Thanks for sharing your experiences . . .

[Justamo]

Back from seeing my cousin. Awful journey there - when we landed at Bristol the rain was coming down in bucket loads, and of course it was dark. So I had to find my way out of the airport, in a strange car, with building works going on all around and practically zero visibility. The road south was heavily congested and my sat nav is not quite up to date, but eventually I made it.

Jo's cancer is inoperable, and her oncologist says that her heart is not strong enough for standard chemotherapy, but she has offered her a place on a trial, so Jo has accepted. She gave me the papers to read and it's a blind trial offering a combination of drugs at different strengths. The alternative to the trial is no treatment, so Jo is grateful for the opportunity.

What was reassuring though was the way in which her partner is caring for her. Jo is not mollycoddled, but encouraged to do all her usual tasks without somebody hovering over her continually asking if she is alright. It's a beautiful friendship - platonic, as if that mattered - and they are devoted to each other.

So I came away feeling certain that she couldn't have better care, and have promised to go back in the spring to see the garden which they are planning. They only moved to this house earlier six months ago and alterations and improvements are still in progress.

Peter looked after himself very well, Boris turned somersaults when I got home, so it's nice to be back in my own nest again.

Feel a bit drained now so off to bed.

Take care

Love Mo

[Dandygal76]

Mo, I hope you realise it is your own damned fault you are always left until last in my responses and hence they are always late! You just write loads and I never thought I would find such a match in a wordsmith as you are. I always wait until I have time to reply properly and read over your post properly.

I cannot believe you have the patience to make your own cards.. I do not send any at all. I have such a huge family I would have to start writing them in January, let alone make them. Why is everyone so crafty on here (not that crafty, the other one!). It makes me feel wholly inadequate as I play another game of bubble speed on gameduell to pass the time and at a loss of 40p. I should make something and be more productive. You all make me feel very lazy.

I have never dealt with Hypo's, we suffer with dad always on high levels of glucose and your blood sugar saga must be so difficult to deal with on top of everything including the constipation. Dad has the opposite but only on the few days after chemo. It is mad how everyone has such different symptoms around this illness. I am glad he seems to have sorted it and evacuated what is necessary.

I think I might start an aqua-aerobics class somewhere. I didn't think to do something like that and I am still plugging away at running at them moment but water aerobics sounds fun. I seem to be more running than couch at the moment so that has changed but I have fallen dismally off the wagon this weekend and had far too much wine. I am glad though that you are getting out and about and some 'me' time. It is so important to do that. This disease and our loved ones can run us ragged.

I think the NHS is so paranoid about cocking things up that they like everything written on a form about a 100 times. Even with my dealings with them through work they like that bit of paper sent with a signature on it. Even the Council has managed to move a little bit into this century and accept electronic verification. But, the NHS is a law unto itself. That is quite awful he had to wait so long on the EUS as well.. perhaps they were waiting on another form!

I hope you have had a nice time with you cousin and that the boys did not fall out over the football. You never know, they might appreciate the quality time together with everything going on. Onto chemo now isn't it? I hope that Peter breezes it and is one of the 'lucky' ones to that extent.

Much love.

DG

Edited November 21, 2016 by Dandygal76

[Dandygal76]

I wrote all that and you had already posted the next chapter... keep up DG! It does sound like you had a positive experience with your cousin and I am glad you managed to get there and to have the time away. And, it sounds like your patient managed very well! From the initial raw emotions a PC diagnoses brings things do seem to settle a bit after a time and some semblance of normality returns for some of us. x

[Guest]

Mo darling,

So glad you managed the trip as I think you are less anxious about your cousin now. It's hell but at least you know she is well cared for and can now return to Peter and Boris. Saying cheerio at the end of a visit is hard isn't it? No wonder you felt drained after it all. A man I know at a retirement speech said he would not say goodbye but preferred the old sailors parting of "Farewell" its nice when you think about it, fare well, and says it all really.

I hope you. Peter and Boris have a good few days and I look forward (always) to your posts whatever they may be.

