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Justamo

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Fab news Mo...I seem to remember our oncologists saying that CA19s in the 30s was considered normal and that you or I would have a similar result should they test us, so that really is fantastic.


Vx

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Thank you for being so pleased about my good news.


It is only by having the benefit of your experience, strength and support that I am able to appreciate the extreme highs and lows of this awful disease and can celebrate the good times with the same people who have dragged me up and out of the bad times.


Peter is now looking forward to taking delivery of his electric buggy (finished in green - he thought red was a bit like Mr President's Trump-mobile as seen at Carnoustie) and talking about additional gadgets for it. Alloy wheels, sun roof, sat-nav, MP3 player, jelly-baby dispenser, go-fast stripes, tinted windows etc. (Only Joking !) I am wondering just where the hook for the Tesco trolley fits on but no doubt all will become clear.


And, Marmalade, I shall run up a little purple number just as soon as I can . . . . . .


Take care

Love Mo

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Everyone on here knows by now that I am obsessive about CA19-9 markers and Mo, Peter's are just GREAT! As rumour has it, scans can sometimes be behind real time, personally (and of course without any medical experience or knowledge) I believe that markers are far more reliable as an indicator for what's going on. So my lovely funny (ha ha not strange) Mo, I am absolutely thrilled for you, Peter, Boris, the new buggy and the manufacturers of jelly babies (jelly tots far more enjoyable) it defo seems that Peter is responding to treatment!


Lots of love to you all xxx

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Hi Mo thinking of you both and hope that Peter is having a great weekend ...has the golf buggy arrived yet if so I can just imagine his excitement .....hello wide open spaces here I come. Hope your back is a bit easier. Looking at PW's post I gather Peter is another jelly baby addict Pete can get through massive amounts of them. He is in hiccup mode again and has discovered that whilst sooking humbugs he doesn't hiccup so he is chomping on them like crazy. Take care and have a lovely weekend . Hugs

Elaine

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Thanks, girls, for your kind remarks. I had anticipated a quietish Friday, a bedridden Saturday and a slightly more upbeat Sunday after Wednesday chemo last week. But Peter did it His Way.


The Golf Pro rang on Friday to say that the buggy had arrived, so of course My Patient had to rise from his sick bed to rush up to the club to make a minute examination of the new arrival. I was not privy to this ceremony, but when he got home he was flushed and excited and thrilled to bits with his new boytoy. And his blood was 4.8, so he seemed a bit drunk as well. I forced him to sit down and shut up and eat his supper, and was treated to a long and boring description of a green thingy on wheels which drives itself along and carries one and ones golf clubs (yawn).


On Saturday (normally a bed-bound day, with me waiting upon him hand and foot) he dragged himself out of bed and went up to the club to 'measure the size of the battery'. He needs to make a little shelf to hold the battery while it's charging in the special shed they have at the club. On Sunday he braved the DIYers at B & Q to buy some little shelf brackets with which to hold up the little shelf which holds the battery while it is charging in the special shed etc. I had threatened him with An Atmosphere if he dared to be late for lunch because I was cooking a roast, and he shot in with 5 minutes to spare looking ghastly. Once he had done his blood (very low, but just legal to drive) I started to dish up when he realised that he had lost the ignition key for his new baby.


He was a bit shaky by then, so the easiest thing to do was bung the entire roast dinner in the cupboard (oven too hot), and rush him back to the club in my car. Fortunately, I had labelled the key tags the day before and somebody had handed the key in to the pro's shop. Peter had dropped it in the car park.


So we got back home with me firmly clutching the keys, a very quiet patient clutching at straws of excuses and ate our ruined dinner. And in case you are wondering, kale is not improved by being kept lukewarm. Neither are parsnips, carrots or roast potatoes. And gravy goes solid. And the microwave doesn't improves things much either. Still soggy, but hot soggy.


He spent the rest of the afternoon in the armchair, sleeping, and really not feeling terribly well at all while I read the papers in grim silence. An early night put things more or less right again, and this morning he went up to the club (while I was swimming) with his little toolbag and the bits of the special shelf and installed his designer shelf next to his buggy.


