Thanks for sharing your experiences . . .

[Justamo]

Have you missed me ? No, I haven't run off with a toy boy, or had the phone cut off, or been doing a lot of nursing stuff: I've been catching up with the forum most evenings but the days have been so busy that I haven't kick-started the PC, just been using the stupid little tablet. I haven't had anything very significant to say so rather than bore you stupid with " . . . and then I put the washing out..." I've just shut up.

Peter saw Dr Feelgood on Tuesday. Dr Feelgood is Nigerian, and some discreet enquiries told me that his first language is Igbo, so I wrote an Igbo message on his Christmas card and he was stunned. Pleased stunned, not horrified stunned. He remains quite pleased with Peter's progress, but told him that his kidney function wasn't that great and that he must drink water, and Peter received this piece of information as though it was news. I think it was Veema or Proud Wife who told me to try to make sure he drank 2 litres of water a day, but of course I was ignored. Now that Dr Feelgood has said so, he wanted to stop at the supermarket on the way home to buy some water. I refused, because I have enough bottles of water stacked in the garage to turn the Gobi Desert into a rose garden. He gloomily made his selection when we got home, a bottle of Pellegrino, (a perky little bouquet, quite amusing in a citrussy kind of way with undertones of linseed oil and exhaust fumes) and got stuck in.

He had his third chemo yesterday with absolutely no side effects that I can see today. Last night he seemed extra tired and fell asleep immediately after his supper so I made him go to bed. Perhaps he will feel under the weather tomorrow, but this morning he's gone into town with my stepson to look at the shops. When they get back I will go for a swim; I've only managed 3 swims in a fortnight and am popping pain killers as a result. Not good. We had an evening out at the gym Christmas event last week - nobody would believe that he is ill, he really looks good. He was 11st 2lbs on Monday. That's a gain of 2st since mid-September. He feels optimistic and fit and is making plans to play golf in February or March next year. I have not commented on these plans because I see no point in raining on his parade and today is more important than tomorrow. And who knows - he might just be well enough.

The staff at the Macmillan Suite are lovely. Of course they are, that's part of their job description, but I think they are super-lovely so when we went on Tuesday we distributed largesse in the form of boxes of biscuits for staff and doctors and more biscuits and boxes of tea and coffee for the volunteers' kitchen. They keep everybody supplied with tea and coffee so it's nice to put something in the kitty, as it were.

Another chemo next week, then Dr Feelgood, then more chemo and a scan. And just in case you are wondering, Mr Bogeyman does not feature on my Christmas card list.

Take care,

Love Mo

[sandraW]

Thanks for the catch up Mo I have missed your posts, glad to hear Peter is doing so well, hope Bo is well too, take care love sandrax xx

[Veema]

I've missed you too...you need to Facebook...we can talk all the drivel in the world on there.

Pleased that Peter is coping well...it was bananas and napolina tomatoes I told you he had to eat...God for potassium and neutrophils.

Vx

[yanina]

Hi firstly I'd like to say hi to every one - I'm Nina.

We had the devastating news on Wednesday that my dad has pancreatic cancer which has spread to the liver, lungs and lining of the stomach. As you can imagine our lives have been turned up side down.

They have said they can only try chemo to prolong life at a mild dose. Next week, he's going for a biopsy. They might have said what it was to determine, but I didn't hear the answer.

Right - a bit about my dad. His names Bill, he is 70. He's worked all his life. Very very fit and healthy man. In 1997 he had a heart attack had a bypass. Got over that and again led a very fit and healthy life until 8 weeks ago when he became ill. He's had his own garden allotment for 40+ years and always had dogs so always walked for miles with them. He had 3 kids altogether my self and 2 brothers, and 3 grandsons. We're all coping in different ways. I have to and need to be strong for my 2 sons (name removed - moderator) - he is 26 and (name removed - moderator) - he is 14.

I realise whats happening and know whats going to happen, so I'm being the hard person. This is my coping strategy. This I think I learnt from working in care homes for 20+ years when i was younger. My mums not coping well, not eating, not looking after her self. She's still in shock I think. I'm looking forward to getting to know you all.

Take care

Nina xxxx

[Veema]

Hi Nina...you might want to start your own thread then things don't get confused with your story and Mo's...

