Thanks for sharing your experiences . . .

[Veema]

Mo, we didn't get a Macmillan nurse until 2 weeks before Nige died...and then she was nigh on useless, hope yours is better.

My Gran always told me we were related to Patience Strong (my maiden name is Strong) until I pointed out to her that Patience Strong was her pen name only!

Keep trudging lovely...we're all still here for you.

Vx

[AndAde]

Hello Mo,

I can sympathise with you...I try to support Adrian with his 'its not happening' outlook, it can be very frustrating. I think its the only way he can deal with it. I wish I could adopt a similar outlook, but its just not me. Keep drinking wine and tell the bunnies to go stuff themselves xx

Thinking of you xx

[AndAde]

I also have a step son who never rings his father unless he wants something!!!

[sandraW]

Mo, your letting off steam is just as interesting as when you doing your usual posting, please be sure we all love reading it, even though we do all feel for you.

I know what you mean about the complete denial, been there and done that, its certainly not easy. And as for having a day off from cancer, perhaps now the RT is finished, Peter will feel a bit better and while not up to 18 rounds perhaps things will get a bit more on an even keel and

he can get out and about a bit more and give you a bit of respite.

All you teddies and bags sound amazing, at least its stopped you from smoking, not sure about the gin though.

As for the step son I do think they find it hard to accept that they might loose a parent, I know both our sons struggled to come to terms with the fact, that they were loosing their Dad, kids tend to think us parents are indestructible.

Just be careful when kicking the furniture, I remember once banging a pan full of cold stew down very force ably, when in a strop one day, stew in you hair is not a good look I can assure you. please take care and I am sure the crafty thing will go very well, love sandrax xx

[Justamo]

You are a lovely bunch of people. Just when I feel like the wrath of God somebody says exactly the right thing and things click back into place again. Not a particularly good place, but it's at least recognisable.

Sandiemac, I'm absolutely with you about cancelling the diabetic check up and the eye clinic. It's just that My Patient is still travelling along the lines of " . . and when I get better . . . ", only in this instance it was "Not much point in recovering from cancer if I can't see, is there ?" He has macular degeneration and has to have injections into his eye every so often. He had one last week; immediately after being microwaved on high in the RT Department he trotted along to the Eye Clinic to get a needle jabbed in his eye. And the Diabetic Clinic is for his annual check for Retinopathy, which brings us back to "Not much point in recovering from cancer " etc.

In any case I like going to the Retinopathy Clinic. The Receptionist there is so spectacularly rude that I delight in being Terribly Polite to see what she does. The last time we went she was writing something very very important in a little book (not even joined up writing) and she completely ignored us until I said, brightly, and just like Joyce Grenfell, "Good afternoon". She ignored this and continued writing until she reached the full stop, and then said *Name ?* without even looking up. You'll be pleased to know that she looked quite disconcerted when we left and I said, charmingly, and without any irony, "Thank you SO much, you've been SO helpful".

SandraW, I can't not bang down a saucepan of cold stew because we don't do stew; would it be OK if I didn't bang down a saucepan of cold rice instead ? Not pudding, the other sort of rice. Quickly, it's love to hear that Dad's dog is doing well; my cousin and her partner had four dogs, but Joan's own dog is still looking for her I'm afraid.

You know that feeling when you hear a voice saying, "Don't worry, I'll do it for you", and then you look around and realise that it's you that's said it ? Because My Patient felt well enough to go out for a while this afternoon all by himself, I spent the time making an outfit for an Indian Squaw to wear. A friend goes ballroom dancing and they have an annual fancy dress evening. Her husband is determined to be a cowboy, and June doesn't feel like doing an Annie Oakley number, so she's going as the opposition: a Native American. So I've been hacking lumps out of a charity shop suedette skirt. Yes, rustling up a Squaw's outfit does sound quite simple, but the reality is that the fabric is horrible to work with and my inspired idea of embroidering it with wool and feathers is all very well until the cat wants to play with the feathers . . . . But it makes a nice change from stuffing bunnies. (Please keep up at the back).

Must stop, I've descended into logorrhea. I've just asked Google how to spell that and it's offered me another word beginning with gonorr.... So I think we'll leave it there for now.

