Well I never

Well I never

User

Posted 05 Dec 2015 at 04:16

good to read your company Dr is giving you the support that has been lacking for a long time, look after yourself and hubby and enjoy

regards

nidge

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User

Posted 05 Dec 2015 at 09:36

Allison, so glad you wont have the stress of working, it amazes me how people manage to carry on and have a loved one they are caring for., I would have gone crazy if that was the case when Neil was ill. Hard to do, but hope you get some time for yourself, even if only a distraction. I know how this whole thing eats away at our physical and mental resources. Hope you have a bit more time to post here, I often think about you and how John is getting on. My love and thoughts with you,

Fiona. x

User

Posted 05 Dec 2015 at 10:00

Allison my lovely friend, your support was invaluable to me and now I hope I can give a fraction of that back.

I am so happy you can be off work ad infinitum. It is so what you need, seeing how well you were last time when you had the 6 month sabbatical.

Your John needs you and you need to be there for him and your family.

I have never said this on the forum but just one year of looking after Mick was an enormous strain on me mentally and physically. I think living with metastatic disease for 5 years must be devastating. I know how much you love John , he certainly does love you and I am sure he would never have made it this far without you and your family.

I will call next week to arrange a girlie lunch when I am in Swindon over Xmas. If John feels up to it we can all hit the pub for dinner one evening too.

Biggest love, hugs and respect

Xxxxxxxxxxxxxxxxxxxxxxx

User

Posted 05 Dec 2015 at 11:35

Hi Allison

I so so empathise with you.As yourself, I understand 5 years of dealing with a loved one with metastatic disease trully takes its toll. Constantly trying to keep the family organised and in good spirits. Maintaining a positive attitude when deep inside the negative thoughts battle to the forefront of our complex brains. And then throwing a stressful job into the equation where it's so difficult for colleagues to really appreciate our stressful situations.

I have had a recent change in work departnments and change of work colleagues. It quite unsettled me and i had to take some time off to recharge my batteries and discuss a plan of support. I have been very lucky that my new work colleagues are most understanding of our circumstances. I am still counting down 4 years till I can retire at age 55, though I too have the option of 6 months full sick pay if needed.

Allison I am so shocked at some of the comments you have had to deal with from your work. So glad to hear you have a good option to step away from work. Hope you can recoup some energies to enjoy valuable happy times with your family.

Take care.

Lesley xx

User

Posted 05 Dec 2015 at 11:59

Hi Allison
I'm sorry to hear that John has been in pain. Fingers and everything crossed that things get sorted
Really glad to hear you've had an understanding Dr who has resolved the work issue.

Take care
Bri x

User

Posted 05 Dec 2015 at 22:21

Hi, Alison,

Your words have struck such a cord with me, the stress and exhaustion of living with our sort of diagnosis is mentally ,physically and emotionally so draining.. Yes so grateful for the extra time but the cancer is always just over your shoulder. We can,t run from it and we can,t hide it is the extra member in our life.

So glad about your work situation people don,t realise how hard it is too be pulled in so many different directions you can now focus on John. Stay Strong.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 05 Dec 2015 at 23:28

Alison,

Not been on for a few days so just picking up your news. It feels like your workplace has woken up to your needs at long last and whatever problems you have had you can now put some distance from them. In the early stages of my journey I was bullied at work and did not have the strength to deal with it. Luckily, it was not planned, my centre was moved and I was able to move away from the problem. I was able, to forget that problem and move on and you can do that now, keep focused on that.

I feel for John too, having had a similar year myself with pain and then relief but pain just under the surface. As you may have read I am looking to retire next April and am already taking more rest. I know like you and John do that the future is always uncertain and it will make the journey constantly difficult and unpredictable. I am sure that being at home more will help me as it now does John with you at home. I know you will still have many ups and too many downs but your friends are all here to support you as your strength will be exactly what John needs in his camp.

Take care of yourself Alison, take care of John and let the disease do its worst, you will face this together and that it all you can do, but what a great combination!

