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Post by jljenkyns on Sept 5, 2008 21:36:58 GMT 1
No problem philippa. Great news sound like the tarceva is working already. Ask you onc for some Docecycline this does help the itch a lot and keeps away the rash.
jim
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Post by phillipa on Sept 5, 2008 21:45:56 GMT 1
Thank you Jim, I will ask for this on Monday when Kent goes for his check up. I have bought L'Oreal 24 hour moisturisers as recommended. I am starting to stock pile it.
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Post by jljenkyns on Sept 6, 2008 10:20:52 GMT 1
No problem, L`Oreal is the one i use but i have found others to be just as effective and cheaper.
jim
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Post by phillipa on Sept 10, 2008 12:10:55 GMT 1
I hate these wrinkles in the face of life. One Bung Lung started to feel ill on Friday, but we thought it was glitch to do with the radiotherapy to his leg. it passed over the weekend and Monday, off to see his favourite Oncologist and I noticed his eyes were yellowing. he was off his food and complaining of pain.
Off the Tarceva and a blood test done. Get rung at 6pm, the Amylase is rising fast, so looks like CT scan and stent replacement, it muyst be blocked. Hugo F moved so fast, get a call from endoscopists registrar, checking details and how soon can I fget him in the hospital, I am under the shower taking this call. Half an hour later we are at the Treatment Unit, they are expecting us. 12noon new insterted, this time a brand shiny metal one, the could not remove the plastic one whch had become overgrown with the tumour. Bile started to drain immediately and yellow is already disappearing, Obi is eating again and looking better. So tomorrow seeing Hugo F tomorrow and checking amylase count. Poor Obi, he is starting to itch and he has only missed two doses of Tarceva. Still complainng about his leg; we have been told it will be three weeks before we know if is successful with the radiotherapy, so another week and a half to go. To compound matters, they need him back at work urgently. Manning levels now critical, as one colleague had been injured severely in a motor vehical accident. They don't think he will be returning to work at all. So being two men down has placed Air traffic control in a parlous state. Teeny Weeny Airways might not be able to fly ut of the base. Ho hum, nothing like a bit of pressure. had to cancel our four day break starting tomorrow. it seems everytime I try to plan a weekend away, somethng goes wrong. Feeling sorry for myself? You bettcha. You would think Obi would be more considerate. Onwards and upwards
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Post by jljenkyns on Sept 10, 2008 20:44:27 GMT 1
Bloody hell phillipa
i often wonder how you both manage to get through the day, one step forward and 3 backwards. i hope everything picks up soon.
jim
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Post by Deanne Jenkyns on Sept 10, 2008 20:57:02 GMT 1
Hi Phillipa, Been reading what you have both been through over the months and my heart goes out to you both. Jimmy has been keeping me informed about the boards, I am running my own business full time and also juggling this with college, I do keep coming on daily and reading the posts and try to keep up to date with everything as much as possible. I hope that things improve soon, you two really are an inspiration! Sending ((((hugs))))
Deanne xxx
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Post by phillipa on Sept 11, 2008 7:06:21 GMT 1
Thank you Deanne. You are certainly busy these days. Keeping all the balls in the air requires good time management, been there done that have the T-shirt. I am not too sure who is the inspiration,. I always tease Hugo Ford with, ah but there is Daeanne and Jimmy Jenkins .
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Post by phillipa on Sept 12, 2008 8:55:21 GMT 1
Yesterday was another one of those days when things go right. three hours at papworth, but a good three hours. Saw Dr Sarah bell, Pain management SpR, and she is a breath of fresh air. She has taken Kent off all the morphine and switched him to Oxycontin and written out a pain management plan. She re-assured hi that the pain in his leg will subside fully in six weeks,. but this regime will help him cope and return to work. If this regime for pain relief does not work, she told him she has a few other things up her sleeve. The other bit I found so good, she asked me how I saw his pain. Kent did not realise it, but he wasn't dragging his leg so much and he was walking faster yesterday. She also made him seperate both pain sites and talk about them, then they were graded. Stomach 4, leg 8. It took a bit of doing her part, but she finally got him to express it. She wasn't interested in the cancer, just the pain and that made it so much better. Got a phone call at 5.45pm, tell us to restart the Tarceva, as the liver function test show things are back to normal. This is also good pyschologically for OBL. Oh bioy the rash is letting him know it is around. Doxecycine has been prescribed (thank you Jimmy) and himself is back at work on Monday with light duties doing four hour days for the next couple of weeks until he feels ready to return to full time duties. Both of us slept like logs last night.