God Bless,

Mo

[Dandygal76]

One day at a time Mo and I am sure you will get the gonorr... I mean logorrea under control. In the meantime... perhaps a quiet word to reduce the clinics? x

[Justamo]

I'm completely with you on the clinics thing DG, but Peter actually wants to attend them. The eye clinic is for Macular Degeneration in one eye which is currently being held at bay with bi-monthly injections, and the Diabetic appointment is for his annual Diabetic Retinopathy check. I think that checking an 85 year-old for retinopathy is pretty stupid too, but I imagine it ticks a vital box on somebody's spreadsheet. Mine not to reason why . . . .

Peter can't see the point is struggling to 'get better' (his words, not mine) from PC if he can't see to hit a golf ball. Attending these clinics is routine for him and if he wants to attend I'll go along with it. I find it very frustrating to form an orderly queue in these ghastly places when there are so many other things that we could be doing, but if he wants to be treated like a pin cushion so be it.

He really does know that his PC is terminal, but concentrating on other things helps him deal with it. Not my way at all, but we'll do his his way for now. Sometimes I want to bang my head on the wall with all these silly time-wasting and non-productive appointments, and sometimes I want to bang his head on the wall too, but I'll go along with it all for now.

I've finished the Native American costume, now I'm going to make a few more butcher aprons. My Patient is doing a jigsaw (without his glasses - he likes to live on the edge) and Boris is asleep in one of his sleeping bags somewhere. I think he may be hibernating. Boris, not Peter.

Take care folks,

Love Mo

[Justamo]

Later . . . .

I left Boris and My Patient looking after each other while I went to Vigil Mass, and have come home to find them both fast asleep, and there are little bits of chewed up jigsaw puzzle all over the floor. It was a 400 piece puzzle, and I've only found 382 bits so far . . . . .

It was the cat wot did it.

M

[Dandygal76]

I reckon it was Peter out of frustration without his glasses. I haven't done a puzzle for years and might just go and treat myself actually now you have put the thought in my head. I hope Peter is well today and that the weather is not as dire as it has been here this weekend. Definitely not good golfing weather - even the dog refused to go for a walk this morning. He is definitely on par with Boris with that stubbornness gene. Raining... not walking... cold... not waking... too windy... not walking... mum cooking dinner... not walking... ya de ya. Never known a dog like it. When we got him he was not even allowed on the sofa, upstairs etc etc. Now the blinking things sleeps under the duvet cover with me and rules the house. They chip away at you and the kids just let him run riot when I am not here so I gave up. x

[Justamo]

Well, here we go again.

Feel good. Go out. Enjoy.

Come home. Feel exhausted.

Stay in bed all next day.

Repeat.

It was the Annual Prize Giving at the Golf Club last night. I haven't been to it for years, because there's nothing more boring than watching golfers get presented with assorted lumps of metal (hope they've all got big mantelpieces) and listening to repetitive speeches. Even when one's husband is responsible for one of the speeches. He hadn't actually won anything, he had to present some prizes, so he was allowed to be even more boring than the ones going off with the loot. I went with him because he's been a bit off-colour all week, and in my role as Carer/Nurse/Minder/Chauffeur I graciously accompanied him because he said he would buy me a meal afterwards.

So we got ponced up a bit, I found the missing earring so I was even a bit glittery, and off we went. Peter said his bit, the Lady Captain presented the prizes, (I was very impressed with her - she even kissed the ugly ones), and after the smug recipients had all said exactly the same things, more or less in the same order, and we had clapped them, it was all over by 8.30pm.

And by 8.31pm My Patient was cold, sweating and distinctly unwell. I stuffed a couple of toffees into his mouth and rushed him to the car for a quick blood check. 2.9 TWO POINT NINE. That's a record. I don't understand it, because I checked his blood before we came out at 7pm and it was 6-ish or so. It took 6 sugar lumps, a small can of Coke, a glucose sweet and half a bag of crisps before his blood came up a bit and he stopped sweating, so we abandoned the idea of candlelit dining and settled on picking up a Kentucky Fried Something on the way home. When we got to Kentucky there was a queue, so I just drove straight home and My Patient put himself smartly to bed. Once he'd had a hot drink he felt a bit better so we polished off a ham sandwich and Boris had to make do with bits of ham instead of half a Kentucky Fried Something with the breadcrumbs washed off.