User

Posted 10 Dec 2015 at 20:33

Evening all

Just an update from us. PSA remains low and stable. We continue on with Stillbestrill (that's from Sept 13!) at least for two months, which is our next oncology appointment. In the meantime they've booked a new bone scan to see what's happening as John has been having pain in the back ribs and left side. On that point, he also had a kidney scan today and they said right away that he needs a stent, his flow is very poor and the prostate is clearly blocking the ureter. We aren't sure when that will happen. But it can't come soon enough. We've always thought the left side pain was his kidney and feel relieved that the stent will relieve some of the worst and most annoying symptoms (at least I hope it will, I've no experience of this). I must admit the horrible period before an oncology appointment has been getting me wound up recently, and now I'm not looking over my shoulder at work tasks, I feel I may be able to cope better, who knows though!

The Dexa scan he had a few weeks ago has revealed some significant osteoporosis, especially in the legs and hips, and they are working out how to deal with it, possible a weekly biphosphonate, calcium and Vit D supplements we think.

So all in all a good report, much better than we thought, though the doctor did say the March RT is probably still doing its job. I do believe I married a walking miracle.

Having said all that I did read in Keith Cass's link to a new Site for advanced PCA sufferers that some G10s do live for 10 years or more and there were some things in the report that were consistent with John's diagnosis. Low PSA on diagnosis (25), few mets (5 or 6), little pain (this has generally applied to John). So he's now been given a challenge by me, he's done well for 5 years, here's to the next 5.

Love to you all, I can't tell you how much your support means to me,

Allison

User

Posted 10 Dec 2015 at 21:53

Great news and still on the same regime, exactly what the doctor ordered (and hope they do the same for me in two weeks time) John,s review gives so much hope to people like me with such a similar prognosis. Let,s hope the pain can be eased and you can enjoy a wonderfully relaxing Christmas together.

User

Posted 10 Dec 2015 at 22:22

Top banana Allison here's to another 5 years at least xxx

User

Posted 10 Dec 2015 at 22:29

Oh Allison, I can't tell you how relieved I am for you both. Here's to the next 5 years, indeed xxxx

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

User

Posted 10 Dec 2015 at 22:29

Hi Allison,

Neil had to have stents for each kidney due to the disease affecting the ureters. The main reason for this was, in his case, to prevent kidney failiure. At one of the meetings I had with hospital managers, one of the urologists said they had recently evaluated some research in the South west which concluded that if stents were needed, having one inserted was as effective as two, and saved the trauma of both ureters being fitted with the stents. It is usually a fairly minor procedure, but they do need to be fitted properly and checked as they can come out through the penis as happened to Neil. Also, depending on what type of stent, some are only temporary, I think up to six months before they need replacing so the situation needs monitoring and a plan for the longer term discussed. I think there are also permanent stents which can stay in indefinately, so all considerations to find out from your urologist. Hopefully they will do the procedure sooner rather than later for John,

Best wishes, Fiona x

User

Posted 11 Dec 2015 at 06:45

Dear Allison,

Just to say how relieved I was to read your latest post.
Fingers crossed that the stent(s) work for your John.

I can barely imagine what it must be like living as you both have for the last 5 years.

I hope this latest news gives you and the love of your life a bit of a boost for Christmas.

Best wishes
Sandra

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

User

Posted 11 Dec 2015 at 18:06

Hi Allison,

So happy to read your positive post. Relieved to see that you can continue stilbestrol and only a minor operation of having a sent fitted can help alleviate some of jons pains- hope you haven't got to wait too long for that to happen.

Have a wonderful xmas with your trully beloved walking miracle.

We've just had next lot of scans today, to be reviewed beginning of Jan. Fingers crossed I'm married to a walking miracle also!

Love Lesley xx

User

Posted 31 Dec 2015 at 15:04

Hi Devonmaid,
I see from FB that there is a problem and J is in hospital - I just wanted to let you know I am thinking of you and all the family xxx

