Thanks for sharing your experiences . . .

[Justamo]

I took your tip about freezing the surplus Seville oranges, and every time I open my freezer I get the scent of orange groves ! Lovely !

Hope the storage and all the associated nitty gritty is not too traumatic. Your whole life ends up in black plastic bags . . . Good luck with it all Marmalade.

X

[Justamo]

Tuesday 11th July : "We have lots of appointments for scans and oncology clinics and stuff, but today was alright and I hope tomorrow will be too. "

Well, tomorrow wasn't OK. On waking on Wednesday, My Patient vomited noisily and copiously for about 15 minutes, mostly in the bathroom. Afterwards he felt floppy and weak, and spent the day lying down in front of the telly and directing operations at Wimbledon. Which is probably why Murray lost. He's been gloomy ever since. Not because of Murray, but because he feels he has taken a step back in his recovery. Peter thinks that now he's completed his chemotherapy and the subsequent scan showed the tumour to be stable, he is going to Get Better. And I'm not going to rain on his parade.

He hadn't eaten anything strange, his blood sugar was a bit high, and has been erratic ever since, but as his appetite is a bit erratic too, that's understandable. His temperature has stayed normal and there is no evidence of rigours. We'll mention it to the GP next week, but he seems OK today and demolished a large plate of salmon with vegetables and rice this evening.

The only possible reason for the sickness that I can see is because I was so smug about having a good day on Tuesday.

That'll learn me.

[Didge]

This disease has so many twists and turns, many of them puzzling. But anyone who can devour a large meal is in a relatively good place on this journey. Is he in a watch and wait period now? Or is he just having a break from chemo with a planned restart? I do hope he enjoys the men's finals today and that the correct person wins for him whoever his chosen one is! Lots of love, Didge x

[Justamo]

Thanks Didge; just at present he is running the Mercedes F1 team at Silverstone and has used several new combinations of swear words at Sebastian Vettel who thinks he is p!aying bumper cars. Fortunately Hamilton and Bottas are obeying orders issued from the armchair so all bodes well at present. We're only on lap 39 at present so it will be a rush to get to Wimbledon for the men's finals.

He has completed 9 cycles of Gemcitabine and sees Dr Feelgood in September. The tumour is stable and CA19.9 markers have dropped from 135 to 36, so it's wait and see. Except for a bit of debris in his stent which caused a nasty infection and an overnight hospital stay some three weeks ago all is quiet on Planet PC at the moment. He has a scan booked for later this month so there's the possibility of a new stent in the horizon.

Did you get the musician issues sorted ? I used to be hot stuff on the recorder 65 years ago, but don't suppose that's much help. Marmalade is brilliant on the ukelele but she's probably got it in storage now pending her house move.

Love, Mo x

[Didge]

Ah Rob lived close to Silverstone and was an F1 fanatic. It would be his birthday tomorrow. Glad everything seems calm right now. I never found a cellist so we will probably have to manage without. I think someone is actually bringing a ukulele x

[Justamo]

All is quiet on Planet PC at present. My Patient is out with his little friends playing golf on a links course 50 miles away in a screaming hurricane and continual rain. But he rang at lunchtime to tell me all about the shot he duffed on the 8th, and the depth of the bunker on the 12th. And, oh yes, he remembered to test his blood and eat enough carbs so that he didn't slide gently to the ground while somebody was putting. It's considered quite Bad Form to put your opponent off his game by collapsing during a match - there's probably an R & A rule about it somewhere.

It's just about a year since all this started. And then all he really wanted to know was "When could he play golf again ? "

Things looked so bad a year ago I don't think anybody expected him to pick up a club again.

And I am not going to tempt providence by saying that today is a good day because the last time I did that we had an Episode. So it's just a normal day, except that I cleaned the oven which was on the point of being condemned. And I had a good old natter with the girls at the pool. And it's POURING so I might nip out to the garage and build an Ark. With space for Boris and his watering can.

What nonsense.

Love, Mo

[Marmalade]

Hi Mo,

Glad the boy is out with his clubs and you got a swim. It's absolutely fabulous that Peter has had another year and is doing ok. This disease certainly makes you have a good look at your priorities and you have done really well too. I hope you take care of yourself and your health issues. You need to be in tip top condition too.

I have cleaned two ovens this week so I fully understand your sense of achievement!

Love to all,

M xxx

PS in my holiday home and handed the keys to the old house over today.