Sorry to hear about your Dad...he's got it exactly where my husband had it just before he died. I hope they can try treatment if that's what he wants. Watch out for fluid build up in his abdomen as we were told it was the liver mets and the spread to the lining of the abdomen which caused this in my husband and it was very uncomfortable.

Whatever your Dad decides, we'll be here for you all the way, but don't think he's giving up if he decides on no treatment...it may well be more about quality of life now rather than quantity. Get the palliative care team on board if you haven't already as they will be a huge help.

Much love

Vx

[Justamo]

Hello Nina - I've started a thread for you and called it Nina's Dad. You are going to get loads of new friends on here very quickly, and it's better to have your own thread so that people can find you. I am going to copy your original message on to 'your' thread for you so we all know where we are.

I sent you a long reply this afternoon, but it disappeared !

Welcome to Planet PC, we all wish we weren't here, but thank goodness we've got each other.

More later

Love, Mo

[Justamo]

I can't believe that it's a week since I typed out some random and incoherent nonsense. I'm all over the place at the moment, no routine, no method, just catching things before they land. Like My Patient using the wrong insulin on Monday night . . . I was really tired on Monday so treated myself to an early night with the proviso that I would do Peter's blood at 22.30. But Peter decided to save me the bother and did his own blood, just like a grown-up, and then used the wrong insulin - the rapid stuff instead of the slow release stuff. Fortunately, he told me, so I made him eat a sandwich and then set the alarm for 01.30 to check his blood again. At 01.30 his blood was 3.3, so he was having a hypo and the jelly babies got a bit of a bashing and I stuffed biscuits into him before setting the alarm for 04.30 for another check. All was well at 04.30 but it was quite a busy night one way and another.

Then he went for chemo yesterday and I dropped him off at the MacMillan Suite at 10.30 for his 11.00 appointment and went off to the gym where we were having an aquarobics class + tea and buns because it's Christmas (in case you hadn't noticed). I went back to the hospital at 13.00 expecting treatment to be almost over, to find Peter reading Womans Weekly and eating a stale cheese and tomato sandwich, unsullied by toxic waste. It seems that the lab tested his blood and decided to do a 'film' of it (No, not The Curse of Dracula's Mummy Part 2, another sort of film) so it was taking longer. And then, apparently, the machine doing all this clever stuff broke, and they had to Get A Man In To Fix it. Finally, at 14.30, a very sweet nurse came and told us that Peter's blood was not up to scratch so chemo was cancelled for this time.

So we were thrown out as Peter was not a suitable candidate for their precious toxic waste, and we immediately saw the advantage of this because it means he will spend Christmas unaffected by chemo fatigue or nausea. We see Dr Feelgood on 3rd January and have a chemo appointment for 4th January so our diary for 2017 has some writing in it already.

Speaking of diaries, I saw the Benefits Advisor at the MacMillan CAB office today. Nice man, thinks we have a valid claim, and is completing the forms for us. He asked me about dates so I went to my diary, and it's a revelation really. For the first half of this year it was full of words like 'Open' (meaning unlock church and prepare altar for mass), or 'Minister' (meaning on duty as Eucharistic Minister), or 'Class' (meaning a gym or aerobics or aquarobics class), and now it's full of words like 'GP' or 'Surge' or 'Oscopy' or 'Chemo'. Sometimes there's more than one of them on the same line. Astonishing when you think how this wretched illness quite literally changes lives. It's taken over ours. If I had still been working I would have had to have stopped, if you see what I mean. And I swear I work a damn sight harder not working than working. I just don't get paid for it.

I've done the Christmas shopping, more or less, just the three of us this year, Peter and Boris and me. Four if you count Storm Barbara which is scheduled for Christmas Eve. The presents are wrapped, Boris has been told a thousand times that "Santa doesn't come to bad cats", and we're all looking forward to missing the Queen's Speech (Gawd Bless Yer Mum) again. It's snowing at the moment but we've been promised a heatwave for Christmas Day followed by another storm so I hope there's plenty on the telly.

Take care

Love Mo

[Guest]

Hi Mo, Merry Christmas to you!