This morning I had a clear out of the medicine cupboard and I have shopping bag of morphine medicines to be returned to the pharmacy. Such a waste, but they out of the house.
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Post by jljenkyns on Sept 13, 2008 8:47:00 GMT 1
Hi phillipa
well how things can change in a day, great news for you both. It is reassuring when you get someone in the medical profession actually onside and does care it is such a relief. glad kent is getting back to work i have said it before and i will say it again you both have amazing resolve.
jim
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Post by phillipa on Sept 13, 2008 14:28:34 GMT 1
Hi Jimmy,
You are right about how things can change in a day. yesterday kent went into withdrawal from all the morphine and he was not well. I was able to get his new regime started last night. Amazing..this morning breakfast, he had morning tea, then lunch and went around to the shop on the base and got the paper. I was having problems with my computer, he took over and got it sorted for me, something he has not done in months. he has pain in his leg, but he is walking without the walking stick and his stomach has settled, no further burping. I am so glad we met Dr Bell and kept an open mind about what she said. I am thankful our GP is prepared to go along with this and not make it awkward in prescribing the new drugs. he did remark to me last night when he phoned to check on OBI, that the PCT might have words with him about the cost, but that is something we both can address when need be. He also stated he has never had patients like the two of us, we just keep push the boundaries and proving the establishment does not know everything. So far there has been no breakthrough pain and the change in my darling is wonderful to see., Ok it's early days and we know this will never be cured. We only want quality of life and it has been restored for the moment. if this keeps up OBI may be taking the stairs to the control room in the air traffic control tower two at time on Monday. I can but dream.
It is all the members of this site, who help keep our spirits up and for every knock that one of us takes, there is someone else who has come along and taken our hand. I am hoping by sharing OBI's walk on the wild side, that a new member, who thinks it is all darkeness, I can share the lighter moments and perhaps help dispel some the worries.
Onwards and upawards
You and Deanne offered a beacon of light and hope to us. When I started researching to find out as much as I can regarding OBI's prognosis, this site stood out and I just knew it would give me further insight as to how to advance.
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Post by phillipa on Sept 14, 2008 13:03:48 GMT 1
Good thing, I can diarise on here and hopefully it will be some use to someone. Fantastic day yesterday, but then late evening pain broke through and Kent was silly enough to ignore it, so by bedtime he was in a state. For two hours he was in agony from his leg and of course he ate very little for dinner which set up a chain reaction. I was fed up with it by midnight, so made him warm ovaltine for his stomach and shoved a 400 micrograms Aciq (fentanol lozenge) at him and ordered him to suck it. Within half an hour he was asleep. he slept through until 7am until I woke him for his medication and supplements and breakfast. I took no prisoner, made him eat a bowl of yoghurt (home made of course) and a slice of fruit toast. he went back to sleep. No moaning or groaning. I took lunch up to him with coffee and he sat up as if nothing had happened. he says his leg is still very sore (it will be for another four weeks or so). I have given him another OxyNorm to help with the pain and he now watching the Grand Prix and talking about going to Tesco's. Had to remind him it was Sunday and Tesco's shut at 4pm. I doubt if I will be able to move him from his grand stand seat now. No two days are ever the same.
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Post by jljenkyns on Sept 15, 2008 5:21:52 GMT 1
Hi Phillipa
well i have done exactly the same thing as kent , ignored the pain killers because i felt o.k only to regret it later on in the day. it must be a man thing!!! lol. i am sure kent will be bounding up those stairs 2 at a time soon. yes you do push the boundries and as i have said before everyone is unique and responds and handles disease in different ways, kent is a great example, given less than 6 months to live 18 months ago tells it own story. i think your diary is a good thing it will help others going through he same thing to gain insight as to what can be achieved with resolve and determination as the both of you have shown. So often phillipa people forget about the ones who love us and are by our side 24/7 like you and deanne ,i have said it many time if it was not for the likes of you and deanne who care for us and love us 24/7 unconditionally while trying to take care of your own life is quite remarkable where would we be?? we couldnt do it without you.
