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Post by Deanne Jenkyns on Oct 15, 2007 16:29:55 GMT 1
LOL Phillipa! If Kent runs out of stuff to do for you you could always send him here...I could keep him busy for a while ;D Glad to see after the set back he is doing better Deanne xxx
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Post by phillipa on Oct 16, 2007 10:16:14 GMT 1
I have to motivate him first Deanne. everything is here waiting to be fixed, appended, installed. Two thing did get done this week, the new reclining chairs. They came in flat packs. Now we both recline in luxury
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Post by Deanne Jenkyns on Oct 29, 2007 22:35:37 GMT 1
Hiya Phillipa, How is Kent doing? Hope all is well with his treatment.
Deanne x
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Post by dtay on Oct 31, 2007 23:01:18 GMT 1
Hi Phillipa, Hope you and Kent are ok. Dawn x
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Post by phillipa on Nov 29, 2007 13:00:26 GMT 1
Update..
Obi One Bung Lung has finished his chemo treatment. Yea sick of travelling up and down the A14, M11, funny to have Fridays and Mondays free at the moment.
He had another bronchoscopy done last Thursday and the tumour has not grown and they managed to remove some more of it, nearly through to the lower airaways, next bronchoscopy being done on 27 December. Obi has returned to work full time and has managed to gain two kilos, he has slimmed down to a 34 inch weight and would box in the featherweight class, the cough has lessend.
He has another CT scan done next Wednesday and then to see his favourite oncologist the following week.
A scary development though, a lump has developed in the back of his neck. it might not be anything, but you never know. We have come so far and are planning a party for his 60th in February and it will 10 years on 20th Feb since he retired from the Navy, what a roller coaster those ten years have been.
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Post by Deanne Jenkyns on Nov 29, 2007 13:53:54 GMT 1
Hi Phillipa! great to see you online again and so happy to see that KEnt has now finished his chemo. Even better that they managed to get more of the tumour ;D Hope the lump turns out to be nothing, everything is such a bloody worry isn't it! How are you feeling now Phillipa? The last time we spoke you were poorly youself, hope you are ok. Party sounds just what you both need!
Take care Deanne xxx
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Post by phillipa on Nov 30, 2007 10:57:43 GMT 1
Hi Deanne,
I am waiting for my appointment for the endoscopy. Having it done privately, sick of being stuffed around by the GP and the NHS. Strangely, the last two days everything has been quiet for me, then again I am being careful how I move...
Thank you for being so caring.
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Post by phillipa on Dec 10, 2007 11:37:37 GMT 1
Just an update on how Obi is doing. This is week three back at work full time. night time coughing is lessening, so cut back on ora-morph and cabosisteine. We have had four nights of uninterrupted sleep. Cough still around during day but not to the extent it was. See the oncologist next Thursday, should have been this week, but he wont be ther, they did offer for One Bung Lung to see another oncologist, but why? so opted for next Thursday the results of the CT scan will be in then also. Fingers crossed. Been busy with court appearance for members regarding bank charges and we are leading up to High ruling and uneforceable agreements, the Judge ruled last week that the print on the agreement was far to small to read, so no-one would know what they were signing, ne then allows it to become enforceable because we could not show it prejudiced the claimant, but it would prejudice the credit card company and debt collecting agency trying to collect on it. So off to the Court of Appeal we go and we will show prejudice and a bit more case law which was ruled on in the House of Lords, which the District Judge ignored completely. By golly it's hard work being a consumer advocate. No, this is not to get people out of paying their just debts, this about unlawful penalty charges and added interest and the banks making a fortune out of other peoples misfortune. I hope that has answered the cynics. Back to One Bung Lung. He is putting weight back on, so hopefully this dreadful disease might be on the run. This month three past his use by date and back at work full time.
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Post by Deanne Jenkyns on Dec 10, 2007 17:15:43 GMT 1
Hiya Phillipa, So nice to know that Kent is doing so well ;D ;D ;D Fantastic that he is back at work full time! sorry you are having to go through a whole load of bother re your charges hope it gets sorted soon Take care Deanne xxx
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Post by phillipa on Dec 21, 2007 12:49:06 GMT 1
Now where do I start???
Saw the oncologist today and the news is sooooo good, far better than anyone hoped for and even better than he thought it would be. The tumour has shrunk away from the oesophageal mucosa and it is now 50% less than what it was back in August. This has opened several further treatment options for us. So a cuppa and then a chat with the surgeon, Lung to be removed, with part of the oesophagus and part of the heart to make sure all the cells are cleaned out. Ummm no this is not an option with the mortality rate and complications and remembering Kent has Marfans, so the other options are further chemo or radiotherapy, now this can be done in two strengths, so a talk with a lovely lady radiologist who sadly is off to Melbourne in January to the Peter Mac, oh bugger..but we have the option of another Radiologist from Peterborough, but the treatment has to be Addenbrookes in either case. So all treatment and side effects discussed and once they see exactly what the remaining tumour is like it can either be short intensive course or the 28 day course, which will be discussed at the planning meeting and they game to talk CURATIVE. Kent will be left with some residual scarring and maybe some other problems, but these are far better than what we were facing back in March this year. She said this is uncharted territory because of the cryotherapy and diathermy treatments to debulk the tumour, but as far as she can see it full steam ahead. Kent re-iterated that under no circumstances is Dr Gilligan to be part of his radiotherapy treatment and this has been recorded on his notes. Dr Ford said that there most probably would be a residual cough and we both laughed that it can't be any worse than what he has now and if the oesophagus narrowed they can do surgical intervention to open it. So all systems go for the New Year. Guess I write off January and February. Kent has his next lot of surgery next Thursday and they are hoping to get rid of the residual bulk of the tumour then, all his airways will be open. What a day, far better than we both even hoped for, so in nine weeks time we will be coming up to the first year since diagnosis and what a different outcome from the original prognosis. Guess this is a lesson to follow what your gut instinct tells you, and fight for what you believe is right.