Part of the off-colour stuff earlier in the week was a day when I would have sworn that he was tipsy, having the drink taken, as we used to say in Ireland. He hadn't had any alcohol, but he was acting and sounding a bit tiddly, and it was all rather alarming. It lasted all day, even when the MacMillan nurse visited, and it made me feel a bit panicky. He was absolutely fine the next day, and even referred to being "a bit silly" the previous day, and it's not been repeated. Otherwise he's had a quiet week; he went out with his buddy for coffee - Buddy can't drive because now that he's in remission from his cancer he's had an operation on his shoulder so he's got his arm in a sling for 6 weeks. His consumption of painkillers has risen a bit, and we are due to see his GP next week for a routine chat.

I've managed two aquarobic classes and two swims this week. Quite enjoyable, because you will all understand that you can get a bit isolated at these times, so talking nonsense with the girls was nice. I've continued the sewing, but have had a blow about the Crafte Fayre. The organiser e-mailed and asked me for a copy of my Public Liability Insurance Certificate. I do not consider myself Publicly Liable for anything, so I haven't got one, so my Guest Appearance at the Crafte Fayre will not happen. A bit like Adele and Beyonce, I shall have to disappoint my public due to circumstances beyond my control. So I've booked a table at an indoor car boot sale instead because I shall have to get rid of all this stuff somehow. And I think the Crafte Fayre organisers may have shot themselves in both feet because surely none of the Lavatory Roll Cover crocheters or Matinee Jacket knitters will have Public Liability insurance ?

And my hairdresser has offered me an empty window to display stuff for sale so it's not the drama it may have been.

I hope you are all OK-ish. Clocks back tonight.

Try explaining that to a cat when he's demanding breakfast at normal hungry-time.

Love, Mo

[Sandiemac]

What a shame you missed your meal out. Very surprising about that quick drop in the blood sugar. Did you mention it to the Macmillan nurse? And did s/he notice the tiddly thing? I know you are soldiering on looking after "your patient" but do ask for advice/backup from Macmillan.

YOU ARE NOT ALONE. Good to know you are seeing the GP next week.

Very pleased to see you had some "me" time. You are dead right, it is isolating - just going out to do the essentials and then dashing back to check they are OK.

It's the Craft Fayre's loss. Stephen was an insurance broker for 50 years so I know about Public

Liability insurance. They are probably afraid someone will have left a needle in a piece of craft work or something! The nanny state again. I hope you sell every single thing!

Love, Sandie x

[Justamo]

Sandiemac, I don't think any of the Liable Public could be harmed by a needle, but the more sensitive among them may need counselling after being forced to look at crocheted lavatory roll covers in two slashing shades of pink and red . . . . .

[Marmalade]

Dearest Mo,

For reasons beyond me I have stopped being notified when you post and I am unreliable at checking. I am astounded about the Crafte Fayre and having done many many risk assessments and public events I feel that someone somewhere has misinterpreted the guidelines although anything which saves us from crocheted loo roll covers must be applauded. Such a shame for you though! If you can't shift the stock let me know, I know a group of ladies who would love to purchase one of your items and I can arrange distribution.

I'm glad that you and Peter are managing the odd social engagement. I am in awe of you that you manage to get to some of these social events, ditto hospital appointments, there came a time for us when we had to say if this or that isn't making things better or it's proving too exhausting then it is time to knock them on the head and conserve the energy for something we both like doing instead. I think we lose track of just how much our lives are consumed by this disease and at it can overwhelm us which is why your aquarobics, swimming and other ordinary things are so important.

I can't say it enough Mo, you are doing a top class job for Peter. I hope you tell yourself that sometimes...

Sorry that Boris had to make do with ham bits. I think warm chicken is every cats idea of heaven far more so than fish which my daughters cat is very so so about.