I am so glad you have put your claim in with MacMillan, I try to encourage everyone to do it. Once you have a PC diagnosis you are automatically entitled to a form DS1500 and attendance allowance at the top rate, such is the states view of life expectancy. I asked our nurse what happens if you do survive more than a year and she said they just fill it in again! She says she has filled them in two or three or more times in the past

Also really glad that Peter is enjoying himself and doing stuff that he likes, good for him. Sadly this sometimes means that you don't get to do stuff that you enjoy. I really think that you need to get a trusty trained up to do his bloods and keep him company or take him to Chemo so you can swim. It will pay dividends in the future to have someone Peter knows and likes…

Your posts are always a tonic darling Mo but please don't feel you have to post. Do you Facebook?

Much love to you both and best wishes for a very happy Christmas.

M xx

[Justamo]

Thanks Marmalade; I don't Face or Tweet because I don't have a smart phone, just a tablet and a PC. Plus I don't really want to, although I can see the attraction of social media.

I've just been up to Tesco to get last minute stuff (Napolina tomatoes mostly) and the Sally Army were in the Crockery and Glass aisle tootling away on their trumpets and all of a sudden it felt like Christmas. Lovely.

I think Storm Barbara is about to hit us between the eyes, there's snow all around us, but we're all tucked up in bed and cosy. And meantime the Sally Army have popped their trumpets away and are busy doing a soup run for the local homeless and calmly dispensing cheer and chicken soup in this dreadful weather. There are some very good people in this world of terrorism and random killings and inequality. They just don't make headlines so we forget about them.

I'm getting maudlin now so I'll shut up.

Night folks, take care

Love Mo

[Elaine123]

There is always something I can identify with in every post. I couldn't believe it when you mentioned your diary because being near new year I am carrying about two diaries in my bag and believe it or not I already have two appointments on same line for early Jan for Pete.

you are so right there is no time for ourselves and if I do go out or arrange to meet a friend for coffee I am plagued with guilt and very aware that Pete is left at home on his own. I wish you both and Boris a merry Xmas and loads of good news in 2017

Elaine

[Veema]

Mo...I find facebook much easier on the PC, but do use it on my tablet too...I don't tweet, I just don't get it.

You could get yourself a facebook account and just add those of us on here...we often have little late night chats about random stuff...go on...just do it.

Bloods are a nightmare...Nige often had low calcium, potassium or sodium, but his bloods were taken the day before from his line and when they retested them on the chemo unit, they were generally fine.

I did a lot of juicing when Nige was having chemo and I'm convinced that this helped. Mango, pineapple, banana, kale and spinach, along with some coconut or almond milk and a handful of nuts and seeds...you really can't taste the spinach or kale and you can chuck a spoonful of coconut oil or peanut butter in too to get the calories up. In fact, it was when he refused the juices that the cancer spread...coincidence maybe, but there are lots of opinions on juicing and the benefits.

Have a lovely christmas

Vx

[Justamo]

I'm thinking of forum members who are spending Christmas without loved ones. I hope you can find peace and serenity at this time.

Christmas here will be extra special - it may be our last one together.

Hope you all have a peaceful day today.

Much love

Mo

X

[Veema]

And it might not be...

But I hope you're having a lovely christmas anyway...we've had a really nice day, no tears, Phoebe's been brilliant, loved all her pressies and we've been to my mum's for dinner.

Shattered now and off to bed shortly.

Vx

[Dandygal76]

Hi Mo,

I am glad you survived storm Barbara and I hope you had a lovely Christmas. It is all rather bitter sweet isn't it?

I have only recently got a smart phone but I do not use it for FB. I only go on these sites when on my laptop mainly. I know what you are saying re not wanting to join social media but I would just like to add in that there is some great support for you out there in that ethos. I know people who have a facebook account etc and only have 10 friends so you can keep it real and very personal if you are strict with yourself and ruthless with how you manage it. For me, we have a cover of 150 people before inviting friend to events and so it is a great way to keep in contact with family.

I am sorry I have not been on here to support everyone but with dad's scan the week before Christmas and all the events around that I purposely stayed away. Advice and support from me in the wrong frame of mind is not the best advice and support I can give.

i know it is hard to get a new routine around everything but you must take care of yourself and keep your gym attendance and aquarobics up! I am sure they are fleecing you for loads on money for the privilege.

I am sorry Peter's treatment was cancelled but I hope you did have a lovely Christmas and are all ready for renewed treatment next week? Out of interest, why no treatment this week? Just my usual NHS inquiries around this so you don't have to answer!

