julie x

NEVER LAUGH AT A LIVE DRAGON
User
Posted 01 Jun 2015 at 22:01

Hi Paul,

Really shocked and disappointed about the way you're being treated.  I agree with others, write letters, ring the consultant's secretary (when you discover who you are due to see), don't stop until you get something sorted. 

Is it worth writing a letter to the chairman of your local Health Trust?  I've got to know our local chairman quite well and he was very concerned that I was happy with my treatment.

Take advantage of the offer of help from Lyn and Mo if you need extra support in meetings.

You're a great guy and deserve the best treatment.

Steve

 

User
Posted 01 Jun 2015 at 22:11

Paul

Another thought...why don't you phone and speak to Tina...she is a decent person and I am sure would take your concerns on board and possibly get things moving

Just a thought

Bri

Edited by member 01 Jun 2015 at 22:11  | Reason: Not specified

User
Posted 01 Jun 2015 at 23:29

The trouble is Steve that Yorkhull is a professional and will probably do a better job by outsmarting the guy than I could ever do with tears, tantrums and a short skirt!!!

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

User
Posted 01 Jun 2015 at 23:32

Wow, I go out to a meeting after posting my message and come back to many wonderfully supportive messages basically asking me to take immediate action! I will sleep on the suggestions made. I know there is a temptation to shout and write and complain but it is not my style but I am no pushover. I was disappointed with what happened or did not happen today but I did figure that I shall get to the oncologist now and hope that I get clearer support from her! I think what disappointed me more than anything was that in three appointments he has never taken any time to get to know me so I am just a number and he responds accordingly. This was not my experience with either of the two previous uro's and they explained, listened, supported and took my thoughts on board.

I may write to ask for an explanation of why an x ray instead of a bone scan which was my biggest disappointment. But I like Brian's suggestion of going to see Tina, the nurse practitioner who has always been very supportive.

I was surprised, taken unawares really, by the rise in my PSA. I had confidently expected it to go down again. If my theory about the amount I catheterise has any relevance I am still doing quite well so had assumed the prostate was still shrinking. Maybe it is and the rise is not enormous but there was no real discussion.

Thanks for your support you caring lot, I shall sleep on what to do next but not ready to bring out the big guns yet!

User
Posted 02 Jun 2015 at 12:01

Just to update after a somewhat restless night, I have arranged to see the Senior Nurse Practitioner tomorrow to discuss various elements of my visit before considering any other action, I have decided that I need to push for an oncology appointment and hope she can help facilitate that and start afresh with her and let my uro go. But I will report back! I feel unsettled today but happier I have a chance to review everything tomorrow.

User
Posted 02 Jun 2015 at 12:56

Hi Paul,

Sorry to hear that the PSA has risen, really hope you get to see the oncologist soon.

Look forward to seeing you soon

Si

Don't deny the diagnosis; try to defy the verdict
User
Posted 02 Jun 2015 at 20:49

P

Sorry to hear things are not going too well, unfortunately to some medical staff we are just patients and not people. See you soon.

Thanks Chris

User
Posted 02 Jun 2015 at 20:53

Good luck for tomorrow. I am sure you will make your point in your own way very effectively. Let us know how it goes please?

atb

dave

Do all you can to help yourself, then make the best of your time. :-)
User
Posted 02 Jun 2015 at 21:04

Paul would you mind asking Tina when the next support group is plse

Bri

User
Posted 03 Jun 2015 at 13:15

Well what a difference a day makes. I spent 45 minutes with the senior nurse practitioner and feel totally happy now and this has restored my faith in the NHS. T has been brilliant throughout and though I have not seen her a while maintains awareness of my situation. I told her straight what had happened and that I had contemplated a complaint. She offered to facilitate that if I wished but also focussed on sorting out the issues. I understand I am not the first person to be concerned about the brevity in the consultations which take place with the new man and she has already discussed the issues with the clinical lead.

I told her what I really wanted was to understand my treatment path, get support when I need it and move to an oncologist. The outcome was that:

1) She would chase up the results of the X-ray which were also done to eliminate a fracture and let me have the results.
2) she ordered a bone scan to take place in the next two weeks as she agreed that the x ray could not eliminate bone met spread
3) made a provisional appointment with the lead oncologist in Sheffield for an appointment in just under three weeks time
4) Has changed my urologist to one who specialises in oncology as we both recognised I need continued support for problems around my water works. (So I will not see the same uro again!)
5) talked to me about all my little queries and processes. She shared my sense of loss since my original consultant moved on but made sure all my queries were answered.

The result is I feel reassured, the investigations into my leg will proceed quickly with a bone scan and likely a CT Scan when I meet the oncologist. The door was definitely open for me to raise any query. I did not need to argue or protest she understood why I had come and what needed doing. I feel so much better to have done this and thank Brian for the suggestion. I got everything I wanted and will not pursue a complaint as I believe my concerns will lead to some action anyway.
I do not like confrontation if I can avoid it and this was the perfect outcome. I learnt more about my situation in that 45 minutes than I have since my first uro moved on, peace has been restored.

User
Posted 03 Jun 2015 at 13:26
Really pleased for you, Paul.

Steve

Edited by member 03 Jun 2015 at 13:27  | Reason: Not specified

User
Posted 03 Jun 2015 at 13:34
Great outcome Paul, let's hope that the various tests get to the bottom of it ( no pun intended!). Kev

Dream like you have forever, live like you only have today Avatar is me racing in the Sahara April 2018

User
Posted 03 Jun 2015 at 14:55

Brilliant news Paul sometimes just to feel we are being listened to is enough to restore our faith. I am also a pacifisthttp://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-innocent.gif (well a whimp really ) so achieving your goal through your own way is such good news. Well done.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 03 Jun 2015 at 14:59
Paul

So pleased everything is now being addressed and quickly too. Why the senior nurses like T are not more directly involved amazes me. Clearly she has a much better patient empathy and understanding than some of the consultants! What is more she takes immediate and direct action no fannying around with referring to the MDT just straight in with bone scan and oncology appointment just like that!

I hope Lyn has got the message to stand down you do not need either of our Rottweiler services at all.joking apart I think a non confrontational approach often has a better long term outcome so bravo to you for being the placid, sweet and kind gentleman that you are.

See you in a couple of weeks time.

Best wishes

Xx

Mo

User
Posted 03 Jun 2015 at 15:05

Great news Paul...Tina is a doer and it's obvious she genuinely cares.

I think you will be seeing Mrs F then who is ok.

Bri

User
Posted 03 Jun 2015 at 16:15
Seems like you got a result there Paul, good news all round and someone who is supportive and wants to help you

Arthur

User
Posted 03 Jun 2015 at 18:33

Shame, I had already packed an overnight bag and sharpened my teeth.

Seriously, I am so pleased that you have sorted this out - thank God for people like T 👼

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

 
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