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

User

Posted 01 Jan 2016 at 17:23

Hello all

Finally I have time to update on the events of the last couple of days. Back in early December John's kidney was scanned and it was noted that there were some issues and that the bladder was retaining 370mls of water, that's a fair bit as most people need to empty at 400ml. We received a letter (well a copy of the letter to the GP) saying that he needed to stop anticolergenic medicines at once. No one actually told us of course, so we checked and that knocked out, Bettmiga, Solefenicin and Tamsulsin. John would be called for a cytoscopy but no date given and a routine priority given. After a few days I got a bit mad about this and rang the specialist nurse (by this time John is getting up every 15-20 minutes, day and night). Nurse spoke to the consultant and he said, well let's not bother with the cytoscopy and then possibly do a TURP later, let's just get him in and prepare him for both bit in one procedure. So xmas came and went and John looked awful, lack of sleep being a major issue, but his colour was worrying too. Nothing from the hospital, so I rang again, well the appointment would be end of Jan, early Feb I was told. I was by now frantic and decided that a private consultation would be required. Of course, John didn't want a fuss but I decided he had to see his GP and lo and behold a scan revealed retention of by now at least 1 litre. 3 attempts at inserting a catheter failed at a local clinic, so we were sent to the hospital for them to do it. 6 hours later, 3 more attempts (blood everywhere by now) and umpteen bloody doctors later, they decide to admit him so nil by mouth, had nothing to eat since a tiny lunch and virtually nothing to drink. Gets admitted and nothing gets done, he has a sleepless night (you can imagine). We have been told about ten times that they need to do a surgical intervention and this would require a general anaesthetic. The following afternoon a registrar comes along and says he's taking John down for a local procedure to insert a catheter. I finally flipped. Being furious at the lack of attention and treatment and communication, held in momentarily but I let him go down and had a melt down in the ward. I was so furious at the now 7 attempts to stick a tube up the urethra, where there was so clearly a blockage and they had done a significant amount of damage with their arrogant attempts to avoid surgery. Never mind the agony of a still full bladder.

On return they had tried to put a camera up there but without success, really? There's a surprise. So did a supra pubic catheter. They released 3 litres of urine. I had a major rant at the consultant for the fact that this should have been dealt with weeks ago and the horrendous suffering they had inflicted on John over the last two days. His bag filled up another three times in the next couple of hours, I seriously dread to think of the pain he had been in.

Anyway, he's home now (after waiting 5 hours for meds that never came) and we are now living with the consequences. Last night the bag folded and did not fill, so backed up and it ended up with John on the floor as it emptied and it was full of blood.

I could say more, but I think this has got this partly off my chest. Let's just say I have always been a huge supporter of the NHS but right now I can assure you, the inefficiencies and downright cruelty I have seen over the last few days have made me despair.

Sorry for the massive post and undoubted typos.

Lots of love

Devonmaid

Edited by member 01 Jan 2016 at 17:25 | Reason: Not specified

User

Posted 01 Jan 2016 at 18:08

Allison

you are perfectly entitled to let off steam here, I know how worried you were when we met last week. I just wish I had realsied how bad things were, I would have stayed to give you some moral support.

To make John wait for such a long time when there was a known retention problem, moreover one that was worseining and causing so many unacceptbale issues. The discomfort, pain, sleepless nights for John and the worry and anxiety for you is just terrible.

What followed is simply not acceptable, I know you will take this forward but there is no rush, it can wait while you gather your thoughts together and whilst you get John more settled and stable. That has to be the first priority. In the quieter moments, jot down all the things that happened and what was said and done by whom. If you can recall names include them in your jottings. Try and create a timeline but Don't worry if it is all out of order, just commit it to paper whilst you can. If John is up to it ask for his input too.

If you want to pursue a complaint then write a short note to PALS to tell them you will be lodging an official complaint in the coming weeks.

Once you feel able to, then you can put a formal complaint together. Is there anyone in your medical team that can help you and provide you with some support in doing this?

I know you are probably in an emotional turmoil, fear, anxiety, anger and to some extent a feeling of being helpless. However you are one amazingly capable and resilient Lady. You have had so many things to deal with, including your situation with work, it is hardly surprising you need to get some of it off your chest.

So in the coming days, try and get John as comfortable as you can, if anything looks to be going wrong then call the specialist team, if they do not respond quickly call your Consultant. Your company have indicated that John should be covered on your private medical cover, so if necessary use that to speed reactions up.

I really feel for you Allison, seeing your Man so unwell and getting so little help is unbearable. If there is anything at all I can do to help please message me.

You are very much in my thoughts. Jackie has been asking after you every day and sends her and Alan's best wishes as well

xxxxx

User

Posted 01 Jan 2016 at 19:01

I'm so sorry that you've had to go all through this Allison.