Their food is terrible, mum tends to use it as an excuse every week to get a lunch out in London. We all went for a second opinion with Prof last week and me and my sister managed to blag a free lunch out of dad as well which was rather nice.

You most certainly have a valid PIP / attendance allowance claim and I hope it has all been sorted for you but if not just call them up and they will guide you though it. And yes... the diary changes are hard. Sometimes I just scream in my head I want my life back... cancer seems to take over EVERYTHING. But we managed to keep to our promise this year of no cancer talk on Christmas day. Well actually we nearly did until I found out yesterday that mum (who was a tad tipsy) broke down in the cab on the way home and kept going to my sister 'look at him... why did this happen to him' apparently like he was not sat in the front seat! I am sure it was not pretty but my sister said she kept trying to distract her with useless crap conversation. So.. we nearly made it.

I hope Boris was a good cat and that Santa did come for him. I think he has had to endure an awful lot these last few months and so he has mitigating circumstances for any naughtiness.

We didn't watch the Queen's speech... did we miss anything? Unless she was announcing a cure for PC I am not really bothered myself.

I will be updating my thread in 'just a mo' (Ha ha ha... I know I am hilarious!). A lot of news but I am still waiting on some MRCP results that we expected 23rd Dec.

DG xxx

[Justamo]

Hope everybody is OK and, as we say in this part of the world, A Guid New Year to all of you.

Love, Mo

[Guest]

And to you too my lovely!

Hope you had a couple of G&Ts. I've gone rights off the drink but am true to my word and having a duvet day.

Hugs and quiches to you both xxxx

[Dandygal76]

Happy happy happy New Year Mo. I miss your postings even if I do not always respond... I now have a large pool from various sources to respond to and point in various directions (sorry PCUK if you have increased calls!). But I am here and always following you and the moment you need help with anything we will be right here. I hope you are both doing well. Stay strong my lovely. x

[Justamo]

Mission Control calling Planet PC. Is there anybody there ?

You may have noticed that I haven't posted lately. It's because nothing desperately interesting has happened. Not that that's ever stopped me from writing 1000 words before, but our personal roller coaster seems to have ground to a halt at a halfway point. Nothing to report, nothing to cry about, except for the cat joining the sick list (more later) and no extreme weather to talk about. And when I read other forum members' sad news I just shut my eyes and pretend it's not happening. 'Whistling in the dark' as my nanny used to say.

Peter had chemo last Wednesday (4th Jan) and all being well will have it again next Wednesday (11th) That will be his third cycle completed. We saw Dr Feelgood on 3rd January, he is fatter and shinier than ever and beaming with good humour. Lovely man. Apart from some fatigue and a touch of nausea there have been no side effects. Although, as I said to a friend yesterday, it's quite hard to tell with Peter if he's really suffering from fatigue or if it's just Neanderthal Syndrome. Although he pretends to be Cool and On Trend, Peter, like a lot of men his age, thinks that women should do all the nitty gritty while he relaxes in his chair. "You get on with the ironing dear, and I'll go and find the Arc of the Covenant and kill a few dragons on the way". So having his bottom welded to a chair is his default setting and doesn't necessarily mean that he's fatigued. His appetite is good, he enjoyed Christmas, and has gained more weight. So have I.

My routine has vanished. A friend rang and suggested a cuppa after swimming on Monday, and before I could say "Yes, but..." she said "Yes, I know, I'll see you if you don't have a drama to deal with". Really have to get back to regular exercise, I'm aching from head to foot and refuse to go down the strong painkiller route again. And I'm so FAT. Disgusting. Now I am facing the cold light of January I cannot ignore the bulging waistbands and straining zips any longer. And I'm tired of big meals. This evening Peter had a cheese and ham toastie with grilled pineapple, and I had the grilled pineapple on its own. Lovely. So why could I kill for a McDonalds or a KFC right now ? It's all in the mind, Mo, all in the mind.

Boris has been poorly. He is sensitive to the protein in chicken which makes his skin itch. So he licks it. Which makes it sore, so he licks it some more. And then he gets a really sore patch, all raw and weepy which requires antibiotics. I am very strict about keeping him on his prescription diet but of course over Christmas he had all sorts of treats - turkey, cream, cheese. This has resulted in some frenzied licking so he was packed, protesting, off to the Vet. She shoved a couple of needles into his neck (a steroid and a broad-spectrum antibiotic) and gave me a short lecture entitled Sticking To A Prescription Diet. So Boo and I came home feeling stupid but not licking our wounds. He seems OK again now and is currently racing up and down the stairs doing Carpet Wrecking.

