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Justamo
Posts: 400
Joined: Sun Sep 04, 2016 9:38 pm

Re: Thanks for sharing your experiences . . .

Postby Justamo » Fri Oct 06, 2017 7:07 pm

To the right of this 'reply' box as I type there is a section called 'Smilies'. I can't see one sad enough to use, so I'll not bother.

It has been a ghastly week. I'll not bother you with all the tiny details (there are hundreds), but I'll pick a few at random to show you how things have gone.

Peter can't (for various reasons) eat. So I asked his GP (over the phone) for some Fortisip, and helped to spell vanilla while he typed out the prescription. Then I went to get the prescription. "Not here", said the Receptionist. I asked her to check again, because I almost heard the thing printing while I was on the phone, so she flounced off and immediately flounced back again. "No. Not here", she said. And in case I hadn't understood she repeated, "There. Is. Not. A. Prescription. For. Him". So I asked to speak to somebody else. "They're all in a meeting", she said triumphantly. Why does everything have to turn into a pigging confrontation ? Is it just me ? So I went to the pharmacy and bought some for £10.75. It was either that or let My Patient starve.

He started his radiotherapy on Monday at 14.42. At 15.42 he was leaning over the loo, ashen, and vomiting everything he hadn't eaten, especially painkillers and water. We had a repeat performance at half hourly intervals all evening. The level of the pain matched the violence of the vomiting and he paced about, sat up, laid down and then paced some more until he went to sleep way after midnight.

On Tuesday morning he couldn't face breakfast so I produced a Fortisip and it went down and stayed down. His blood sugar was low, so I adjusted the insulin a bit and e-mailed the Diabetes Nurse to check that I'd done the right thing. We had a repeat performance of the vomiting and pain, all of the above, and general misery reigned. Same again on Wednesday.
Of course I had phoned his GP and asked for help, and the MacMillan nurse had made a visit too, and the anti-sickness drugs were changed, and I ordered some acupressure bands from Amazon - when stressed I do not turn to counselling, I turn to Amazon instead.

By Thursday things were dire, so I attended the RT clinic with him instead of waiting outside in the car and spoke to his nurse. Immediately, things started to happen. People with clipboards whizzed about, questions were asked, keyboards tapped, printouts rattled off the printer and then we were led away to the Oncology clinic where - like magic, but without flashes and bangs - Dr Feelgood appeared. Radiotherapy was cancelled for the day. Steroids were prescribed. Very special anti-emetics were ordered, both pills and via a drip. Favourite nurses led My Patient away and popped him into a comfy chair and shoved needles into both arms - he was very dehydrated - and My Patient celebrated by having a whopping great big hypo. Fortunately I had his special little bag with me and it was collected with ceremony by the Charge Nurse and sugar lumps were administered, with a granola bar for dessert.

Then, smugly wrapped up in a blanket, Peter was wheel-chaired away for an X-Ray, and in due course was handed back to me visibly plumper with all the fluid, and much more comfortable. By now we had been in the hospital for over 5 hours and I was almost a wheelchair case myself. But we drove home, armed with all sorts of pills and potions and my hastily scribbled notes, and the sickness abated slightly (although the nausea didn't) but the pain increased.

Today he completed his RT without throwing up. And he asked for and ate Prawn Fried Rice for his supper. Both he and Boris enjoyed it.

I have now got a prescription for Fortisip. And if I feed him on that I will save on the housekeeping money, so I might spend the excess on gin. Now we've got two days off, so I hope the pills work and the sickness is held at bay. The steroids are making his blood sugar leap about all over the place but I'll just adjust the insulin as best I can and so long as it doesn't disappear round his ankles it's OK by me. At present he is arguing with the TV and Boris is helping him. There is wet washing draped all over the house and I really don't care. His pain relief is relieving pain instead of vanishing down the loo, so I hope we can have a quiet evening.

Sorry to drone on, I know you've all been through this sort of thing, but we've had it relatively easy for almost a year so the hard stuff really hits hard. Have to stop now and get back to Amazon.

Love Mo.

Quickasyoucan
Posts: 93
Joined: Tue Jan 17, 2017 10:06 pm

Re: Thanks for sharing your experiences . . .

Postby Quickasyoucan » Sun Oct 08, 2017 8:59 am

Mo sending you all my good thoughts from oz. steroids really helped dad with appetite. I hope they do the same for Peter. Xxx

Wife&Mum
Posts: 384
Joined: Thu Dec 03, 2015 3:12 pm

Re: Thanks for sharing your experiences . . .