Please bear in mind that the foregoing events were narrated by a peed-off member of the General Public and do not constitute medical advice. If you have just had chemotherapy you are not advised to get in your car and race about doing stupid things with tools and keys. For further information on appropriate behaviour after a helping of toxic waste please seek advice elsewhere on this website, don't pick on my thread.


He did it His Way.

Take care, Love Mo

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Ha ha...sorry Mo, but good on Peter...naughty as he is...he's living his life.


Oh...and kale is rank at the best of times!


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Oh Mo, you are so funny and I bet half the time you don't mean to be!


Dare I ask if the roast survived?


Lots of love xx

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I really didn't mean to be funny, and yes, the roast survived and had the delicate texture of shoe leather which has been stamped on. It wasn't kale, I just said that so you would think I was trendy, it was little bits of sprouting kale which are nice if you slightly undercook them and then put some oil on top. (I refuse to say drizzle). The spuds were OK though. The peas and carrots took a starring role in Monday night's stirfry (it used to be called bubble-and-squeak) but the parsnips and kale received a christian burial in the compost heap.


I feel almost guilty talking about Peter's chemo in a lighthearted way when others on this forum are really suffering. We only have a short journey to hospital, the appointments are early so the car park isn't completely packed, and it's as painless as it can be. I used to have to stay in overnight when I had chemo but Peter is only there for 2 hours max.


Anyway, today he attended the chemo clinic, drenched in expensive aftershave for his weekly flirt with the nurses. One of them told him that he should really take it easy after chemo because the side effects were cumulative and after 5 cycles he could begin to feel more nauseous and more fatigued. Because somebody in a uniform said it, he will obey instantly. I said it last week and was ignored. So let's hope we don't have a repeat of last week's shennanigans with golf buggies etc. If necessary I shall confiscate his car keys.


This week we'll do it My Way.

Love, Mo

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Oh Mo, perhaps you don't realise what a tonic your posts are. It's posts like that which perk us up. Although I'm certainly not suffering as others are, I've not had lots to laugh about lately so I'm grateful for any chuckle!


Fingers crossed the patient will obey.


Lots of love xx

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Mo I love it especially the bit about stir fry previously being bubble and squeak....you are a tonic. I always have this picture in my mind of Peter wafting through the corridors of the chemo unit leaving a trail of expensive aftershave behind him it's brilliant. I hope he doesn't have too much of a reaction to his chemo this week although the lure of his new toy may be too much and he will do his damndest to get up there and power it up and go riding into the blue yonder. He is marvellous. I cannot wait to hear what his next purchase will be after the aftershave and scooter. I bet he is planning it already. Seriously though hope it is a good weekend for him which in turn is good for you. Hugs

Elaine

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Elaine, when Peter was 9st he did waft along corridors like a consumptive poet with a hand to his fevered brow.

Now he's 12st and he plods. Plod. Plod. Plod.

I hope the buggy is up to his weight, that's all.

Love, Mo

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Well, we got through the weekend as anticipated, except that the nausea is now more pronounced. My Patient feels sick a lot of the time, although eating does take the feeling away for a while. Strange. I would have thought that it made it worse, but chemo is a weird thing and no two people respond to toxic waste the same way. He really does look fat now, and hates it, but Dr Feelgood nearly had a fit when he suggested that he would like to lose some weight.


I wonder if his insulin dose was modified a bit it may help things ? I've e-mailed his nice diabetes nurse with all the blood readings since January 1st, and he is going to have a look. He mentioned an algorithm which may be helpful, and will get back to us, and I hope he's going to provide the Ladybird Book of Algorithms because I don't even know what they are in relation to diabetes.


Before he was struck all of a heap with nausea, Peter even suggested that he would prepare dinner for us. His Signature Dish is boiled rice. Sometimes it's boiled rice with a twist, the twist being that he forgot to add any salt, so he hasn't been encouraged to forge a new career in my kitchen. He suffers from Neanderthal Syndrome, meaning that the kitchen and associated equipment (sink, cooker etc) constitute a brave new world and he awards himself a Michelin star each time he makes a piece of toast or slaps his instant porridge in the microwave.