Peter is doing Watching Telly, I have just done cleaning up the glitter from a card-designing session (featuring Omar Sharif and blue roses for a 90th Birthday. Yes blue. No, I don't know why either) and now I'm doing Typing Nonsense so I'll stop and start doing Going To Bed instead.

So the Good News is that there's no Bad News, which is just fine. Another happyish day. Thank God.

Take care all of you.

Love, Mo

[Elaine123]

Aw Mo thank you for that post , I am sitting here at 7am after being up since 5am as Pete coughed all night and was so restless and I was wondering what drama today will bring and whether Pete will eat anything and whether the torrential rain will allow me to put the bins out for the bin lorry coming round without getting soaked to the skin. And then I read your post and was immediately transported into your day and it cheered me up no end. I am one of those people who do not go off food when I am worried in fact I constantly have to shovel everything and anything down my throat to deal with each problem as it arises. I am so happy you are having a lull at the moment and that Peter is feeling good. Your post has restored a bit of feel good factor in me and I am off to do the bins rain or no rain. Glad also Boris is over his Xmas binge eating. Take care

Elaine

X

[Guest]

PW and I reckon we could be as much as 9st overweight now

Hope you both have a good day - I'm off to show some elderly people with special needs how we make traditional teddy bears…I have a very varied life.

God bless you all Mo, Elaine and two Peters and give you a dramaless day xxx

[Dandygal76]

Well hello stranger! I have had to buy myself a book without your posts!

I am glad you two are ticking along... it really is amazing when you reach that new 'normal' that you never thought would happen in a million years.

Poor Boris as well... all this Christmas overindulgence is not good at all. I was watching my lot still eating all the rubbish last night and so I have tipped everything into a carrier bag to take to work for them to eat. Enough is enough. I have been good myself, definitely 5k now and no couch.

Has Peter had a scan yet? I saw a great post the other day (I wish we could put pictures up on here) of the next dilemma you may face which was aptly called 'Scaniety'. I am sure no one has noticed I go a bit mental around them. I was thinking he must be near scan time by now? Sorry to poke my nose in but you know me... I follow you all with great interest.

Also, there is always time for tea with a friend. I am amazed how well our patients get on when they HAVE to do it for themselves. Sometimes I think they may be allergic to us and we are causing the symptoms.

xx

[Justamo]

I forgot to say in my last post that my cousin is having 'modified' chemotherapy and is feeling fine - or at least much better than she was. I have been scared to phone because she felt so awful, and reported severe pain in her spine and was awaiting a CAT scan in case it had gone into her bones.

She rang me on Sunday sounding very perky, to say that her back pain was only arthritis, and that the oesophagal cancer hadn't spread to her bones. She has mets in both lungs and her throat sometimes goes into spasm and she can't swallow her food and has lost weight. Since the chemo started she hasn't had any throat spasms and has managed to regain some weight. She really sounded like her old self again and is having friends to stay and getting out and about. She is taking part in a trial which offers chemo to patients who can't take the conventional dose because of heart or other problems. It's a double-blind trial, so she could be on anything from 0% to 70%. It might be a case of chalking up a victory for placebos, but who cares if she's feeling brighter.

I don't suppose the roller coaster will stay at the top of the cycle for very well but she and her partner are making the most of it. Thank God.

Take care

Love, Mo

[sandraW]

That's great news Mo, I know some people don't advocate chemotherapy in theses case but everyone is so different, if it helps with the symptoms then it's a good thing to carry on if its makes people feel worse then that's might be the time to consider stopping. Lets hope you cousin is on the 70% and she gets some good results. Glad to hear Peter and Boris are doing okay too take care sandrax xx

[Dandygal76]

That is good to hear Mo. It is a worry for them when they get pains for other reasons because it is natural to think it is the cancer. I am glad they have found some positive space and respite. x

[Veema]

Lovely to hear from you Mo...I'm another comfort eater and have put on several stones since Nige died (not just stones, but big, huge boulders).

So pleased Peter is doing ok...hope it continues.

Vx