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Worry about meeting the consultant on Monday

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User

Posted 26 Apr 2022 at 18:00

Hi Chris, that is one reason I am very worried - by his own admission he is inexperienced and will be supervised by one of the senior surgeons.

The other problem I have is that we went to the April support group meeting and there were 2 gents with major problems. One is on the waiting list for an artificial spinster and the other one has a suprapubic catheter. Not reassuring at all.

User

Posted 26 Apr 2022 at 18:02

Got a date now - 18th May 2022. Just hoping it goes well and OH has no extra issues (we know of incontinence and ED)

User

Posted 26 Apr 2022 at 23:19

Pleased you now have a date and can start to prepare as best you can. OH must religiously do the pelvic floor exercises (my hubby uses the squeezy app). It has been proven that incontinence issues are reduced if you get those muscles working.

User

Posted 30 Apr 2022 at 03:57

Hi Desperate Wife, It’s good to have a date and it’s not long to wait. Doing the pelvic floor exercises and generally keeping fit are the very best preparation and in my case, is certainly leading to a speedier recovery. I’m 73 and was diagnosed in January - Gleason (3+4). I had the option to have the Robot Assisted Radical Prostatectomy at the Royal Surrey in Guildford. Hormone treatment and radio-therapy didn’t appeal. It would have taken the best part of a year to complete and I didn’t want to put on weight and have a daily 40 mile trip for six weeks of radio therapy in the middle. I also run 3/4 times a week and need the activity for my mental health.

My RARP took place on 23 March. I was in and out in 24 hours. The surgery and care I had were outstanding. I had the catheter removed on 1 April. Now, 5 weeks post-op, my continence is almost back to normal and tomorrow, I shall do Parkrun very gently. The incisions in my abdomen were tiny, apart from the one where the surgeon exited the prostate. All healed well within days. I found swimming every morning for the last three weeks really helped. Psychologically, it helps because every day I felt stronger. From doing just two lengths to start with, I’m now happy doing 50. I can’t seem to get an erection any more, but it’s probably early days and I’m sure I can recover that in time. Next Thursday, I see my consultant to hear the details of the pathology results. I would encourage you to trust in your surgeon and the team. Ask all the questions you need to. They want the very best outcome for your husband and will do everything to achieve that. One final point is that anaesthetics and post-op pain relief are so sophisticated now, that in my case at least, I only experienced discomfort after about a week - but really no pain. The only pain I experienced was briefly when the spinal block went in - women in childbirth have this and don’t complain! I wish you and your husband well. We really do have world-leading cancer care on the NHS and are so fortunate to live in the UK.
Best wishes, Ian

Edited by member 30 Apr 2022 at 03:58 | Reason: Not specified

User

Posted 30 Apr 2022 at 07:11

Hi Ian, thank you very much for your very positive post regarding RP. My OH did not fancy HT/RT either. It is very encouraging that after such a short time you are doing the park run and that you are up to doing 50 length swimming.

May your excellent recovery carry on and reassure others facing RARP.

User

Posted 02 May 2022 at 10:40

I use CC on my blog all the time. In fact I've crossed out the Hormone therapy incidences and replaced with CC.

I'm thinking of doing the same for radiotherapy..to..... Radiation Treatment!

I don't want to put guys off but we need to de-sugar these terms!

My blog won't help the OP's husband much but it help others....it becoming more of an encyclopedia now! Quite a bit on the Radiation Treatment, even a video or two of me!

I've stopped CC early because of how it's affecting me but all men are different....

Edited by member 02 May 2022 at 11:27 | Reason: Update

Steve

Blog: prostatecancer.vivatek.co.uk

User

Posted 02 May 2022 at 12:10

I don't think it is "sugar coated" Esteban. It's called "radiotherapy" because it has a therapeutic intent. Prostate RT doesn't have any particular dire side-effects for the overwhelming majority of patients. Did you have any particularly bad RT side-effects?

Nobody enjoys cancer treatment, but it's a hell of a lot better than dying from cancer!

All the best,

Chris

User

Posted 02 May 2022 at 12:23

Esteban,

We must agree to differ about that!

Cheers,

Chris

User

Posted 02 May 2022 at 12:33

'I'm sorry but the word therapy conjures up whale music, crystals, essential oils....gentle massage ..'

No it doesn't. It is another word for 'treatment'. Merriam Webster defines it as 'therapeutic medical treatment of impairment, injury, disease, or disorder'.

Using terms like 'chemical castration' instead of 'hormone therapy' is hugely emotive for most men. Calling radiotherapy 'ionising radiation - x-ray photons created from bremmstrahlung' is just scary and not at all helpful. Most people will have no idea what 'bremmstrahlung' is, by the way, and will be no better off when they have looked it up. I knew when I signed up for radiotherapy that I would be getting very short doses of hard x-rays for 20 days. So what? The therapy is designed to destroy cancer, not the patient!