Much love, M xx

[Dandygal76]

Good luck tomorrow Mo. I hope Peter is well through the treatment and do let us know how you both get on. x

[Justamo]

Right. OK. We saw Dr Feelgood today in the MacMillan Suite and it's All Systems Go for chemo tomorrow. He doesn't have the results of the EUS which was done last Thursday, and rang the lab while we were there to try to hurry things up a little. All he could tell us was that it's definitely cancer, but he also pointed out that Peter has a very large cyst in one of his kidneys. Apparently, that's nothing to be alarmed about because lots of people have cysts in their kidneys but it does mean that Peter must drink more water - or 'clear' fluids. His CA19.9 is 135.

Strange that we should both be quite relaxed about having chemotherapy. Not a pleasant prospect but it seems less savage than the proposed surgery. Peter is happy that there is now a set course of action, and Dr Feelgood gives him confidence. We've decided that I will drop Peter off at the unit tomorrow, go for a swim, and then Peter will ring me when he's ready to be collected. They've told us it should take 90 minutes.

DG, do try aquarobics. Our group has great fun, and we have a super instructor who is very careful about replacement knees and hips and bad backs. (We are all mature ladies. Some of us are more mature than others, and some just LOOK more mature. Like me). I really wish I could go running, but it's impossible. At the risk of being misunderstood I have to say that you can do more things in water than you could ever do on dry land. Give it a try. I have had the occasional wardrobe malfunction because I lost weight and my swimsuit got a trifle big, but I went shopping straight away and bought tankinis which are great if your bottom and top don't match.

Looking at the news last night and today I think I was quite lucky to get away from Bristol when I did. The roads were pretty awful, but I didn't drive through any floods to get to the airport. Good job I wasn't planning on travelling by train - the railway line has been washed away.

Peter spent the afternoon visiting a friend who has just had a cancer op to remove a lump from behind his ear. The same friend lost his son and his wife to cancer and has been so very kind to Peter, taking him out and making sure he is OK. Sometimes life just doesn't seem fair, does it? Some people get more than their share of grief.

Must stop now, thanks for all your support.

Take care,

Love Mo

[Proud Wife]

The very best of luck to both of you for today. I so hope Peter tolerates chemo well and boris is not too put out if your patient receives all the attention today!!! Thinking of you both and willing you all on

Much love x

[Justamo]

My Patient reported for his first chemo yesterday. I dropped him off with his little man-bag of diabetes equipment and left him to the tender mercies of the staff of the MacMillan Suite. They said he would be 90 minutes, so I added 30 to that and reported back in good time to collect him, but no phone call. I got tired of lurking about in the car so I went off to see if I could find him, was ushered through to the Chemo Room, and no trace of him there.

Then I heard giggles from a corner, and a nurse told me that because they were short of space they had put him in the 'BUPA Wing' - a small side room with a bed off the main treatment room with its rows of reclining chairs. And there was My Patient, flirting with every single nurse and acting like a tart. He had a sandwich in one hand and a cup of coffee in the other, and it looked as though his chemo was over and he was just having a final flush. (Been there, got the chemo T-shirt). He did a bit more flirting, first name terms with about 5 nurses (amazing, because he forgets my name sometimes), and then with a chorus of goodbyes I took him back to the car.

As soon as he was out of sight of his fan club he reverted to type, adopted a limp, and said he felt sick. All nonsense, of course, but I'm prepared to go along with it for the duration. He graciously allowed me to wait on him for the rest of the day, demolished carrot soup and a large sandwich, and displayed a very good appetite for sweet chilli salmon with rice for supper - his favourite meal. So much for feeling sick . . . .

He's OK today, inclined to be a bit crabby, argued with the TV for most of the afternoon and is now tucked up with his teddy while I mess about in my study. He forgot about feeling sick at lunchtime, and at supper time too, but he has taken a couple of the sickness pills they gave him.

So at last, despite Mr Bogeyman, and thanks to Dr Feelgood, we have started our journey*. Boris is fine too, and while the two of them were asleep I mucked out the kitchen and did some girl things like vacuuming the carpet and stuff. "Womens' Work" in our house. I told you he was a bit neanderthal about things like that. He can be as neanderthal as he likes so long as he's still here.

Thanks for your support folks. Been sorely needed this week.

Take care

Love, Mo

*Journey. I hate that word.

[Veema]

Yes...journey...implies a nice trip somewhere...not the chemo unit.

Hope Peter is continuing to do well (translate as 'being a nuisance') today and keeping you on your toes. I jokingly bought Nige one of those little bell things they have on hotel receptions and the like...he got rather too fond of it, but I do miss it's little ding now.