jim
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Post by phillipa on Sept 16, 2008 12:35:21 GMT 1
Day two back at work. yesterday the man was not so hot in the morning, feeling nauseus, went into work, came home looking like the dog's dinner. Decided to fiddle with his medication timings and surprise surprise, things are on the up. I am not completely heartless, I give him breakfast in bed and then shove the medication down his throat. Instead of the whole lot appart fromt eh Tarceva, at the same time, I am now staging this. Last night he also felt a lot better, so hey ho, let's see if this idea works.
I am not too sure if all of this a ploy to get out the handiman jobs areound the house. I painted the garden trellis's and the storage cupboard door in full gloss black paint, then started to mow The little acre. Gave up half way through,, grass to too thick and wet. That will teach me to keep feeding it.
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Post by phillipa on Sept 19, 2008 15:01:22 GMT 1
Week One back at work completed. It's been a mixed bag really. I think the combination of changing all the medication, over to Papworth for blood tests and then a check up with our GP regarding the meds, took it's toll. The meds dosages have been increased and last night they seemed to do the trick, because this morning, for the fiorst time in three months Kent ate a full cooked breakfast. Up until now it's been bird size portions if he felt like it with intermittent decent meals. I went on the Pancreas Cancer boards and quickly got off them, they are so full of dismal writings. No cancer is picinic in the park, but the difference in the mind sets of people really does make a difference. I was surprised that the moderators on some of these sites have not stepped in to refute some of the misnomers. No one is aying how this is going to effect OBL, but let's try to put something positive into it. I haven't seen anyone on those being prescribed Tarceva. I know this is an added bonus for us, so it just mightt omprove survival chances; after all we have said quality of life not quantity.
The pain in Kent's leg is subsiding more each day. Now if I can get a bit weight back onto his frame it will be plus.
Oh I finished the little acre, it was thick and wet a couple of days ago and it's still the same today, but I have had my workout.
I must mention Georgina OBL nurse practitioner. She has rung twice this week to check up on the man and his plan to go back to work and to see how he has handled it. Without the backing of his company it would not have happened. A big thank you to Duncan and Tony.
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Post by jljenkyns on Sept 20, 2008 5:07:12 GMT 1
Phillipa
well things seem t be moving in a positive way for you both long may it continue.
jim
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Post by phillipa on Sept 24, 2008 16:41:52 GMT 1
Darn tarceva rash. Obi looks like he has a drinking problem, you know the Port nose. Have bought some new male cosmetics for him, Lab Series, after shave burn conditioner and shaving oil. Got it from John Lewis. he wont want to complain again about the cost of my beauty products.
The pain he is experiencing from the pancreas seems to be under better control. Not so many break through episodes and he is sleeping all night. No vomiting and eating more frequently. Complains of pain in his back, well he would, this happens with what is going on, and sitting in his chair for four hours without moving his skinny bum out of it doesn't help either. When we go to bed, I have a shivering skeleton lying beside me, but a good old eskimo hug soon helps that, thank goodness I have plenty padding on me. i have offered him a fat transplant, but he refuses that. This is the first week in ages we dont have a hospital or GP appointment. Oh, his four hours a day return to work regime has now gone back up to a seven hour day. I am fast losing my excuses not do housework. Even managed to do the ironing today, drats....
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Post by jljenkyns on Sept 25, 2008 12:38:16 GMT 1
Lmao
good to see thing are going well , did you get the doxecycline for the rash??
jim
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Post by phillipa on Sept 25, 2008 16:14:05 GMT 1
Yes, we have it. Kent hasn't stated to take it though. He says his tongue is also burning, did this happen to you? Stop press, he's had the first one. Bit miserable today with his sore tongue and stinging face. The after shave burn stuff, caused his face to bleed this morning, but the shaving oil was a lot easier than shaving gel.