[sandraW]

I hope all is well Mo, I keep looking out for your posts, hopefully you are just busy having normal days take care love sandrax xx

[Dandygal76]

Hey lovely Mo. I also hope all is okay. Let us know when you can. X

[Justamo]

Hello. Remember me ? I used to post about four times a day and bore you all stupid.

I have spent the past 6 weeks or so with my head in the sand, pretending that Planet PC is as remote as Jupiter. Gardening, sewing, computering, designing, swimming, sheltering from the rain, all sorts of things, none of which is connected to PC. I even bought a wrist thingy that nags you when you put your feet up for five minutes to make sure I exercise enough.

But - I think the carnival may be over. Perhaps not over, but coming to a halt. Despite this ghastly disease we have had a mostly good year, except for a skirmish with Mr Bogeyman the Manic Surgeon, and an issue or two with the Fat Dietician, and apart from an admission to hospital for an infection in his stent, My Patient has done remarkably well. He has played golf most weekends, has driven his electric buggy round the course, fallen off it once, and even refereed some matches. If he has a busy day then he spends most of the next day in bed, and why not ? The really good thing is that he's had no pain. Until now.

I have noticed over the past 3 or 4 weeks that he is hiccuping a lot. And he's been complaining of pain. "Did I think it was indigestion ?" No, I didn't. And he's feeling bloated and, in his words, bunged up. "Perhaps it's a virus - Jimmy had it last week, he was as sick as a dog". And the pain is waking him at night. We have some slow release painkillers (Longtec) and some fast release painkillers (Shortec). I have tried, so help me, a thousand times to explain that he should take the Longtec 12 hours apart, and then use the Shortec for break-through pain, but it's a complete waste of my time. And now the pain has seriously disrupted his golf, so it was easy to persuade him to see his GP. He had a scan last week and has a long-standing appointment with Dr Feelgood for 1st September, so couldn't see the point of seeing his GP at this stage, but while we were at the hospital yesterday morning for an eye clinic appointment for him and an orthopedic appointment for me I rang his GP and managed to get an emergency appointment for the afternoon.

So on the way home from the hospital we went into his GP who explained, all over again, how Peter should be using his pain relief, and this time he paid attention. And on the way home from the GP I stopped at the barbers and told him that we weren't going any further until his shoulder length hair had been cut, (he was growing it for a man-bun, but that's a bit silly at 85) so we killed a whole flock of birds with one stone.

And then, while I put the kettle on and Peter explained to Boris where we had been all day, Peter finally acknowledged that he had a terminal illness and thought that, "We had better talk about hymns and things". Not in a sad or maudlin way, just wanting to tidy up practical matters. Peter has never before spoken about his illness in these terms, although we did see our solicitor to update our wills when he was first diagnosed. He had to be dragged to that appointment kicking and screaming, but we did get one or two major matters sorted out and ever since then the subject of his mortality has been off limits.

So we see lovely Dr Feelgood on 1st September and he will have the scan results. No matter what the scan results are I feel that matters have taken a turn downhill and I daresay you will all know exactly where I am coming from. But it's a relief that he now feels able to talk about the probable outcome of this illness and is accepting appropriate pain relief. He has agreed that we'll have a proper talk about things at the weekend, and then we won't have to talk about it ever again. He slept properly last night for the first time in ages, so I think he feels relieved himself.

And I saw the orthopedic surgeon who showed me last year's scan of my pelvis and it looks like crazy paving, except for the white blobs which is where they have tried to stick the bits together with Polyfilla. He is going to do another MRI scan to compare it with the last one, and send me for a DEXa scan, but he thinks I have more stress fractures and there's not a lot they can do about it. It's radiotherapy damage, so deal with it. I have to avoid sudden movements and jumping (!) but it's walking that causes problems and I need to be in good shape to care for Peter. So I'll cancel the ski-boarding holiday and postpone the bungee-jumping trip meantime.

Boris sends his very kindest regards to you all, he now has a plethora of sleeping bags (one in every room) and spurns his nice sensible water dish on the kitchen floor for his blue watering can in the garden. We are now in the midst of the annual spider-fest, and although he pricks up his ears when he hears me run screaming from the bathroom at 3 o'clock in the morning he's too comfy in his sleeping bag to get up and deal with the offending arachnid. I have now resorted to sleeping with the hand-held vacuum cleaner on the pillow.

I hope you are all OK-ish. I'm about to catch up with all the threads I've missed while pretending that there was no such thing as PC.

Love, Mo

[sandraW]

Mo, what can I say. I am just glad, Peter made the most of his time when he was feeling well.

