Coronavirus delays

User

Posted 31 Mar 2020 at 14:16

How you getting on .

Carl.

User

Posted 31 Mar 2020 at 14:23

Hi, just keeping as busy as possible really.

Any news on your op yet? How are you and your wife doing?

Mel

User

Posted 31 Mar 2020 at 14:30

No news as yet. Just trying to keep busy and keep my mind focused. If I’m honest I’m not sure I want the op done right now, for obvious reasons. I’m not sure it’s very safe to have an operation of this type with covid 19 being so prevalent. It’s awful how they just cancel at last minute all the time with a lot of the guys. What are your thoughts ?

Carl

User

Posted 31 Mar 2020 at 14:37

I totally understand your reservations. Possible exposure during or even post op is worrying. Can they give you info on hospital set up & whether staff have only been working ‘cold’. Not with patients suspected or confirmed as CV19?

Have you discussed nomograms with your Consultant? This is what we were due to do last wk. Could they guide you on what delaying would mean for you personally, to help you make an informed choice?

Mel

User

Posted 31 Mar 2020 at 19:51

Hi Carl, Thanks for your private message. I'm not allowed to send private messages myself yet as I'm too new a member. Apparently this will change when I've made more forum comments. However, the answer is, he hasn't phoned. I was promised he would ring me on Monday, but nothing heard then or today. I'm trying to rationalise it's because he has more pressing cases.

User

Posted 31 Mar 2020 at 21:46

Sorry to hear you’ve not been contacted, if it’s any conciliation I’m in limbo too, I’ve heard nothing from any of the PC team. I’m sure they are extremely busy but it does make me feel vulnerable and forgotten almost like we are not worthy because of this virus. The uncertainty is driving round the bend as I’m sure it is for all the guys waiting for surgery or treatment

Stay strong, stay safe...

User

Posted 01 Apr 2020 at 12:49

Hi all, just popping in trying to put my mind at rest. I forget about it all for a short while then......Boom.

With the TRUS being cancelled and nowhere being able to offer a scan privately it’s pretty scary . I’m fairly convinced what the results will be and if it is PC the not knowing how long it’s been there and the consequences of how much longer it may go untreated is awful (even though I’ve read that some folk take 6 months to decide what treatment they want).

Hubby is keeping busy and with the decent weather has been out in the garden every day.

🌹

User

Posted 01 Apr 2020 at 18:31

Its a worrying time isn’t it ... secretary at my partners GP said no blood tests were being done even though he explained its the first test since starting hormone treatment but she would speak to someone. Eventually he got call back to say they will be doing his PSA test so thats a relief just keeping fingers crossed its gone a little.

Some days you just have to create your own sunshine......

User

Posted 01 Apr 2020 at 18:46

It certainly is tough times indeed.

We can only hope this peak passes as quickly as possible, and the remaining affects are low enough for other services to resume.

Plan to call GP tomorrow for bloods appointment (hopefully). It’s hard to find comfort with such uncertainty but at least we can talk to each other 😊.

Mel

User

Posted 05 Apr 2020 at 10:16

My husband Tim is awaiting his op in Portsmouth QA but properly not till August September time ?? Due to this virus the most annoying thing is your told your treatment and that's it wait till you see the consultant to discuss treatment plan which they have advised removal of prostate but nobody seems to tell you the after effects and what can happen, so thanks to all you guys on here telling and speaking of your experience it's a great help.

User

Posted 05 Apr 2020 at 12:26

Consultants would love more time to spend with patients, but that's just not available (even in normal times). Appointments (at least in a couple of hospitals I know well) are 15 mins before your main treatment, and 10 mins after your main treatment. That includes the dictation time to update your notes and write your GP letter.

I was lucky in that my diagnosis hospital had a couple of urology CNS (Macmillan nurses) who could spend time with patients, but now that I'm involved with supporting more patients and at more hospitals, I'm aware there's a massive shortage of urology CNS, so that support isn't available to many patients. (And in this coronavirus era, many CNS's have been moved back onto coronavirus wards, as they will mostly have done ward work in the past before specialising).

A couple of consultants picked up on me being what they call an expert patient, and asked me to lead a support group session. I picked one of the topics which I had researched very well for myself, because no one told me anything about it, Surviving Hormone Therapy. This went so well, they've asked me to do it again for newer patients coming on to hormone therapy, and I was just starting to run them every 2 months when coronavirus reared its ugly head. This gives patients a whole afternoon to discuss the topic. I'm really pleased to be able to contribute back, and as this developed into something more than just a single support group session, I got access to consultants so I can ask questions and get them to review my materials. I'm hoping to get back into this after the lockdowns. (I'm going to test it out as a Zoom session for one of the local support groups.)