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Post by jljenkyns on Sept 26, 2008 9:04:12 GMT 1
Hi Philippa
Not sure really i cannot remember having a burning tongue, as for the aftershave i would stay clear of that i would also use a electric razor it might be easier.
jim
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Post by phillipa on Sept 27, 2008 11:00:09 GMT 1
Will mention this to Kent. I am not sure if he has decided to grow a beard. He has the miseries today, I think it is a combination of everything. he stood on the scales this morning and weighs 59 kilos, he looks terrible. he is eating but getting him to eat more is the battle. I think it was the vomiting before the stent was inserted which causes this and I read where they the pancreatic tumour causes a fullness feeling, so I guess we have to get his head past this. The tarceva 'rash' is causing him a lot of discomfort, his words; it looks so painful.
I have joined forces with a few RNZN fellows who have developed lung cancer. Looks like I disagreeumptions in the beginning that this was occupationally related might not have been wide of the mark they have all been exposed to EM and RF radiation. Also a friend of mine MIL has developed lung cancer, to find there is Radon leakage under house. The house is built on top of an old coal mine up Sheffield way. She is a non smoker, never smoked in her life. kent grew up in that region and both his parents died from cancer, as has a few of his family members. It makes you think.
As to the weight loss, I am worried they are going to stick a naso-gastric tube down if he doesn't start maintain his weight or gain some.
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Post by phillipa on Sept 30, 2008 12:27:03 GMT 1
6kgs weigtht lost and is causing concern. Hugo F told him everything else appears alright and his chest x-ray is no worse. Ct scan in 4 weeks to see if tumours are shrinking. The bearded man look is the fashion trend in our house at the moment.
Now to try and get that weight up, even if it is only a kilo.
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Post by jljenkyns on Sept 30, 2008 18:54:05 GMT 1
that is good news what hugo f has said, i can see your concern with the weight loss , what about high protein drinks?
jim
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Post by phillipa on Oct 1, 2008 11:26:13 GMT 1
Jim, I have tried everything with Kent and this morning I am at breaking point.
He came downstairs after his shower shivering, he is literally skin an bone and I swear he has developed anorexia. He has taken to tipping food and the like down the toilet and in the bin, I let him get over his shivering and made him scrambled aggs and toast. He was carrying and put it to one side then made a fuss about it being too hot, hell it has been on one side for 20 minustes, then he makes out he is eating it. he gets up and puts in a scrap bag and denies he has thrown it away.
I spent nearly £20.00 yesterday on Calogen which will last four days.
I have two large tins of fast muscle builder, not exactly inexpensive but he is refusing to drink it now.
I decided tough is needed if we are to get through this. I refused to make his lunch for work and I tld him it's now up to him, he either eats or starves. I can do no more. Now sticking to this is ogoing to be problem for me, but I have to do something drastic, apart from packing a bag and moving in a hotel for a couple of days and leaving him to it.
I feel wretched at moment. It's like living with a child who canlt or wont be encourtaged. i don't know hat happened in the last 24 hours with his mind set.
People reading this will most probably think I am the most callous person in the world under the circamstances, but living with this now for nearly three years, trying everything, battling the NHS and trying to keep my own life on an even keel, is just too bloody hard, especuially when you don't feel well yourself. Lack of sleep and the continual worry is taking it's toll.
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Post by jljenkyns on Oct 1, 2008 19:18:40 GMT 1
Phillipa
you can only ever do so much for one person whether or not they heed the advice is up to them, i dont think anyone will think anything bad of you at all, maybe a kick up the arse is just what he needs sorry to be blunt but hey as they say you need to be cruel to be kind, unfortunatley you can tkae a horse to water ut you cannot force it to drink , must be the same with humans. you have to think about yourself as well as you are the mainstay at the moment you need and deserve to have sleep and rest although i know that will be very hard for you.
take care
jim x
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Post by rosina on Oct 1, 2008 21:39:21 GMT 1
Hi Phillipa
No one would ever think you are a callus person, you are a loving person who has looked after her partner very well, we can all see that from you posts.
It is very frustrating when someone can't or won't eat, my sister has lung desease and now heart failure and she really can't eat, she's wasting away really, but it's a physical thing she just does not have the breath or energy to eat. Quite often lung problems and other medical problems do mean that the person really can't eat or don't have the desire to eat and nothing you can do will change that.
Just keep on being there for him and try not to get too upset about it, he will eat when he can, but he won't eat when he doesn't feel like it.
Take care, and try and get some you time.
Love Rosina x
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