'Hormone therapy' and 'radiotherapy' are the commonly accepted terms, and I can't see any point in using other terms which will just add to the fear and anguish of those who have recently found themselves to be prostate cancer sufferers. Call it 'radiation therapy' if you prefer - but it is still therapy and has saved many hundreds of thousands of men.

Hermit

Edited by member 02 May 2022 at 12:35 | Reason: Not specified

User

Posted 02 May 2022 at 13:06

Originally Posted by: Online Community Member

Hermit

Totally agree. I have a PhD in physics and I didn't know what "bremmstrahlung" meant!

Cheers,

Chris

User

Posted 02 May 2022 at 14:07

Ok but read my blog. I'm not alone in suffering miserably with ADT, to the point of being treated as a mental health patient now. On mirtazapine and counseling .

And to finish me off... Covid! Day 8 and still positive! Grr .

Steve

Blog: prostatecancer.vivatek.co.uk

User

Posted 02 May 2022 at 14:31

I hope that now you're stopping the HT that it's not too long before you start to feel better, Esteban.

Best wishes,

Chris

User

Posted 02 May 2022 at 17:12

Hi Hermit of Eyam, you confused me a bit with bremmstrahlung as there is no such word in the German language. You are talking about Bremsstrahlung for which a simple translation is braked radiation (Bremse = Brake and Strahlung = radiation)

User

Posted 02 May 2022 at 17:27

Which is, of course, much clearer.

User

Posted 03 May 2022 at 10:28

Yep. I got ticked off by one radiographer during one of my RT sessions for saying the machine's power was 6 MeV. He said no it's measured in MV. I had to go home and look that up....if a radioactive element decays, it can give out some energy...this is fixed and is quite precise. In the RT treatment they use a linear accelerator to produce the x-rays. They accelerate the electrons to very high speeds then fire then at a target, usually a lump of tungsten. The electrons decelerate.. very fast ...if you like, they scream when they do this...this scream is x-ray energy....it can be anything from zero up to 6 MeV ..so a whole range if energies. Hence the ticking off....6 MV and not 6 MeV. Simples. eh. End of physics lesson!

Steve

Blog: prostatecancer.vivatek.co.uk

User

Posted 03 May 2022 at 17:47

Hi, got the date for RARP, his Covid swatch and pre op check, but no meeting before hand where everything is explained to both of us.

When I rang one of the nurses in March to ask some questions, I was told there would be a meeting where everything would be explained and that somebody would ring me when OH is out of theatre to let me know how things went.

This is not happening either instead I have been given a number, which I may ring with their kind permission to find out if OH is ok, or wait until he is on the ward and he can ring me.

Also I am not allowed to visit him. On the 19th I can drop him off at the hospital and then? Not sure what happens then. Will somebody ring me to let me know when I can pick him up? Or does OH ring me?

When does the hospital decide when to remove the catheter? Time given is 7 - 10 days. I will have to drive OH to the hospital (about 17 or 18 miles), when will they let us know? I work full time so I need a time frame so I can arrange time off with work.

Sorry for the rant.

User

Posted 03 May 2022 at 18:52

He'll probably be given the appointment for the catheter removal when he's discharged. That's the usual procedure. It would be a good idea, in the mean time, to go to the chemist and buy a pack of Instillagel. This is a local anaesthetic gel that can be squeezed into the tip of the penis if the catheter makes it sore, which is very common.

I hope everything goes smoothly for the surgery and recovery.

Very best wishes,

Chris

User

Posted 03 May 2022 at 22:51

Hi DW, I know all hospitals are different. We had a telecon with surgeon prior to surgery where everything was explained. Lots of info sent in the post too (exercises, what to pack in hospital bag etc.) We were given tel nos of nurse specialists who we could ring at anytime to ask questions, After the op, the Surgeon called to tell me everything had gone well with no complications and he was in recovery etc....... I then called the ward, 2 hours later to check he was back. I didn’t speak to him until the morning after surgery. When he knew he was being discharged and had all his drugs, I collected him. Just under an hours drive.........As CC says, appt to remove catheter was given before he left hospital. The instillagel is a must, we got some from district nurse who called us to let us know they were there if we needed help with the catheter. Speak to the prostate cancer uk specialist nurse and ask for a post surgery pack. They will post you one out. They are super helpful and will answer any questions you have. Hope you can fill your time between now and the op. Hoping it all goes well X

User

Posted 04 May 2022 at 06:14

Dear Jayney P, thank you - pack arrived yesterday. Will get the instillagel. Been told already the district nurse will not be involved, so will have to rely totally on the Prostate Uk and MacMillan nurses. Wishing you a good day

User

Posted 13 May 2022 at 12:43

got a question for all who have had RP - we ended up having a video conference with a nurse going through all the details. I asked about visiting OH afterwards and the nurse asked me why I would want to visit him as I was going to pick him up the next day. I told her because I love him and want to give him comfort. Her reply was he might not feel like having a visit the same day.

OH has indicated that he really would like me to sit next to his hospital bed when he is brought from the recovery room.

Questions to you guys - how did you feel about your partner visiting you after RP. Were you glad to see them or did you wish they had not come?

Thank you

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