Postby Wife&Mum » Sun Oct 08, 2017 10:49 am

Dear Mo
What a hard week you've had, poor Peter, poor you!
I am sending masses of positive thoughts and good wishes your way for this to be a much kinder week all round.
W&M xx

Justamo
Posts: 400
Joined: Sun Sep 04, 2016 9:38 pm

Re: Thanks for sharing your experiences . . .

Postby Justamo » Sun Oct 08, 2017 5:08 pm

Hello WaM and Quickly, nice to hear from you. Yes, it's been a pretty dire week, but true to the roller-coaster nature of Planet PC today everything is just lovely.

The steroids have kicked in.

This morning he wanted to go and play 18 holes of golf. I suggested that he cut the the larger of the two lawns instead, so his enthusiasm for physical activity diminished markedly. His blood sugar is coming out of the top of his head, despite me taking our DN at his word and juggling the insulin dose but the important thing is that he feels comfortable and breaks the treatment/vomiting cycle. He has RT tomorrow so we'll see how it goes. There were only two days of high dose steroid, today and tomorrow are slightly lower doses, and then it's lower again for the next week or so. He still didn't want breakfast this morning so he had a Fortisip instead which is good because it means I can spend the money saved on gin, but he did eat two eggs and some hash browns at lunchtime. My poor mother would be turning in her grave at the thought of Sunday without a proper roast dinner, but Nanny would be pleased that he 'ate it all up nicely'.

I have cancelled my trip to London for Joan's memorial service. Ten days ago My Patient gave himself the wrong insulin at night, and two days later he forgot to use any insulin at all, so I think it's best that I stay at home and play Bad Cop instead of leaving him Home Alone. I don't mind too much (except that I can't get the hotel or flight money back). I would have been desperately worried and/or guilty if I had gone, and I was with Joan when it mattered - when she was diagnosed, and while she was in the hospice. And of course at her truly beautiful and completely appropriate funeral. I had a long chat with her partner on the phone the other evening and she understands the problem only too well.

Just to wander off the subject of PC for a moment: I was invited to take a table at a local school's Christmas Crafte Fayre. I avoid Crafte Fayres like the plague because they are full of crocheted lavatory-roll holders, but they must have got me at a weak moment. All the time Peter has been in his sick-bed I've been beavering away in my study on a red-hot sewing machine. It started with tote bags. Then purses. Then sunglass cases. One Christmas the fairy on our Christmas tree fell apart, and not having a spare doll to hand I dressed a small teddy bear up in a glittery frock, some wings, and a wand. She gathered some admirers so now I've made a dozen Fairy Teddies. They are heavily influenced by Strictly, and no two are the same, so I'm waiting for a bitchy fight to break out in the box where they are safely stored awaiting sale. Today I have made a dozen little fabric covered notebooks, all patchworky and a bit funky and glittery. Yesterday some purse frames were delivered so I'll start on those next week.

I'm keeping my fingers crossed that next week's treatment goes a bit more smoothly than last week's. Hope I haven't bored you too much with this outpouring, the cat goes to sleep if I keep on about it at home . . . . .

love, Mo

Wife&Mum
Posts: 384
Joined: Thu Dec 03, 2015 3:12 pm

Re: Thanks for sharing your experiences . . .

Postby Wife&Mum » Mon Oct 09, 2017 10:49 am

Mo,

I think your Crafte Fayre table will be the star of the show so long as the Fairy Teddies behave themselves. Give them a good talking to first, or maybe some of your gin to calm their nerves.

Hoping for many many more lovely days for you, Peter and Boris.

W&M xx

Sandiemac
Posts: 58
Joined: Tue May 10, 2016 10:27 am

Re: Thanks for sharing your experiences . . .

Postby Sandiemac » Mon Oct 09, 2017 1:19 pm

Oh Mo, I really feel for you. One day at a time, pet.
Yes, gin is an EXCELLENT idea! Or wine.

Love
Sandie xx

Dandygal76
Posts: 718
Joined: Sat Mar 12, 2016 9:49 am

Re: Thanks for sharing your experiences . . .