I can't mess about with his diet because his blood sugar leaps about all over the place after chemo (I wonder if Gemcitabine contains sugar ?) but the additional weight is making him even more weary. One of the rites of passage when you hit the magical Six Oh is saying "Uff" every time you sit down or stand up. Peter says "Uff" for nothing. He even says it when he changes gear. It's been too wet to take his buggy out (He doesn't want to get it dirty - does anybody know of a tarmacked golf course anywhere ?) but this morning he went to hit some golf balls with our friend the club professional. He probably said "Uff" every time he walloped the ball and the club pro couldn't stand it any longer.


Boris, by contrast, says "Woo". I have managed to wean him off Fruits of the Forest Activia Yoghurt, and instead am encouraging Plain No Nonsense Activia Yoghurt with Bisafillidophulus. Or something. He has taken up residence under the apple tree where every bird in the district can see his large white stern (you can probably see it from space) so I don't think there's any chance of him supplementing his meals with a feathery entree.


Enough nonsense, I'm currently making a jacket and have spent half an hour trying to pin shoulder pads in the right place while wearing it and having stabbed myself 50 times I have given up. I'm off to make dinner - not rice, you'll be glad to hear, but some salmon and new potatoes and broccoli. I'm going to have a boiled egg because nothing fits me and we're going out on Saturday night - nausea permitting.


Hope you're all well.

Or well-ish, anyway.

Take care

Love Mo

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Oh, Mo... you are a comic. I'm piling the weight on...I lost almost 3 stone at SW a few years ago and kept it off until last year. Now, I daren't get on the scales. Allan won't get on them because he's so scrawny and I don't get on because I'm in denial. I dust the blooming things.


You should buy yourself a mannequin for your dressmaking.


Vee xx

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Good morning Mo as per usual your post uplifted me. I hope the diabetes nurse comes up with some answers soon and that Peters nausea calms down ....it must be horrid for him. I can imagine Dr Feelgoods face when he asked about losing weight. Like you I need to get some of this blubber off that's been going on at an alarming rate.....I am making all these fattening foods to try and put weight on Pete and I am scoffing them too , it has to stop. Does Peter have chemo this week ? . I hope his nausea gets under control this week. Hugs

Elaine

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When I was pregnant and had nausea, eating made it better...well, eating salty hula hoops and pineapple did, so I get that...his body will be craving what it needs. I always need a salty Chinese takeaway if I have a hangover...suppose it's a bit like that. And how strange...a fat PC patient...never heard of one of those before!


Think you've just got to roll (no pun intended) with it.


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Hello darling Mo,


You are very quiet but I see you are checking up on all of us and making sure we are ok, you are such a sweetie.


Your witty and comic posts on here are such a tonic, as is your care for others but we understand that beneath it all you have all the same collywobbles and anxieties as the rest of us so never feel that you must always be the life and sole of the party if you don't feel like it. We will still love you even if you have gone into a tail spin over blood sugars or want to go doolally with a meat cleaver.


Equally, you must not feel reticent to tell us that life with Peter and Boris is going well, its always a joy to celebrate and having been through PC with the many friends on here, our expectations are modest and we are easily impressed!


Please give Peter and Boris a hug from me and huge hugs for you, I will email soon I promise and tell you all about my new car and my Ukulele lessons....


M xx


M xx

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Hi Mo I see it has to be a lovely warm weekend just the weather for scooter journeys I hope Peter is raring to go ....just on to wish you Peter and Boris a lovely weekend I don't see Boris needing his cozy sleeping bag for the next few days. Hugs

Elaine

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Well, it's been a good week so far. We've had 4 hospital appointments - one eye clinic and three PC related, but all has gone quite smoothly. Highlight of the week was a chat with Dr Feelgood who is delighted with Peter's progress. Not exactly Peter's progress, but the lack of progress of the tumour. He had chemo yesterday, he's gone out this afternoon to deliver a birthday present and see friends, and I'm marooned indoors because my car has gone in for servicing. Which is fine, because Health and Safety would condemn my house, and I'm thinking of putting my name down for that awful Channel 4 programme where 2 bossy women come and inspect all your nooks and crannies and then attack them with lemon juice and bicarbonate of soda. So all is hoovered, polished and shiny. For now, anyway.


