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Post by phillipa on Oct 2, 2008 21:20:33 GMT 1
Last night was crisis time for both of us. I was on the verge of walking out. Things happened and he has realised that it is up to him. We have been to see our supportive Gp this evening and after our session, things are back in perspective for One Bung Lung. His appetite stimulant has been increased and surprisingly he has eaten more today than he has in months. He now knows he has to get over 2000 calories a day in, a little at time, but he has to have put on at least a pound in the next week. Our GP is taking no prisoners. he checked Kent out to make sure he can swallow. Part of it turns out that his mouth is very sore from the Tarceva, so some Bonjela will help numb this down.
Dinner has been eaten and himself is dozing. he is looking better and best of all has not complained of pain anywhere to day.
From the look of the rash on his body, the Tarceva must be doing something. The little metastis on Kents hand has disappeared also
Rosina thank you for your kindness.
Jimmy tough love all the way until this resolves itself.
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Post by jljenkyns on Oct 2, 2008 22:37:03 GMT 1
well there you go ultimatums? Kent obviously has had a wake up call thank goodness. Good news about the lack of pain and yes it the more the rash the better it is working.Keep up the good work phillipa i know you will
jim xx
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Post by phillipa on Oct 3, 2008 21:42:38 GMT 1
Yippee the Calogen arrived today and I am able to get around an extra 450 calories into Kent. he can only have 3 x 30mls daily, but this is a bonus. Today a litre of the muscle builder has been drunk, with a reallygood luncheon, light breakfast and tonight for the first time in months we both enjoyed Morroccan chicken and vegetables. kent is sleeping at the moment and I have to wake him for his Tarceva. Oh the other added bonus, he has discovered Volvic flavoured water and is enjoyng that.
The calogen was purchased through Westons internet and a 500ml bottle plus postage cost £20.00 odd. You can get it on prescription but it has to be prescribed by a Consultant. it;s one of those supplements NICE have put on the red list, but if it helps to get weight back on, I don;t care how much it costs. I have ordered a further two 500mls bottles of the stuff, banana and strawberry flavours. you can get Butterscotch and neutral also. It is three business days for delivery.
Fortisip was introduced when kent was so sick with jaundice and as he vomited everytime he had it, this has caused him to resist it now.
I made some chocolate fairy cakes today and he has enjoyed some of those. Looks like I am back to making cakes now. Idon't mind in the least, this way I can eggs and the rest into him.
Dr Boukersi is a miriacle worker and no you can't have him for your GP.
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Post by phillipa on Oct 15, 2008 0:47:37 GMT 1
It is with a heavy heart tonight that I write this. My darling Kent passed over to the Summerland at 5.00pm. We were laying on the bed watching British Greatest Meal when he passed.
On the 7th October Kent came down with gastro-enteritis. He system was too compromised to fight this.
His funeral will be on Friday afternoon.
Blessed Be
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duane
New Member
Posts: 44
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Post by duane on Oct 15, 2008 8:28:08 GMT 1
Hi Phillipa, I don't know what to say other than my thoughts are with you. Take Care Duane xx
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Post by thistle on Oct 15, 2008 9:15:50 GMT 1
Hello Phillipa,
I just spotted your post about Kent this morning and wanted to know that I can feel some of your pain. I am aware that Kent was in a similar situation to Paul and I just want to say how sorry I am that he has lost the battle he was fighting so strongly in. I will be thinking about you on Friday at the funeral and hoping that the sun shines down on you. I have never met you, only sent a few messages but feel I know you so well. Sincerely, Kimxx
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Post by jljenkyns on Oct 15, 2008 12:19:33 GMT 1
Phillip
My condolences i am so sorry to hear kent has lost his fight he was such a trooper he did defy the odds ,Our thoughts are with you all in this sad time
jim xx
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Post by phillipa on Oct 15, 2008 21:37:25 GMT 1
We really have to get the Tarceva protocols looked at. tarceva should be one of the first line treatments not one of the last resort treatments. Sad thing in all of this, it was working and started to shrink back the tumour in the pancreas and clearly was mopping up what remained of the lung cancer.
Thank you all so much for your kind thoughts at this time. I now have to get on live my life to help others in this fight.
Kindest thoughts.