I hope your John can get a bit more comfortable and get some rest. You too.

What a joke the NHS in all this, and not a funny one at that.

Best wishes

Sandra

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

User

Posted 01 Jan 2016 at 19:50

Devonmaid

That is quite a horror story and of course totally unacceptable on the part of the NHS.

I had a SPC fitted within minutes of going into retention during an operation. The medical staff were in what I would describe as a controlled panic.

Bit confused about the folded bag. I had a normal leg bag and at night attached a night bag to the leg bag. I then attached the night bag pipe to a catheter strap around my ankle to save anything getting pulled. I also wore pyjama bottoms to keep it all in place.

Hope things start to improve soon.

Thanks Chris

User

Posted 01 Jan 2016 at 20:01

I'm so sorry you have both been through all this over christmas. Chris's story ( above ) made me wince , but this takes the biscuit. Your man is made of steel and he couldn't hope for better than you by his side. I so hope things improve quickly.
Chris

User

Posted 01 Jan 2016 at 20:48

Allison,

I am so angry to read this. Neil and I went through numerous similar scenarios with our local urology service, I had absolutely no trust in them at all, you get to dread the prospect of a loved one needing admission, it simply shouldnt be like that. Do message me if there is anything at all I can do but in the meantime, as ever, I send my love,

Fiona. xx

User

Posted 01 Jan 2016 at 21:30

Dear Alison and John,

My heart goes out to you both Mo has given some brilliant advice but it should not happen in this day and and age but we hear it so often when the system fails and patients are treated so badly. I have witnessed it my self on many occasions.

I hope that John is more comfortable and you can rest . Do what you need to do but get your strength back first.

Lots of love

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 01 Jan 2016 at 21:45

The night bag was on the floor in a bucket but it folded in on itself. We will leave it in a washing up type bowl tonight and hope that it stays put. John does have leg bags but is using the flip and tap method in the day, the idea is to keep his options open if the consultant thinks there's any chance of a reversal in the future. John doesn't want to keep the bag in the bed at the moment, it's probably a matter of confidence. The future will depend on a review of what's going on down there. Does anyone know how long the bleeding goes on? We have so little information given that it's the bank holiday. I have to ring the supply company tomorrow to get new supplies and it says they can give you a thing to hang the night bag up to save it collapsing or getting twisted.

Im hoping the district nurse comes and checks it all.

Feeling much calmer tonight as John is so much more comfortable, he's been through weeks and weeks of pain and suffering and hardly any sleep, so having the luxury of just lying in bed and resting is a wonderful thing.

Lots of love

Allison

User

Posted 01 Jan 2016 at 21:54

Dear God! All that and they didn't even give you a night stand!!!!

I was so angry for you this evening, I emailed David Cameron to express my disgust - didn't actually name you, obviously :-0

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

User

Posted 01 Jan 2016 at 22:10

Allison what a terrible time you and John have had. I do hope he is now, belatedly, getting some relief. One query I wondered whether they suggested self catherisation at all which would have helped to relieve the pressure. Thinking of you both!

User

Posted 01 Jan 2016 at 22:34

If he has a supra pubic catheter and the bladder, ureters, urethra, etc., have been traumatised by procedures, various degrees of bleeding can be ongoing. Neil's urine was always dark, it just became the norm. He coped well with managing the leg bags and the night bag which rested in a bucket at the side of the bed so any leakage would be contained. Found this much better than a night stand which we eventually got. I used to empty the bags into a urine bottle then into the toilet then disinfect the whole lot with wipes. The other thing was hygiene round the wound, keeping it clean and preventing infection. Definately get the district nurse involved, ours were very good and we needed to be on their radar in case of emergencies. They and the GP were best for getting catheter supplies except the hospital sent a huge parcel of supplies, most totally useless, what a waste of NHS money. The other thing is to watch the whole thing doesnt block and retain urine which can happen. Most definately needs time to settle down, moving around can also cause bleeding at this stage. You are right, no one tells you anything. Hope you both get some well needed rest right now,

Fiona. xx

User

Posted 01 Jan 2016 at 22:56

I'm laughing right now, thank you Lyn, that made me feel much better. The whole thing is unbelievable and I feel my poor man has suffered abuse just to save them doing a small but very necessary operation. Lord knows how much it all cost in the end.