It's a beautiful sunny afternoon, which makes me want to go out in the garden and roll around in the grass on my back and whinny, but I'll confine myself to some gentle deadheading of the daffs and a little light pruning of the honeysuckle which has gone berserk. I just love it when the trees look as though they are wreathed in light green mist, and when you look more closely you realise that the leaves will be unfolding soon. It's easier to be optimistic when it's sunny.


I don't feel comfortable sharing bright and cheery news when other people are suffering so much, but then I think how happy good news from Stephua and Ruthus makes me feel so I post anyway.


Take care

Love Mo

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You carry on sharing Mo, you are not expected to carry everyone else's grief and couldn't even if you tried. Good news cheers us all up and gives many people hope. Good for Peter and for you!


I hope your garden is fairly private as rolling about whinnying might attract unwanted attention from men in white coats but hey, you have to be a little mad to survive life don't you?


I am enjoying the garden too, I have blackbirds nesting in my honeysuckle so it will have to stay berserk for now. Can't stop long as I am away to my ukulele lesson. I fear teaching me to produce anything like music with my fat fingers is going to be a long job!


Love to you both xxx

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Mo you are a tonic, and you need to share the good news, we all need a lift, when other are struggling so.

I was thinking of applying for that programme too Mo but if it only took you a day to get things shining,your house can not be anything as bad as mine. My garden looks so lost, but I just can't seem to summon up any energy to tackle it, but then again cutting the grass is on my list for today, but whether it will actually get done is another matter. I have got Robins and Wrens zooming round the garden and the Blackbirds and Thrushes keep digging in the plant pots for nesting material, they make a dreadful mess throwing it all over, so they must like the chaos.

Marmalade, the ukulele sounds exciting, I am afraid I am not musical at all but I admire you and I am sure you will do splendidly, its a shame we don't have listenability on the forum you could have played us a tune. love to you both sandrax xx

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Hey Mo,


My house got unbelievably messy and dis-organised (and my work) when dealing with all things PC related. Who cares, just enjoy the moment and live for today. I also have a neanderthal male in the house. You were treated with bolied rice because I have never been cooked a meal and have to give a big pat on the head should said bloke actually manage to put items in the correct place when emptying the dishwasher rather than any space he can find. In exchange I make sure I paint wonky and I purposely make very bad tasting tea. So ying and yang in many ways.


It has been nice weather for the garden and it is easier to be optimistic in the sunshine. Some of me has been grateful that spring was on the way with dad going. Mum is also doing the garden and you can just go out and live. I could not imagine it being in the depths of winter as well.


You should post happy things it brings hope and is so needed when you are fighting. Wouldn't it just be awful if everyone who came here just read desperation and sadness.


I am glad for one that you post and I am glad that Peter is doing well. I am willing you all on and it makes my day to know another persons day has not been beaten down by bloody pancreatic cancer.


Lots of Love.


Leigha

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DG it's lovely to have you back on the forum. I know you keep in touch on Facebook but I don't Face or Tweet so unless you pop up on here I don't know how you are.


Peter has had a very quiet weekend. Dr Feelgood has reduced the strength of his chemo for the last three cycles so after last week's session Peter expected to feel better than usual, but actually he's felt a bit grim. Very tired, a bit fed up, and this afternoon while I was doing some fairly major gardening he decided to help. He heaved a bag of bark chippings onto his shoulder and walked a few paces with it and then went pale green and had to sit down for a while. His lack of strength is an unwelcome reminder that he's suffering from a major illness and needs to pace himself carefully. Careful management of his symptoms, appropriate pain relief and good support from the specialist Diabetes Nurse means that he is able to push PC to the back of his mind and these occasional reminders of his illness surprise and upset him. Me telling him to take it easy is a waste of time, and just irritates him.


I think we are truly blessed that he feels as good as he does. I have stopped looking for evidence of deterioration and just enjoy each day that he feels OK.


On a lighter note I should report that Boris is enjoying the better weather. He inspects the garden carefully each morning, kills a few lions and tigers, patrols the greenhouse, and then takes up his sentry position under the apple tree so that he can monitor the birds nesting in the viburnum. Their alarm system of anxious chirps means that his vigilance is wasted so I'm not too bothered about their safety. He's currently asleep with one eye open in his sleeping bag on my bed waiting for me to stop tapping and pay him some attention. I've just got to go and check My Patient's blood, shove some insulin into his tummy, and then I can take the rest of the day off.