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Post by jljenkyns on Oct 16, 2008 9:35:32 GMT 1
Phillipa
I totally agree it should be available as 1st line treatment but do you think they will give it?? Look at the fight we have all had to get it as 2nd line treatment all we can do is continue the fight
jim
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Post by Deanne Jenkyns on Oct 16, 2008 22:00:42 GMT 1
Dear Phillipa, I am so very sorry about Kent, even though we have never met I feel as though I know you so well through your postings and the support you have given. I feel devastated for you. Kent is a trouper and I know will be an ispiration to many following the postings about Kent on this site. My thoughts will be with you tomorrow sending you ((((hugs))))
Love Deanne xxx
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Post by norfolkbirdie on Oct 20, 2008 21:29:03 GMT 1
Phillipa
So sorry to read about Kent, he fought a great battle with what always sounded like a fantastic spirit.
Take care of yourself
Ros
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randyw
Junior Member
Just chillin with my friends
Posts: 80
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Post by randyw on Oct 22, 2008 3:20:19 GMT 1
I do know a little about a couragaeous fight and My heartfelt condolences to you and the family.. Have not been around much and popped in and saw this news tonite!
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Post by phillipa on Oct 22, 2008 13:32:31 GMT 1
Kent certainly wanted to change the way Lung Cancer is treated in this country and I hope his death will help take this treatment forward. One thing we learnt early, do not accept what they tell you as the be all to end all.
I have found that kent's story has touched so many people and the emails I have been getting since his passing have all said that they now question everything they are told, as they now know you don't have accept what is on offer locally.
I have two weeks supply of 150mgs Tarceva and I am wondering what to do with it. I certainly don't want it destroyed and would love to see it go towards giving someone who needs it. Any suggestions?
Once again thank you all so much for caring. it means so much to me.
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Post by jljenkyns on Oct 22, 2008 20:10:21 GMT 1
Hi phillipa
i quite agree hopefully things will change for the better and yours and kents story was one of courage and determination by you both, You certainly did touch a lot of heart strings . The one thing we do all share is that we do care about each other so much as we are all going through so much similarity.
take care
jimxx
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Post by daisey on Oct 23, 2008 13:30:34 GMT 1
Hi Phillipa, I haven't logged in for ages as Bob has been so ill and life has changed yet again so much. So sorry to read that Kent has passed away, especially after such a brave fight, on both your parts. Sending my thoughts and deepest sympathy. Love Daisey x
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Post by thistle on Oct 23, 2008 21:00:23 GMT 1
Hi Phillipa,
Thanks for your post about mouth ulcers. I managed to get paul difflan oral mouth wash but last week he was rushed into hospital as his lips, throat, tongue and cheeks all became so ulcerated that he could no longer talk or eat. They put him on saline and glycerine drips and then started him on fortisips and ensure drinks but he is struggling with anything more solid as yet. They gave him steroid cream for his rash on the face, neck, chest and legs and a barrier oral gel for healing the mouth sores together with nystatin for the thrush on his tongue. He came out of hospital on the 21st and is much happier to be at home. He only took 8 tablets but the oncologist feels he is in the unlucky 1 per cent of people who have a bad reaction to tarceva. Will ask next week what to do with the unused tablets as paul does not want to go in again at a lower dose, nor does he want any further treatment. He has had enough now and just wants to be left in peace. He is still very positive spiritually but extremely weak physically with a bad cough and feelings of nausea and exhaustion. The cold weather is not helping his circulation or enabling him to get out. This is his own decision however and I like the doctors and nurses respect it. Hope everyone else is doing the best they can each day to carry on going and living in the day. Much love, Kimxx
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Post by phillipa on Oct 23, 2008 22:20:03 GMT 1
Kim,
Kent had an Advance Directive and in it he clearly instructed what he wanted should he not be able to communicate himself. it was so handy to have this when he collapsed on the Sunday evening. When the paramedics and doctor arrived he was still out for the count and I waved the advanced directive under their noses and told them if they acted against it, it would be at their peril. the District Nurses knew about the the Advance Directive and had seen it. When Kent came around, the doctor asked him if he wanted to go to hospital and Kent said NO, you listen to my wife and do as she instructs now get me upstairs to my bed.
Maybe if Paul writes down what he wants and gets it witnessed, it will help you if it is needed. It is so hard to see the person you love so much in such distress.
I am so glad Kent and I discussed what he wanted me to do and he left that instruction in writing.
Draw on Paul's strength and this will help you cope.
Soft hugs
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Post by phillipa on Oct 23, 2008 22:24:30 GMT 1
Daisey,
Thank you for your kind words. Life certainly throws some curved balls. it is so lonely without Kent, but knowing that I did all I could to support him helps.
Soft hugs
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Post by dtay on Nov 20, 2008 20:16:45 GMT 1
Hi Philippa Just read this sad post - you both certainly fought a very courageous battle. God bless Dawn x
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