I think we do just get a sense of what is actually happening, when we know our loved ones so well. Hopefully when he gets his pain relief right, he will feel a bit better but it is so hard.

Boris is truly spoilt just as he deserves to be and I know you showed him my post about him not using the watering can so he would prove me wrong.

There certainly are lots of spiders about, I have just found a reasonable sized web in my lounge, I only cleaned it on Sunday, so the spider has been very busy, I felt a bit mean destroying it, spiders don't really bother me tbh as long as they are not too big I can cope.

As for you pretending there is no such thing as PC, why not,worry will not change any outcome

what will be will be, and hopefully you had a good 6 weeks respite.

You problems with you back sound truly horrendous, mu SIL has had a similar problem, she had a small fall and they found about 4/5 fractures she is coping okay at the moment, but it must be a real worry for you. Sending love and ((hugs)) to you both take care love sandrax xx

[Quickasyoucan]

I'm sorry no one has the right to be scared of spiders unless they've seen the buggers we have in Oz.

Mo I am sorry to hear Peter is not feeling so sprightly but boy has he done well so far. Hopefully if changes are shown his tumour will continue to be a slower grower or respond to more treatment.

Dad would have been 84 last Friday a similar age to Peter.

Am sorry to hear about your pelvis that sounds painful. Shame there is no miracle glue invented yet for bones!

Boris sounds like a pig in muck in his life of luxury. All the best xx

[Marmalade]

Darling Mo,

I am so sorry I have been lax in messaging with you. I can't fix it of course but you should know that we are all here, making time and walking with you in good times and bad.

I'm glad Peter has broken his silence on his prognosis and that you will know what he ideally wants to happen to him as things progress. I completely agree that it does not have to dominate the time you have, talk about it, have a good cry and then get on with making things as good as they can be for as long as possible. You will find that the rule books start to be thrown out in favour of comfort and whatever pleasure can be found.

You have been a terrific career and have given Peter and us so many good days. You may well have reached another unwelcome milestone but dips on the roller coaster can be followed by some really good days, not as many perhaps and not lasting as long but still good.

You are brave and an awesome wife and friend, I know you will help Peter face whatever comes along. Please do not ignore your own health, it should not be either his health or yours.

I send you love and prayers Mo and heartfelt wishes for an easy journey. Keep posting.

M xxx

[Dandygal76]

Lovely Mo. I wish I had words and actions that could make things better but I don't. It is important though that you know we have walked your path and that we are here for you. It is always such a pleasure when people do not post because they are living their lives - I find great comfort in it. Now I think you may be on PC planet a bit more... pull up those socks, feed the cat and come here whenever you need. PC has a mind of its own and we will all roll with whatever it brings - with you. x

[Justamo]

Hi folks. I'm trying a bit of distraction therapy so have organised a lunch for the girls at the aquarobics class. And negotiated a free lunch so that we can invite our instructor as our guest ! Sore bones not withstanding, I went to the class today and can manage so long as I don't do any jumping things.

Peter appears quite laid back about Friday's appointment, but appearances can deceive - as we all know. He claims to be feeling sick, and tonight's supper got scraped, almost untasted, into the bucket. I suggested the anti-nausea pills, but he tells me that it's 'not that sort of sick'.

Tomorrow he's arranged an outing with a friend, so that will help take his mind off things.

Thanks for all the support. Much needed, and much appreciated.

Love

Mo

[Marmalade]

Hi Mo,

PW wants me to tell you she is thinking of you and sending positive vibes, she is having some trouble accessing the forum at the moment.

I will also be thinking of you both tomorrow as always M xx

[Dandygal76]

Hey Mo

I hope the scan is okay today. I know our patients can be stubborn as well but I truly believe it is better to nip the symptoms in the bud than let them develop too far and try to get on top. Easier said than done I truly know.

Blips R Us all round I hope.

Much love

xxx

[WifeampMum]

Mo, sending my very best wishes for a positive meeting today.

W&M xx

[Justamo]

Thank you lovely people for all your positive vibes and virtual hugs today. I felt every single one of them.

My Patient and I reported to our lovely Dr Feelgood at 9am promptly. This time Peter was actually With Us, if you know what I mean, as opposed to being there in body but absent in mind and spirit.