Take care,

Love Mo

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  • 3 weeks later...

I know. It's been ages. I've been quite busy with waking the garden up from its winter sleep, and being bossy about washing quilts and so on but it's all been distraction therapy really.

The loss of Ruth, and the awful deterioration and death of Pete has cast a shadow over everything. And when Peter said that I seemed a bit quiet, and was anything wrong, I just didn't feel that I could tell him why. Maybe that was wrong, and I should have been totally honest about why I was moping and reading the same page of a book over and over again, but instinct told me to shut up, so I did.


He has had his seventh cycle of chemo since I last wrote and on Wednesday will have the second part of his eighth cycle. Just one more cycle to go, and then what ? Don't know yet. We saw Dr Feelgood last Tuesday; he was concerned when Peter said he was terribly tired and wanted to postpone the eight cycle for a week or so but Peter was crestfallen and wanted to continue so the Doc said 'OK'. I think Peter was overtired and stressed when we saw Dr Feelgood because we had arrived at the clinic half an hour early for our appointment and we were eventually seen over 2 hours later. Had he been seen on time he would have been more cheerful but that's how it was. His blood sugar was a bit down too, despite me feeding him on bananas and biscuits and that didn't really help. Anyway, the treatment continues and I am more grateful than ever that we didn't go ahead with Mr Bogeyman's surgical endeavours.


Peter's weight is bothering him. He has gained a lot (so have I) but Dr Feelgood went potty when Peter asked if he could try to lose some weight. In fact there were sharp intakes of breath from all the staff so we haven't mentioned it again. Actually, his appetite has waned a bit this week and at his weekly weigh-in this morning he had lost 1lb so he feels a bit more cheerful. He met his Diabetes Specialist Nurse at the golf club last week and has been promised an early appointment so look at his insulin dosage. It may be a bit high which is making him feel hungrier than usual. I would prefer that he stayed the same weight because there will come a time when he needs every ounce, but I can't say that to him.


The goal, since diagnosis, has been to play golf again and to this end he has spent vast amounts of money on a replacement 'recovery' iron (whatever that is) and a new driver. The sort you hit, not go to Tescos in. He's even had a couple of lessons and the pièce de résistance has been a magnificent electric golf buggy which he can drive round the course. Today should have been the debut of this beast, but snow was forecast and down it came. So his guest appearance in a small competition has been postponed until the snow melts (probably some time in June). At one time snow wouldn't have put him off, provided he could find somebody else silly enough to play in it, but the old order changeth and telly does have its attractions when the weather is lousy.


He is a bit subdued; whether it's fatigue or irritation at hospital appointments I'm not sure, and he sits in silence sometimes which is very unusual for Peter. I'm not pleased to note that somebody has given him a book about curing cancer by diet and he's dipping into it.


By contrast, Boris is bouncing. He is entranced by the avian activity in the garden and has various vantage points where he can sit and gaze longingly at his prey. Sadly, his prey always sees him first so he is unlikely to be successful. If only he had known that a pair of starlings had broken into the roof space via a ventilation grid (they pecked it until it fell out) and were only a few feet above him. We Got A Man In with a very long ladder and 16 ventilation grids have been replaced and the illegal immigrants evicted.


I've been improving the shining hour by sewing lots of tote bags. Lots of them. In fact I think I'm addicted to making tote bags but it's stopped me eating so many biscuits since I accidentally sewed a Rich Tea into a lining and had to unpick it. This week I have made a start on the golf club programme and it has to be finished by Thursday which is mission impossible but I'll do my best and think up a few lies about its delay.


In spite of being so silent I have been trying to keep up with all your news (inbetween hospital appointments and tote bags).


Take care everyone.

Love, Mo

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So good to see you post Mo, we understand how you feel but we have missed you and news of Peter and Boris.


Just want you to know that we all understand your anxieties, we carers are programmed to look for trouble, it's what we do. Let's hope that Peter picks up a bit, the snow clears before June and Boris does not have to move out to make space for Tote bags.


Love and prayers


Marmalade xx

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