Love and hugs Mo, its always good to hear from you

M xx

[Justamo]

Where have all the flowers gone ? Gone to Facebook, every one. Or maybe not.

It’s been an moderately grim week. We saw the GP on Tuesday for a little catch-up. Mostly about golf. I’m glad it wasn’t Wednesday or Thursday because he would have taken My Patient away from me and shut him up in a high-security retirement home with searchlights and boundaries patrolled by big men with walkie-talkies and aggressive guard dogs.

Peter seems to be very drowsy and a bit confused and muddled. The ‘tipsy’ episode 10 days or so ago was because, I have now discovered, he took his slow-release medication twice one morning. I am tempted to confiscate all medication and dish it out at appropriate intervals, but I am loathe to do this because I think he should be responsible for his medication for as long as possible. Boris and I will have a meeting about it to see what we can do to tighten things up a bit. He spent Thursday, Friday and yesterday in bed, mostly sleeping (Peter, not Boris. Boris was in the cupboard). He complained of feeling very cold, but there was no evidence of rigor and his temperature was normal.

His appetite is poor, of course, and today’s cheese and ham toastie was rejected because I had ‘put too much salt on it’. I never salt Peter’s food. I have reduced the insulin dose to take account of his diminished food intake because we don’t need hypos along with dizziness and confusion.

The good news is that the pain seems to have decreased quite a lot. That was the whole point of the radiotherapy of course; the lovely Consultant (Getrost – Google it to see why) said she wanted to ‘put this tumour in a box and stop it from hurting you and spoiling your good days’.

Tomorrow Peter has an AGM to Chair and so he has got up today and is messing around with paperwork. He is not a paperwork person, whereas I am, and it drives me nearly nuts to watch him pick up the same bit of paper over and over again and then file it at random in any one of about 10 files, none of which is labelled and all of which contain more bits of paper which are probably photocopies of the bit of paper he lost in the first place. And of course all of these bits of paper can easily be printed off from my PC where they are readily accessible. But he likes bits of paper, and I suppose it’s harmless enough. But very frustrating to watch.

So I hope that tomorrow we don’t have a dizzy and confused day or I will have to drive him to the perishing meeting and attend it too. And I’m not a member. I’ll phone the MacMillan nurse tomorrow when I get a chance just to see if any of the medication he’s taking can cause the confusion and tiredness. We see Dr Feelgood in December.

Meantime, Boris has shut himself in the kitchen cupboard and I don’t know why. He seems a bit under the weather; didn’t want his breakfast, didn’t want mine either, and he’s quite partial to yoghurt. Possibly there’s a visit to the Vet on the cards and I’m praying it isn’t toothache. And I got the result of my MRI scan – evidence of further insufficiency fractures, but no treatment effective available. They used to inject a kind of cement to fill up the gaps, but don’t do that anymore. So put up and shut up. And get on with it.

Hope the rest of you on Planet PC are OK ?

Love, Mo

[sandraW]

Mo I am sure you must feel quite lonely on here at the moment, I wish it was because no one was suffering from PC anymore but I know that's not true.

I do check every day to read the posts, ad I am keeping up to date with you and Peter and of course Boris's antics too, sorry he is under the weather, you have enough to worry about with Peter without and more problems.

I have a bad knee, evidently its "shot" I am waiting to see an orthopaedic consultant about having it replaced, but I know they are going to tell me I am morbidly obese and I can't have it done. But I did go for a steroid/pain killer injection on Friday I can't believe how much it has helped, I am now sleeping so much better and feel so much brighter already. My youngest son, who is living with me at the moment with his family, is busy telling me that he was so right insisting I go to see the GP, and I might have to agree with him. The doctor that did the injection was so lovely I felt I had gone back in time 30 - 40 years to the good old days when Drs really cared about their patients and treated them as real people.

Poor Peter I hope he has a good day tomorrow and can get to chair his AGM, the blood sugars are a real pain in the butt, and it must be really difficult to keep them under control, when Peter's appetite is so up and down. I understand how you feel about him being in charge of his meds, but when he is feeling rotten its so easy to get mixed up, so perhaps it might be better if you did take over, just a thought. Glad to hear the pain is reduced any thing that can help is a godsend.