Fiona, thank you so much for your information, there is blood coming down the penis, which must have a small outlet which John has been using for the last number of weeks to pee through. I have the bleach and the disinfectant on hand for every visit. I thought it might be good to have a small bath tomorrow so that he can get clean in the under carriage area, it might help. He says he keeps feeling like he needs to go but the system is working fine. There's a lot of debris coming out too.

Paul, he wouldn't be able to self catheterise as it's impossible to get anything up the urethra, despite the numerous and cruel attempts made by what felt like a legion of doctors. We need to understand what the blockage is (it's the tumour without a doubt) and if it can be dealt with by a TURP. But that's a number of weeks away,at the moment we are simply happy to have a break from all the horrors of the last few weeks.

Lots of love

Allison xxx

User

Posted 01 Jan 2016 at 23:14

Devonmaid

Hard to say how long the bleeding will go on for as me and your OH have had different things done. Mine did stop bleeding within a couple of days. I was initially using the tap on the catheter for about 4 days I was then told to urinate normally through the penis. I did manage to start again but had to revert back to the catheter and bag due to the damage in the urethra.

If you have got an old wire coat hanger and a pair of pliers you can improvise and make a bag holder. I used to put the stand in a washing up bowl.

As Fiona says keep the wound clean, I got a lecture about not using medicated wipes, after a few days I was quite happy to clean round the area in the shower with unscented soap.

Even some of the RP guys at our hospital were not being given bag stands.

Pleased to hear your are feeling better.

Thanks Chris

Edited by member 01 Jan 2016 at 23:15 | Reason: Not specified

User

Posted 02 Jan 2016 at 01:11

Hi Allison,

I'm so sorry to hear of the terrible time John has been through in recent weeks and how horrible things have been for you too.

It's so hard to be with someone you love, when they are suffering so much, and not being able to take their pain away. When the ones who should be helping (the NHS) are not doing their job you have a perfect right to get angry.

I think the suggestion that you should make an official complaint is a good idea.

I hope things improve in the coming weeks, I'll thinking of you both.

Steve xx

User

Posted 02 Jan 2016 at 02:53

Hi Allison,

You sometimes find patients writing to newspapers extolling the treatment they have received on the NHS. Well good luck to them, this is how it should be. However, there are far too many cases (and one is one too many) where as John found, the treatment, attitude and care is deplorable. I think many of us would be prepared to pay a tax that was ring fenced for the NHS to substantially improve the service. It would take time to train all the additional medical staff, update systems and equipment and where necessary change attitudes but needs the will to implement. Instead of this, the threatened strike by junior doctors is still on for 13th Jan as I understand it, - could lead to more cancellations and delays - wrong direction.

Hope John is properly sorted soon.

Barry

User

Posted 02 Jan 2016 at 05:19

hi allison
made me cringe when I read about how the treatment didnt go, heres hoping it improves for you both

regards
nidge

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User

Posted 02 Jan 2016 at 09:51

Hi Alison
It's so disheartening to read that this is still happening in this day and age. John should not have had to suffer like that. I think a complaint does need to be made in good time so systems/procedures can be changed.

I have a bladder neck stenosis (restricted opening) that they could not get the camera through so unlikely they will get a catheter in. The consultant I saw said to me if I were to go into.retention I wasn't to let any tom, dick or Harry near me with a cathetar (not sure tom, dick or Harry would listen to me like)...He said that a urologist would be able to draw the urine off with a syringe until.appropriate intervention could take place. I'm obviously hoping none of this has to take place. My point being why oh why could they not do this for John....