Postby Dandygal76 » Mon Oct 16, 2017 5:09 am

Hey Mo

My wacky friend gave up her job in exchange for doing all sorts of crafty things with rags and leftovers of all sorts. She makes a fortune now so perhaps there is potential in it all. I would love to order a Christmas teddy - how novel.

I am sorry that Peter was unwell previously. The hospitals are far better at dealing with things. As I have said before we were lucky with our GP surgery because we know them personally and mum worked there. It is a large surgery catering for many villages and have practices elsewhere and they closed for my dad's funeral. But it does go to show they can be responsive and not what you experienced because they would have moved heaven and earth to make sure dad was not ill. I do truly believe they would do that for all their patients though. Do you not have an emergency number from the hospital for issues around RT. I know they do it for chemo so I am not sure but if I were you I would just raise merry hell next time straight away. I know how horrible it is to see them like that, I actually got to the point one time I was going to buy fluids for my dad through an online agency but it was about £800. He had all the medical help but could not overcome the symptoms and it seems to be a no no to give fluids at home which I find stupid. In the end we took him to A & E which was always a hell of a fight with dad but within 30 minutes of fluids he was a new man. This was when he was dire starting the chemo routine. I don't get how hard it is to get fluids and nutrition into someone fighting cancer. It was one of the things I even had to fight constantly with dads last hospital stay when he was so poorly but after I done my usual bedside routine of e-mailing PALs and other managers he did get them. Even then every time I turned up they had given him some drug or another and disconnected it and no one bothered to put it back in. My angel Cancer Clinic Manager was mortified and kicked some butt. It is a basic human right to me unless there are medical reasons not to give it and dad was certainly happier and more rested with it.

As for the blood sugars around steroids - this is a nightmare we have all endured and I don't think you will find a solution. We got to the point that as long as it was under 13 in the morning then so be it and the trial doctors agreed. Any long term damage from high blood sugar is inconsequential - sorry to be a bit blunt but eyesight issues and cutting a limb off is the least of the worries. I would not fret so much over it all unless he displays symptoms at certain levels.

I hope you and Boris are okay. There are lots of big cyber hugs from me. Peter has done so so well and we are all grateful for that. xxx

Justamo
Posts: 400
Joined: Sun Sep 04, 2016 9:38 pm

Re: Thanks for sharing your experiences . . .

Postby Justamo » Mon Oct 16, 2017 11:16 pm

Hey DG, thanks for that. Last week wasn't too bad really. The anti-sickness drugs worked inasmuch as he didn't actually throw up, and the steroids picked him up no end. The artificial appetite subsided after a day or two, but we have the Fortisip - which he says he likes - doesn't say much for my cooking, does it ? He has lost a few pounds, about 6lbs since a week or so before the radiotherapy started, and he's quite pleased about that because his clothes aren't so tight. Today was the final radiotherapy treatment and the fatigue is quite apparent. He hasn't stayed up with the grownups for quite a few nights now, and while I'm sewing in my study he's fast asleep with the TV blaring out something violent and noisy in his room. And Boris is tucked up cosily with him. I'm not entirely happy about Boris watching these programmes but he doesn't seem to be suffering any ill effects.

We have been trudging down this path for over a year now, and we have only just been given a MacMillan nurse. In fairness, we haven't needed one because we were coping OK, but since things won't get easier it's good to know we have somebody 'on our side'. Peter's GP is a nice guy, and it's usually possible to talk to one of the GPs at the practice if you phone with an urgent problem. I saw a counsellor at the hospice last week and despite my preferring to write rather than talk I found her kind and receptive and adept at bouncing stuff back to me. I am aware that I have been grieving since a month before the official diagnosis because I had a very shrewd idea about what was actually wrong with Peter. I am also aware that I should be helping him make the best of every day. It's also been hard dealing with his complete denial and attitude of 'when I get better'.

I'm quite solitary by nature (yes, I know I'm going to regret saying that), and I've found it hard to be a Siamese twin for the past fortnight. I feel as though I've been glued to Peter's side 24/7 and I would quite like a day off from cancer. And I feel wracked with guilt for even thinking that. Last week we had 8 medical appointments, and today there were three letters with more appointments: Dr Feelgood, Eye Clinic, and the annual Diabetes review. (He had mild Type 2 controlled by diet before any of this started).

My stepson phoned me yesterday to tell me all about his own medical problems. He didn't even ask about his dad until I raised the subject, and all he said was, "Oh, he'll be OK".