You sound a bit down my love, why wouldn't you be, its certainly not the happiest of times

wondering what the next thing this shitty disease is going to throw at you, I just hope you get some good days soon love sandrax xx

[Veema]

Hey Mo...two things...firstly the meds...get him one of those pill organiser boxes and dish him out his quota for each day. I got one where you could take out each day on its own, so he can carry it with him...it's still giving him control, but giving you a bit too. Secondly the confusion and tiredness could be his sodium levels, might be worth getting them checked.

Loads of love

Vx

[Quickasyoucan]

Mo sending all good thoughts and hope for a few 'diamond days' amongst the not so good ones. Hope Mr Boris is also on the improve soon. X

[WifeampMum]

Dearest Mo

Love and good wishes are on their way from one purple flower to another. Although I don’t post often these days (PC forum burnout) I always read your updates and think how lucky Peter is to have you by his side.

Hoping very much that this week is better than the last

W&M xxx

[Justamo]

WaM, Quickly, Veema, Sandra and Marmalade. Thanks for your support. I did get a pill-box organiser thingy but it was treated with contempt, as was I for even thinking about suggesting it. It's the Neanderthal Syndrome again - pill box organisers aren't for Real Men. No, Real Men usually have some downtrodden and earnest little woman behind them remembering things on their behalf. And meekly accepting the blame when they get forgotten. But even the meekest worm turns eventually and before long I shall confiscate the pharmacy and lock it up and dish it out as necessary. That'll learn him.

THE FOLLOWING ITEM IS NOT FAKE NEWS.

BOTH My Patients are comfortable. One of them is sitting just outside my study door waiting for me to tuck him up in his sleeping bag, and the other one has been flat out in bed with his telly and his toffees for two hours, with the former item blasting out at an unacceptable volume, and the latter congealing on his pillow.

The furrier of the two Patients has been to the Vet and had EIGHT teeth out. Yes, 8. I feel like a bad mother and am wracked with guilt. Boris has always been touchy about his mouth and has never let me clean his teeth, although he does hold his paws out nicely for me to clip his claws. Unfortunately, attention to his claws doesn't help his teeth, and the Vet pulled out 4 bad ones and 4 which were likely to go bad within the next few months. I am absolutely mortified and despite being assured that Some Cats Get Plaque I feel awful about it. He usually has crunchy food but this evening he had a dish of mashed up tuna. That's a treat reserved for birthdays and the birth of a Royal baby or something equally important, but I felt that the occasion warranted it this evening.

The Other Patient is snoring his head off and I'm about to collapse into the sheets myself. I am worn out with the pair of them.

Tomorrow is another day.

WaM, speaking as a purple flower, do you go out in your slippers too, or am I thinking of the wrong poem ? (When I am old I shall wear purple . . . .)

Enough.

Love, Mo

[WifeampMum]

Thank you Mo for introducing me to a new poem. No purple slippers in the rain yet but I may have let slip the odd swear word on the street. On Planet PC it’s sometimes hard not to.

W&M xx

[Justamo]

Peter was whizzed into hospital yesterday. I'll post more fully later, but he's quite poorly and has several blood clots in his lungs which explains a lot of what's happened this week.

More later

Mo

[Quickasyoucan]

Sending you al my thoughts and good wishes xx

[Didge]

Mo I am so sorry to hear that. Sending you lots of love

[Justamo]

You really are the nicest people. Thanks. And to the ones who have e-mailed me direct.

OK. I suppose this really started with the nightmare of Peter getting his paperwork ready for his AGM last Sunday. I think I have said what a dog's breakfast he made of it all, and how it took about three hours to sort out five bits of paper and put them in order. But anyway, he accomplished his AGM in truly pompous style and that was that.