Vx

[Dandygal76]

Haha Mo.. I use that word all the time.. I cannot lose it for some reason even though so many people around cancer have told me they hate the word. We should come up with a new word to use perhaps but I am too tired to think of one right now and I am off to bed to read my book in justamo!

I am glad Peter seems to be coping with all that attention around the chemo. The poor man must be exhausted now with all of the excitement. I hope he has still maintained his appetite today as well. The first day or two on Abraxane has lured us before into a false sense of security but as we know, everyone is different in how they respond and the chemo is different anyway.

I hope you have also managed to get out to your stuff as well to keep yourself busy and healthy. Nothing wrong with squeezing in some me time.

xxx

[Justamo]

Thanks DG and Veema. Yes, I've had an exciting morning. I went to Tesco to buy a chicken and sneered at all the silly people buying tellies and microwaves because they thought they were cheaper as it was Black Friday. Just as I was passing the computer section, a 10" tablet jumped off the shelf and landed in my basket. I couldn't lift it out so I just had to pay for it - you know what they're like in Tesco, they won't let you out until they've swiped your card. They're a bit OCD about stuff like that. I don't have a smart phone but a couple next to me were comparing prices online, and the tablet that attacked me was cheaper than it was on Amazon. So it's not a case of spending £160, it's a matter of saving about £100. Quite thrifty really.

And by the time I had done that I couldn't afford a chicken, so we'll have to eat out of the freezer for a week. I only eat eggs anyway, and there's loads of stuff for Peter, and why shouldn't I spend the housekeeping money on a tablet anyway ? Other people spend theirs on gin. And when it comes to tablets, size is EVERYTHING.

His Nibs is quite the thing, responding to telephone enquiries in a slightly faint voice and assuring people who ring up that he doesn't feel too bad REALLY, and that he'll struggle on somehow. You should have heard him shouting at the telly this afternoon. And seen what he ate for supper.

He's not having Abraxane DG, just Gemcitabine. Dr Feelgood didn't want to use very aggressive therapy in case it put lines on Peter's forehead. And it's not a case of coping with all the attention, right now it's a case of loving it. Today has been OK. Yesterday is history, tomorrow's a mystery, so we're alright at the moment.

And Veema, I wouldn't DARE get him a bell. Not long ago he woke me up at 3 in the morning by singing loudly because he thought it would get him a cup of tea. Can you imagine what he would do if he had a bell ? And where I would put it if it got on my nerves ? Look away now if you are of a nervous disposition.

Take care folks,

Love Mo

[Dandygal76]

Hey Mo, I was just in bed setting my alarm and thought I would check in. I knew Peter was not on abraxane (I am listening I promise) I was just saying I only have the experience of what abraxane does.

Also, with gin size means everything as well. Enjoy your new tablet and make mine a double.

I am glad Peter is still good. I am on phone texting so hopefully you can read it. If not I will edit on the morrow... actually it is today now. X

[Justamo]

My Patient is having a Bad Day. Ergo. we are all having a Bad Day. Boris is in bed, asleep. Peter is in bed, not asleep. (Watching the darts, actually), and feeling nauseous. All he wanted to eat was some clear soup and thin toast. Boris is not feeling nauseous, you will be glad to hear, but then he never does feel nauseous, he just sicks his breakfast up behind the curtains. Because he's eaten it too fast, that's why. Peter is not likely to be sick behind the curtains because the book says he will only FEEL sick, not actually BE sick. And in any case he can't reach the curtains from his sickbed.

I am making soothing noises but otherwise ignoring it. I have dispensed medication and/or drinks at appropriate intervals and have spent the best part of the day setting up the new tablet. As I am a technophobe this has not been an easy task and at one stage I considered bursting into tears but then thought better of it because I don't have an audience.

At least its better chemo than Cisplatin was - I remember projectile vomiting all over the place when I was on that. Enough of vomit, or you'll all be sick of me. (Get it ?)

Take care,

Love Mo

[Guest]

Ah sweet Mo,

It's horrible when they feel poorly isn't it? I think the soothing noises are always welcome so well done for that and for setting up the tablet. I had to get Suzie to set up my iPad (a treat to me when Louis was poorly) so I think you should have a gold star for effort!