Reading this through it all sounds rather negative. But it's hard to be gung-ho and radiantly positive all of the time. I think I'm allowed to swear and kick the furniture occasionally, but instead of kicking furniture I've been stuffing bunnies and teddies and making pigging tote bags and butcher aprons. It's either stuffing a bunny or taking to strong drink. At least I haven't started smoking again,

Time to go to bed I think ! It's good to let off steam on here sometimes. Is there anybody old enough to remember Patience Strong ? She used to write inspirational verses which were printed within a flower garland and she had a strong following among the Woman's Weekly brigade. Well, my thoughts today couldn't be printed on a lilac background and garnished with violets. Splashy graffiti on a brick wall would be more suitable. (Is it one F and two Ts ? Or the other way round ?)

Enough.
God bless
Mo

Quickasyoucan
Posts: 93
Joined: Tue Jan 17, 2017 10:06 pm

Re: Thanks for sharing your experiences . . .

Postby Quickasyoucan » Tue Oct 17, 2017 10:16 am

Mo your vents are a tonic. I know that's a strange thing to say but I'm pretty sure we all enjoy hearing from you. So vent away as blue as you like.
Am glad Boris is "supporting" Peter albeit whilst watching the inside of his eyelids!
Dad's dog George is going strong. my sister posted a lovely spaniel smiling pic of him the other day. I hope that brings some cheer to you too. Animals are heaven sent.
We are all with you. :-)

Sandiemac
Posts: 58
Joined: Tue May 10, 2016 10:27 am

Re: Thanks for sharing your experiences . . .

Postby Sandiemac » Tue Oct 17, 2017 10:22 am

Yes, I remember Patience Strong. Bit too wishy-washy for me. Sounds like it's time for some me-time for you. Can you not leave Peter and have a spa day (or half day). Does your local hospice run what I used to call the playgroup where "people with life-limiting illnesses" can meet, socialise, have lunch and NOT talk about their illnesses. I know Stephen thoroughly enjoyed it.

Make use of your Macmillan nurses. They are a tower of strength. They can act as intermediaries for you with medical people, get equipment in you might need, and just have your back.

Cancel the diabetic clinic and eye test appointments. You (and Peter) don't need the time and effort it will take and they are not important in the great scheme of things.

You can do this, kid. You are strong.

Love, Sandie xx

Veema
Posts: 371
Joined: Mon Feb 02, 2015 5:35 pm

Re: Thanks for sharing your experiences . . .

Postby Veema » Tue Oct 17, 2017 12:09 pm

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

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

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

Vx

AndAde
Posts: 20
Joined: Thu May 18, 2017 7:51 pm

Re: Thanks for sharing your experiences . . .

Postby AndAde » Tue Oct 17, 2017 8:01 pm

Hello Mo,

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

Thinking of you xx

AndAde
Posts: 20
Joined: Thu May 18, 2017 7:51 pm

Re: Thanks for sharing your experiences . . .

Postby AndAde » Tue Oct 17, 2017 8:03 pm

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

sandraW
Posts: 997
Joined: Thu Oct 31, 2013 5:38 pm

Re: Thanks for sharing your experiences . . .

Postby sandraW » Wed Oct 18, 2017 3:53 pm

Mo, your letting off steam is just as interesting as when you doing your usual posting, please be sure we all love reading it, even though we do all feel for you.
I know what you mean about the complete denial, been there and done that, its certainly not easy. And as for having a day off from cancer, perhaps now the RT is finished, Peter will feel a bit better and while not up to 18 rounds perhaps things will get a bit more on an even keel and
he can get out and about a bit more and give you a bit of respite.
All you teddies and bags sound amazing, at least its stopped you from smoking, not sure about the gin though.
As for the step son I do think they find it hard to accept that they might loose a parent, I know both our sons struggled to come to terms with the fact, that they were loosing their Dad, kids tend to think us parents are indestructible.
Just be careful when kicking the furniture, I remember once banging a pan full of cold stew down very force ably, when in a strop one day, stew in you hair is not a good look I can assure you. please take care and I am sure the crafty thing will go very well, love sandrax xx

Justamo
Posts: 400
Joined: Sun Sep 04, 2016 9:38 pm

Re: Thanks for sharing your experiences . . .

Postby Justamo » Thu Oct 19, 2017 10:23 pm

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

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

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

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

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

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

God Bless,
Mo