He went to bed almost as soon as he came home after the meeting on Monday, because he was 'tired'. Any time I spoke to him it was as though I had wakened him from a very deep sleep, and he was drowsy and slightly incoherent, but then so am I if you wake me up from a nice zizz. And because of the post-radiotherapy fatigue, and the broken nights, it didn't really occur to me to question the excessive sleep - until Thursday, when he began to make even less sense than usual. At 10 o'clock that night he asked me for a torch, because he had 'dropped something'. But he didn't know what he had dropped, except that it was something he 'always had in his hand'. I thought he must mean the remote control for his TV because he quite often goes off to sleep still holding it, but the remote was in its rightful place and the pair of us searched the room, even under the furniture, for the mythical 'something' that had been dropped. Even Boris helped, but to no avail.

On Friday morning he went downstairs to fetch something, and had to rest on the way back up because he was so breathless: it was as though there wasn't enough oxygen going round to energise him, so I rang the doctor. She came round in about half an hour, and checked him over; his sats were rubbish, so the decision was made and she asked me to get a bag packed and she would phone and let me know which ward he should report to. Packing a bag was a nightmare. Everything I put in the bag he took out again, but we got there eventually, minus some vital items like his phone charger and the adaptor for his electric razor. He was admitted to the triage department, they checked everything and shoved him on oxygen, and took some blood. Initially they thought he had an infection, and set up a drip with a one-size-fits-all antibiotic, and once his bed was ready he was trundled off to take up residence in a 6-bed ward.

A nice doctor took a history, and decided to send him for a chest X-ray, and then thought better of it and ordered the X-ray Department to come to him. So a young lad of about 15 wheeled this almighty great machine to Peter's bed, he smiled for the camera, and seconds later everybody was examining the pictures on the screen.

At 3am this morning a nurse discovered Peter phoning me because I was 'late for visiting'. He thought it was 3pm.

Today he has been moved up a floor (the seventh, fabulous views) and has had a CT scan. A nice young doctor phoned me while I was actually walking into the hospital and said she would have a chat once I was in the ward. When I reached him, Peter was angry and upset. The doctor had already tried to speak to him, but in one of his lucid moments he hadn't 'liked the way this conversation was heading' so she had abandoned the bedside chat and was going to speak to me instead. She led me off to the dayroom, and I didn't much like the way our conversation went either, because it started with the results of the CAT scan (blood clots on his lungs) and continued in the direction of DNR and much talk of 'discussing it with the team'. Thank God Dr Feelgood is on the team.

Meantime, two of the nurses are playing 'on with the oxygen' and 'off with the oxygen'. And a staff nurse brought round his creons at evening visiting. Two hours after his meal. I asked why he hadn't received them WITH his meal, and she told me they had only just come up from the pharmacy. I had packed his creons along with his insulin when he was admitted, but of course

Nurse Knows Best and in any case his creons had been lost in the move to the new ward.

At afternoon visiting he decided to have a shower but came back to his bed just wearing a towel and minus his T-shirt, pants and dressing gown. I retrieved them, soaking wet, from the floor of the shower. No harm done, but it could have been Peter I was retrieving, soaking wet, from the floor of the shower. At evening visiting he had a shave, and now feels more human, and we went for a walk around the ward so that he could orientate himself a bit. We found the dayroom with a TV (It costs £20 a day to have a bedside TV/phone) and now he knows where he is. They moved him during the night and he was upset to wake and find himself in a strange place this morning.

His buddy turned up to evening visiting, so I came home after an hour to tend to my Other Patient. The toothless one is doing just fine and living like a lord on minced chicken and shredded up sliced beef. Good old Lidl !

My swimming/gym friends have nominated one of their number to get my news and then they share it in the jacuzzi.

Last night, despite Peter being in hospital - or perhaps because he was in hospital - I slept all night, from midnight until 6, without waking up once.

So that's where we are right now. I'm sorry this is so long and drawn out. I'm buoyed up by your support and think that perhaps a forum family is almost better than a real family - if the argument I witnessed in the lift at the hospital today is anything to go by. Three sisters, none of whom wanted Mum (80, and quite poorly) to come and live with them now that she is ready for discharge . . . . . .

Night folks, now that I've sent most of you to sleep I'm off to chat to my cat.

Much love

Mo

[Veema]

Dearest Mo...(every time I type Mo the damn autocorrect changes it to No)...sorry to hear the latest instalment...I hope this is a blip for Peter and that they can treat the clots without too much bother.

Loads of love

Vx