Glad that Boris is coping. Have you considered giving him half of his breakfast then waiting 15 minutes before you give him the other half?

I'm sorry that your man is a bit Tom and Dick and can't really offer much help except to keep changing the anti nausea drugs until one works. We did find one in the end for Louis and it make a huge difference. In the meantime we fall back on creating diversions. I spent 8 months doing just that and feel there must be an opening for me somewhere…

Much love M xx

[Dandygal76]

I am sorry Peter is ill Mo. I am right behind Marmalade that you just have to keep changing nausea drugs. We only got the Emend (which is expensive but brilliant) after I trotted down to the trial and asked for it. Saying that, he was so bad that they may have reached the conclusion to try it at that point anyway so it could be coincidence. Until you get them to the point of Emend they have not tried everything - that is the platinum last resort drug in my experience of watching a zillion PC cases.

There is nothing worse than feeling sick all the time but hopefully it was a peek of the symptoms and he feel better in the coming days.

xxx

[Veema]

Nige was recommended arrowroot biscuits for sickness and diarrhoea during chemo, so might be worth a try if the nausea continues or diarrhoea starts.

I hope it doesn't last long as it's rotten for him and rotten for you too having to deal with it. What's his cycle pattern...3 weeks on one week off?

Also Mo...it's important that his blood levels recover for the next session - potassium, calcium and sodium were always the ones to suffer when Nige was on chemo (I know Nige was on a different chemo, but would imagine its the same with bloods), so make sure he's eating bananas (and other fruit), veg, lots of milky stuff and we were told napolina tinned tomatoes (no other brand will do) are great for getting neutrofils back up. Oh...and dark chocolate and red wine are good for red blood cells (the blood donor lady told me that when I couldn't give one time)...maybe that's something you can participate in.

lots of love

Vx

[Dandygal76]

Another thing we was told when dad was really ill is fluids. We gave him a 2L bottle of water to get through a day. If he does not have enough fluids then the chemo concentrates and he is not flushing it out (so we were told - actually I think from PCUK nurses now I think about it). x

[Dandygal76]

Hey Mo, how are things? I hope the nausea has settled down a bit. Seeing our loved ones in such a pickle is very hard. I know from your posts that you like to cook and my mum found this aspect hard around chemo. We are here when and if you need us. x

[Justamo]

Thanks DG, Veema and Marmalade. The MacMillan Suite told us not to get a blood test at the GP this week but to go half an hour earlier for the appointment and they will do the blood test themselves. Makes more sense really, because a blood test on a Monday does not really indicate what the status would be on a Wednesday so a blood test shortly before administration of the chemo will be more accurate.

It's quite hard to tell how bad the nausea actually was. Suddenly, halfway through Sunday, Peter decided he was better - got up, had a good long shower, and behaved quite normally for the rest of the day. He is inclined to wallow a bit, I've noticed it throughout our lives together (44 years). If he feels poorly (quite rare up till now) then he stays in bed and does everything to make himself feel worse. I have a feeling that the feelings of nausea weren't all that bad, but it's so hard to tell. I suggested that we talk about this to the MacMillan staff who would be able to suggest an alternative drug and he was quite put out about it. "I don't want any more tablets". I pointed out, mildly, that it wasn't an additional tablet, simply a substitute, but that fell on stoney ground so I decided to drop the subject as he has apparently forgotten about it. The nausea I mean.

Veema, I wish I could get him to eat bananas but it's impossible to get any fruit down him. He used to enjoy great big fresh fruit salads but over the years his tastes have changed. He will eat tinned pineapple with curry, and tinned peaches with ice cream, but refuses anything else. Strange when I think how much he used to get through. I used to put at least three pieces of fruit in his packed lunch everyday, now he refuses everything except for grapes and they're a bit sugary. I buy a sad little bag of 2 Granny Smiths for myself (love apples in salad) and once a year in January I buy a crate of Seville Oranges for marmalade (not for Marmalade) and the house smells gorgeous for about a week, but that's it.

So today he's been out for a walk, equipped with carbs in his man bag and although the temperature was minus 5 when he set out at 2 o'clock he came back warm and glowing and happy. At the moment he's watching a new Bourne DVD so I've come up to my study for some general browsing and catching up.