Actually that reminds me the consultant was supposed to send a follow up.appointment about a year ago....its bloody maddening isn't it

Take care and really hope John gets this all sorted ASAP

Bri x

User

Posted 02 Jan 2016 at 09:54

Hi Allison,

I can believe what you John has gone through with poor attempts by nurses/doctors at trying to push a catheter up a mans penis when he was in retention, they need to have a size 16 french shoved up their uretha they would soon be asking for some sort of painkillers

A chap called David [flyboy] who has not posted for a while has got a superpubic catheter fitted he might be on to ask advice from, I know he has had some bloody affairs with his,

Best wishs to you and John

Regards Barry

Edited by member 02 Jan 2016 at 10:06 | Reason: Not specified

User

Posted 02 Jan 2016 at 12:50

Hi Allison

It's normal to have blood and some urine still voiding from the penis even after a supra pubic catheter. The other thing to watch for is fluid/urine coming from the actual wound, combined with not much flow in the catheter and increased abdominal discomfort. This can be a sign of a blockage and needs either a district nurse to flush the catheter to get rid of the blockage or if they can't/won't do this, a trip to A and E for medical intervention. Fingers crossed none of this will happen but it all did to us so any info I can pass on to you may hopefully keep you vigilant though no doubt you are anyway !

Love, Fiona. x

User

Posted 02 Jan 2016 at 23:41

Nothing short of appalling, Alison. I truly hope you get answers. More importantly, I hope John gets the treatment he needs from now on.

Paul

Stay Calm And Carry On.

User

Posted 03 Jan 2016 at 01:04

What an awful situation for you both of you. I don't blame you for having a rant. I'm sure they will have caused quite a bit of trauma with all the attempts to catheterise which is probably the cause of at least some of the bleeding. Hope things are settling down now.

Rosy

User

Posted 03 Jan 2016 at 14:42

Thank you all for your advice and support. The District Nurse finally came today after much prodding from me. However, that said, she was fantastic, really caring and kind. The wound is healing really well and she stuck a clear film over the catheter to keep it clean and flat (oh the dread of pulling it out by accident). She said the blood will probably continue for up to two weeks and tends to get worse the more you move around, but it's nothing to worry about yet and she explained how the blood and urine don't really mix well and you can see it separate out. She left us a numbing gel for the excruciating pain in the penis on the catheter being emptied and plenty of gauze for applying it. John still looks a weird colour but he has been through an awful ordeal and I can't help wondering what toxins have been reabsorbed. She also said that medics are trained not to "poke" at a tumour as there is danger there and this is my current major concern. I have no idea if they have damaged the tumour with their actions, I sincerely hope not.

Anyway, thank goodness the GP surgery is open tomorrow, I feel safer with our GP. We will go back and see the urologist on Jan 20th, privately, I might add as there was no planned follow up from the hospital. Thank goodness for my Company's private medical health scheme.

Lots of love

Allison xx

User

Posted 03 Jan 2016 at 14:51

After all the disappointment of not getting VR, it seems there was a greater force at play - someone somewhere knew you would need that private health cover :-(

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

User

Posted 03 Jan 2016 at 19:34

Devonmaid

I accidentally caught my SPC when showering, it was quite painful but the balloon does secure them quite well. Not sure if you were given spare catheter, i was given a spare one and told if it comes out get the new one fitted within two hours. The hole in the bladder seals itself very quickly. On removal of mine the balloon was deflated the nurse pulled out the SPC then pressed on the wound for about a minute and that it was done, three samples and on the way home.

Flyboy changes his own.

Thanks Chris

User

Posted 05 Jan 2016 at 20:06

The thought of changing the actual catheter gives me the creeps, I think we will leave that to the practice nurse. I had an interesting chat with a doctor today who told me that because John's retention had come on slowly (it's usually sudden) and his bladder had stretched over time he wouldn't have felt as much pain as if it had happened suddenly, hence not yelling at the medics (as well as being ex military and having a very stoic attitude). Also as he was expelling a tiny bit of water they would not have regarded it as an emergency. Hmm, I see that, but the specialist nurse has said today that they are investigating, without us complainiing, anyway, as they feel this shouldn't have happened. Anyway, a daily improvement is happening, he can only get out of bed for a few minutes a day yet (he's still yellow from the toxic build up of urea) but I do think he's getting better.

Yes Lyn, thank goodness I'm still employed!

Lots of love

Allison

User

Posted 05 Jan 2016 at 22:14

Originally Posted by: Online Community Member

Yes Lyn, thank goodness I'm still employed!