Dr Feelgood asked about the pain, and Peter showed him where it was. With a little gentle prompting from Dr F he admitted that yes, the pain was in his back as well, and that it did lessen if he changed position and either laid flat or stood upright. We told him, between us, about other rather worrying symptoms including a feeling of fullness after half a meal, and almost non-stop hiccups. Meantime I am trying very hard to read the notes on the scan which were displayed on Dr FG's computer screen and almost falling off my chair in the process, so he took pity on me and started to read out heavily redacted bits of the report.

The scan, it seems, was not terribly clear. (Really ? A CT scan ?) The tumour was not displayed very clearly because of the stent. (?) However, he didn't mention any spread to liver or lungs. I asked if a CA19.9 test had been done from the last lot of blood, and it hadn't, and he agreed to take a blood sample straight away which would be sent to Sheffield for CA19.9 testing.

He spent some time telling Peter that he had had a good year, with relatively few problems, despite being diagnosed with a terminal illness. At this, Peter blanched, because he had never really admitted to himself that it was a terminal illness, but now his head was out of the sand so he had to take it on board.

He now wishes to discuss Peter's case with the Radiotherapy Consultant. He went on to explain that radiotherapy could help with the pain, but sometimes it can cause bleeding, so there would be a full discussion with the MDT before any action was taken. He also mentioned, briefly, surgery, but didn't suggest further chemotherapy. He arranged a further appointment for 22nd September, and that was that. So, actually, we are no further forward.

Peter sees all this as bad news, but I see it as moderately reassuring news in that no mets anywhere in his abdomen or lungs were mentioned. It's really hard for Peter to take all this on board; having pretended that there was nothing wrong that a few indigestion tablets wouldn't sort out to coming face to face with his own mortality is a tough call. Which is the right way ? I've been looking at this forum since July last year; Peter was diagnosed two months later. I have consulted Dr Google on every possible outcome, had masses of advice and support from this forum, and agonised over everything on a daily basis. I've wept buckets when forum members have lost their loved ones and rejoiced at others' good news and Peter has been oblivious to the whole lot and just concentrated on his golf.

So we trotted round Tescos, tootled off to the next town and looked round the shops, bought a sandwich in a nice small bakers and ate it in the car, and generally had a day off. It was still dry when we got home so I got the lawnmower out and My Patient came and took it away from me when I was halfway through and finished it all off. We had supper off trays in front of the telly, took lots of phone calls, and Peter watched the football and screeched every time somebody scored while I pottered about. My Fitbit says I did 7500 steps today, most of which were in the hospital corridors.

Boris feels neglected, so I had a game with him, and now he's sitting on my left foot while I type this on a proper keyboard. I think it's time for bed - it's been a long and weary day.

And I have learned the hard way that No News isn't necessarily Good News.

Love

Mo

[WifeampMum]

Hi Mo

I would take it as a really good sign that there was no mention of mets and that Dr Feelgood even mentioned surgery again. I know you and Peter have decided that surgery is a no no, but have you also decided against more chemo? If not, I'd be inclined to go back to Feelgood to discuss it.

And long may Peter continue to fully focus on his golf. Psychologists say that when there are worries, women tend to ruminate and men tend to distract. That's certainly true for hubby and me.

Wishing you a day full of pleasant distractions for you both.

W&M xx

[Veebee]

Hi Mo....I'm happy to know that Peter is still managing the England team in among all his other sporting roles and that you are keeping the home fires burning. I loved reading the bit about him taking over the mowing...Allan used to do that with me sometimes...just come out and say nothing but take the mower off me. It's given me a warm glow. It's a lovely gesture. No mets has got to be good news for you both, so try to focus on that. Have a good weekend...I'm off to cut the grass now as it's waving at me. xxx

[Quickasyoucan]

Mo sending you, Peter and Boris good thoughts from down under. X

[Justamo]

Quickly, I read out your message to Peter, and he says 'thanks'. He played 15 holes of golf this morning, ate his lunch, and has been Power Napping ever since. Boris is Power Napping in one of his sleeping bags and I'm thinking about doing the day's washing up.

Any more thoughts on sharing your life with another dog ? Or is it too soon after losing Jake ?

Love, Mo

[Quickasyoucan]

Mo, 15 holes that's pretty impressive!

I have expressed an interest in a puppy from my dog trainer's labrador who was due to be mated in October but this has now been postponed till her next season. To be honest still struggling without my jakey and dad, so not a bad thing to have some time. Likely to be this time next year if a suitable pup eventuates.

Thanks for asking. Sending positive thoughts to you b and p. X

[Veema]

Mo...does Peter take something like omeprazole / lansaprazole etc? It helps the creon do what it's supposed to and might help with the feeling full.