I know of prostatectomy classes run by some hospitals so do ask if there's one at yours. My hospital did a radiotherapy class, but didn't previously have anything for hormone therapy. I know more hospitals are now looking at running hormone therapy classes (or were, before coronavirus).

User

Posted 05 Apr 2020 at 14:55

How are you both coping with everything? Yes, I certainly no what you mean on the telling you & cheerio!

My OH had his diagnosis before all of this, at the end of Feb. Our bums had barely touched the seats when the Dr blurted it out. I appreciate he assumed we were anxious and would want to know “sooner rather than later” but still.

The next Consultant did go through other treatment options, and side effects after that. I’m pleased the forum has helped. Though it can be quite daunting too.

Take care.

Mel

User

Posted 05 Apr 2020 at 15:36

Going into an appointment expecting to discuss 1 enlarged lymph node ( as per a letter sent previously from oncologist to GP and copied to us ) and then hearing that actually there were 20 showing cancer was like being hit by a train going at full speed. I asked the oncologist a question he didn't even look at me to answer but addressed his answer to my partner.

When we left the consulting room we were in shock and it was really traumatising we went for a coffee whilst we waited for his prescription and I just remember sitting there not having a clue what to say to my partner. Luckily for us, my partner had an appointment the day after with the urologist for a 12-month check-up on surgery he had had last year for a stricture, the urologist was absolutely brilliant he sat on the bed with partner and answered all our questions with no feeling that either he or us were pushed for time.

Some days you just have to create your own sunshine......

User

Posted 05 Apr 2020 at 17:16

Hi Mel

my husband Tim was diagnosed beginning of March at present on HT no op till August September worrying times due to this virus, and not much feedback either just awaiting an appointment for qa Portsmouth just wish virus would go away

take care

Tracey

User

Posted 06 Apr 2020 at 20:54

Hi Carl, thank you for your private message which I'm still unable to answer privately, I regret. I spoke to my consultant today; he explained that my Gleason score is key. At 4+3=7 it's OK to wait a while, say 3 months. I am on the borderline of needing to start taking the antiandrogen, Bicalutamide. There has, evidently, been some recent guidance from the EU about the da Vinci robot's aerosol effect. Apparently it occurs when the patient is deflated. But my consultant believes if you deflate carefully and slowly there is no such effect. The length of delay before RARP operations re-commence is anyone's guess, but I believe there will be at least a 3 month delay, meaning July or August.

User

Posted 02 May 2020 at 10:20

Hi The1974, how are things a few weeks on?

OH has had pre-op now but no confirmed date. A bag is packed, just in case of a call at short notice. Not as joyous as the usual scenario in which you have a bag packed waiting for an expected but non predictable trip to hospital! Relieved that things are obviously being done though.

Mel

User

Posted 02 May 2020 at 10:51

Hi Mel,

I hope you are well and keeping safe.

It was exactly 7 months yesterday when I had RP and recovery is going well.

I suppose the two main factors which we worry about are ED and Incontinence (which was the case for me).

Viagra now gives me an excellent erection and performs best an hour before sex. I believe it's best not to exceed 2 tablets in one week and works better on an empty stomach.

Unfortunately i'm still suffering from Incontinence and changing 2/3 light (tena 2) pads per day. It's fine when sitting but leaking when standing and on the move.

I'm doing PFE in the morning but failing to keep it up during the course of the day!

Jeff

User

Posted 02 May 2020 at 11:24

Good to hear that things are going well. Yes, they certainly are worries. I’m more worried about the impact of incontinence, as it has social implications for OH. Worried about the other as well but we’ll work through it.

From a family perspective, how are your children handling everything? They are the same age as ours.

Mel

User

Posted 02 May 2020 at 12:01

Looking at the forum I see incontinence varies from man to man, some men are dry instantly when the catheter is removed. I required man nappies/pants from day one as i had no control over my bladder, i gushed everytime i stood up and this continued for a few weeks.

After time i was able to hold my bladder and getting to the toilet, once again this takes time to achieve. It was very hard in the beginning because whilst travelling on the motorway i almost needed to stop at each service station!

As months past i wore Depend pants but also inserted a pad which made changing/disposal much easier rather than having to take off trousers/jeans everytime.

I also tried Conveen sheaths for a few weeks but this doesn't help in training the bladder, it was really only useful for long trips on the road.

Ask your council for incontinence refuse bags otherwise your bin will be full in no time.

My girls have been fab throughout, very concerned at the beginning but now totally normal, to the point where they forgotten i had the op. Apart from the scars, the incontinence and ED i feel and look 100%.

User

Posted 03 May 2020 at 09:41

The 1974 Only time will tell on both counts really. It’s so individual. For every more negative experience there seems to be a more positive, and we’re so grateful to you all for sharing.
I’m glad your girls are ok too. It’s such a worry for them. We have one of each. Son will have PSA tests from 40 just in case.

Mel

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