Lots of love
Allison

Never thought we would say that, eh??? Stay strong lovely xxx

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

User

Posted 05 Jan 2016 at 22:26

Hi Alison,

My Ex hubby was Ex military so I so understand where you are coming from re the stoical comment . So glad that John is feeling more comfortable . Keep your chin up .

Lots of love as always.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 05 Jan 2016 at 23:02

Allison

Unlike a urethral catheter a SPC is okay for about six weeks before changing and " normally" the first change is done at a hospital not by a district nurse.

Thanks Chris

User

Posted 05 Jan 2016 at 23:05

Each little step helps, hope he continues improving. Thinking of you both!

User

Posted 20 Jan 2016 at 23:03

Good evening my friends

Just an update, we saw the consultant this evening (private of course). John is booked in for a TURP on 2nd Feb. The consultant feels he has three problems, the prostate enlargement due to the cancer (hence the TURP), a damage kidney (possibly needing removal or a stent if still working to some extent, but that would be for a later date) and a need for a circumcision (possibly something to do with repeated, untreated infections. Anyway, the hope is that the TURP and circumcision will allow normal emptying and the supra pubic catheter may be removed. Obviously subject to success in the op but he feels that worth doing for the potential benefits. John is still very weak, though recovering well and not so yellow now the build up of toxins re being excreted. He is a tad concerned but whilst the supra Pubic is great (after what he's been through), we can't deny that it has many drawbacks, not least catching the damn thing in your clothes.

So, hopefully this operation will ultimately see John back to reasonable health. If that does work out this way then I'm going to see if I can manage to go back to work, albeit at a reduced workload. As wonderful as it is to be free of work stress, I would rather leave the consequences of long term sick leave until I really need it.

So oncology on Feb 8th, results of the latest scans and the possibility of a better year ahead. Phew,

Love to everyone

Allison xxx

User

Posted 21 Jan 2016 at 00:42

Allison

It cheers me to read that things are happening at a more acceptable pace, John is geeting the surgical treatment he needs and hopefully feeling much better to boot.

Down in Swindon this weekend if you fancy a coffee at M&S.

As for the return to work, a sort of plan B, all well and good for now as long as you can revert to plan A at any time if you need to.

big hugs

xxx

User

Posted 21 Jan 2016 at 09:14

I don't know whether to be happy or worried for you and I guess I am just picking up your mixed feelings. Will the circumcision be done at the same time as the TURP to avoid two lots of GA? The TURP will hopefully bring some immediate relief and eventually some normality back.

Returning to work is why I worry for you - but with reduced hours or flexible working it might be really good for you to maintain some outside activity .... and to keep the private health cover ticking along. But oh, to be at work and missing time with baby D - that will be tough :-(

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

User

Posted 21 Jan 2016 at 22:27

Little bit like lyn I am picking up mixed vibes from you Alison. Stay at home versus back to work only you can make that call I so wish as wives iwe didn't have to face these decisions but sometimes we have to. Whatever way you go remember to make time for yourself.

Thinking of you and John as always

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 22 Jan 2016 at 09:28

Ah yes I do have very mixed feelings about work, I've had to complete a horrible insurance form (a bit like a PIP) asking whether I'm able to do the ironing etc. It has made me question my feelings about work. I'm doing nothing yet except complete the forms, I'll speak to the company doctor about what's possible before I do anything at all. I spoke to my own GP and told him I feel very conflicted about it all and his view was that work would be a respite. I may just go with the flow, I am a great believer in fate and tend to let things pan out how they may. It was nice to feel as though I could potentially face working again but that's not for now, now it's about getting John better (it's a slow process even now) and then getting him over this operation. He's having doubts about whether he's well enough to face it to be honest.

One thing I have been pondering on is what consultants hear when they talk to you.

For instance, John has had a horrible pain in his side (it's the kidney for sure) for a long time. We mentioned it again and what went down in the notes was a mild pain.hmm. Secondly he wrote that John was feeling much better, well what he actually said was " I feel very weak".

They don't hear you do they?

Mo, let me know if your free at the weekend, a coffee would be nice xxx

User

Posted 22 Jan 2016 at 10:28

Alison
Just wanted to wish you and John mine and Elaine's best wishes for what's ahead. We both kind of believe in fate too -- everything has a habit of sorting itself out !! Thinking of you
Chris

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