It's quite hard to tell if Boris is happy or not. This weather he turns into a fungus and simply appears as something white and furry which pops up in warm, dark places. I think his sickness is due to bolting his breakfast. I feed him a teaspoon at a time, but Peter calls that "Starving The Poor Cat" and dishes it out in handfuls. Siamese cats have narrow jaws and don't always chew their food as they should. So what goes down simply comes back up. It's not sickness, it's really regurgitation, but try standing in a patch of that on the stairs when you've got bare feet in the middle of the night and felicide comes to mind. He did develop real sickness when I went into hospital for major heart surgery, so Peter, fearful of what I would do if Boo got sick, took him to the Vet. After a thorough examination the Vet said "There's nothing wrong with this cat. Has anything happened at home ?" Peter explained that I was in hospital, and the Vet said, "Simple. He's depressed. That will be £60 + VAT please". So then Peter was depressed, too.

He's happy to have his playtime each evening (Boo, not Peter) and is otherwise full of beans, so to date there's only one on the sick list. Let's hope it stays that way.

So it's been a good day for us. Hope you've all had a reasonable weekend.

Take care

Love Mo

[Guest]

Lovely to hear Mo.

Wishing you all a very good night xx

[Proud Wife]

Mo I am really really sorry. Yesterday (or was it the day before when I came on here) I posted on your thread, saying basically how bloody marvellous you are for keeping up the cheery posts etc and to make sure Boris was not neglected. Where my post is, I haven't got a blinking clue. I'd right more but I have the most awful neck/back ache and need to get off poota. I come on and always read what's going on with Peter and I'd hate for you to think I couldn't be bothered to post,

Lots of love xx

[Proud Wife]

Just checked and it's there so if it disappears again.....!!

[Justamo]

PW. I saw that post. Wonder if it was on another thread because I can't see it now.

I think you have a sore neck from reading all my posts. I have a sore neck from writing them. They do go on a bit, don't they ?

Chemo tomorrow. If all goes according to plan he will be OK on Thursday, exhausted on Friday, bed-ridden on Saturday, and OK again on Sunday. Possibly.

Long swim today which was good. The pounds are piling on through lack of exercise so it was good to get moving. I might get to aquarobics tomorrow after the chemo starts so I'll keep my fingers crossed.

Hope everyone is OK today.

Take care

Love Mo

[Justamo]

Hello folks. I can't think where this week has gone. I've caught up with current posts each night, but haven't had time to respond to anything.

Peter had his second chemo on Wednesday. I dropped him off, went for a swim, then picked up a sandwich and a drink and sat with him for the final bits of the treatment. The treatment room is very relaxed and comfortable and the staff are terrific. So cheerful, kind, funny, and with the gift of knowing exactly how to treat each patient - they are quiet and calm when somebody is frightened; they laugh at Peter's attempts at flirting and answer him back; they are deft and experienced and capable. That really is a gift; you can't teach attitude to students, and these nurses are therapists in their own right.

We see Dr Feelgood on 13th December and then he will decide on the frequency of the chemo routine. He said he didn't want to treat Peter 'aggressively' and at present Peter seems so well and happy and is talking about "When I get better...". I can't put a damper on that, but I do change the subject. He saw his friend today who had a large tumour removed from behind his ear, and evidently he's in a real mess. One eye and his mouth are distorted, he has to attend hospital every day to have the dressings changed, and has difficulty eating and drinking. His pain is being controlled, but he's very uncomfortable, and the effect on Peter is to make him grateful that he feels so well.

Not much more to report really, I feel as though we are in limbo until we see Dr Feelgood, but all the time Peter is well and happy I feel more and more that we made the right decision about Mr Bogeyman and his surgical endeavours. I'm aching from head to foot because I've had a swim/gym every day this week and caught up with mates. Peter gets cabin fever if he stays indoors for more than a day but he's been out every afternoon and it's done him good. So it's been a good week for us and thanks to being on Planet PC I am able to be grateful for a 'normal' week.

Take care

Love, Mo

[Guest]

Well done both of you for living for the moment, enjoy all the good days and try not to think too much or get too hung up on doctors appointments, just accept that Peter is doing ok and you are getting to swim and hang out with friends.

It's hard not to think about the next appointment or scan or test but it does no good. Keep he bucket list up to date and make sure you tick off as many as you can. I used to tell Louis the rainy day we had saved for had arrived and we should enjoy ourselves.

Night night God bless

M xx