We discussed Tarceva if this doesn't proposed next step of treatment doesn't work, and the funding issues surrounding it. Dr Ford says is if this ends up being the case, he will fight for us all the way.
Blessed Be
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Post by Deanne Jenkyns on Dec 22, 2007 11:29:11 GMT 1
Phillipa, It really is refreshing reading such a positive post! Lovely news anytime but just before christmas even better! Hope you and Kent have a magical Christmas and in the new year the good news continues. ((((hugs))))
Deanne xxx
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Post by jljenkyns on Dec 22, 2007 11:56:38 GMT 1
Hi phillipa
what a xmas present for both of you , i could not be happier with this news. I hope you both have the best xmas ever and all the best of luck for 2008
love jim xx
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Vicky
Full Member
Here to support Deanne & Jimmy!!
Posts: 127
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Post by Vicky on Dec 22, 2007 19:09:13 GMT 1
Phillipa,
This is such wonderful news!! I hope you and Kent have a wonderful christmas and 2008 continues to bring you both good news.
Love Vicky xxx
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Post by dtay on Dec 22, 2007 21:23:08 GMT 1
Great news Phillipa love to you both Dawn x
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Post by phillipa on Jan 1, 2008 14:08:55 GMT 1
Hello Everyone,
Happy New Year to evryone wonderful person on this site. Have been absent for a few days, got a dreaded head cold and really felt under par, but as they say onwards and upwards. Obi One Bung Lung is full of the cold now and boy, like a man, he is letting me know all about it.
Thursday 27th saw us back at Papworth and our favourite bronchoscopist doing his thing. We have nicknamed him the 'Tunneller'. They have manged to evacuate the tumour nearly down to where they want it. Dr S says this is amazing and commented it has a lot to say about Kent's psychological state and his body. He never thought that they would have this success and he wants to continue with this treatment. Kent starts the workup for radiotherapy on Thursday 3rd January and maybe with the success of the brochoscopies this may not be as rugged as they planned originally.
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Post by Deanne Jenkyns on Feb 1, 2008 22:08:07 GMT 1
Hi Phillipa, how are things going with Kent? Well I hope. Hope you are doing ok too!
love n (((hugs)))) Deanne xxxx
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Post by dtay on Feb 4, 2008 18:03:15 GMT 1
Hi Phillipa - just echoing Deanne's post, I was just wondering how you and Kent are doing. Love Dawn x
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Post by phillipa on Sept 1, 2008 17:17:05 GMT 1
Time for an update. One Bung Lung still has one bung lung, but it is the other lobe now. The original tumour has gone caput. We beat it, but insidiously the cancr was doing it own thing elsewhere. he had two spots on the other lobe, which were classified as of no clinical significance when when we astart this wak on the wild side. Today one of the spots is now a cancerous nodule of 2.5cm, he has a 5cm tumour on the pancreas, a stent to drain the blocked bile duct and now spot on the liver, as well as a secondary in the left leg calf muscle, whch today was irradiated in one session.
There is a silver lining to every dark cloud. Tarceva has been prescribed for the secondaries and as it is also used for pancreatic cancer, the silver bulet might do the trick. Hugo Ford explained it is palliative and not curative so with luck the cancer will held, even stopped.
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Post by phillipa on Sept 2, 2008 18:24:32 GMT 1
Day One of Tarceva. Kent says he is feeling a bit better. I have noticed he hasn't been as breathless today and he has eaten more than normal. He is looking brighter also. Kent says he s feeling more tired than normal. I have everything crossed that it is starting to work.
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Post by daisey on Sept 3, 2008 18:48:59 GMT 1
Do so hope Tarceva works for Kent but very sad for you both that other areas are now affected. I think Tarceva was very good in that it "held" back the cancer that Bob has but not completely and he now has problems in his liver too. We have asked for a referral for a second opinion at Addenbrooks. Best of luck with all this. Daisey x
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Post by daisey on Sept 3, 2008 18:56:32 GMT 1
Oh God, I've just gone "back" and you seem sigularly unimpressed with Addenbrooks! Have we done the right thing! I thought it was the top Cancer Center outside London? ?
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Post by phillipa on Sept 4, 2008 9:02:13 GMT 1
Daisey,
You might be find what you are looking for at Addenbrookes. If I had my choice for a second opinion it is Cookridge up in Leeds, it has now moved to St. James hospital and David Bottomley the best man. We used David for the second opinion with kent. Addenbrookes do things on our terms not theirs, it took some time to get this concept through to them. Wwe go there under sufference as it is the closest centre to us. Let me know who is giving the second opinion at Addenbrookes. Push for Professor Tim Eisen or Hugo Ford if you can. I wont say too much on an open board.
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Post by phillipa on Sept 4, 2008 23:03:17 GMT 1
Today has been a rough day for Obi. He had breakfast, said he felt rotten and went back to bed. Stayed there all day, nothng to eat or drink. Has spent this evening shivering and is now in the bathroom, throne sitting. I know diahorrea is one of the side effects and I hoping this is just a glitch, as he is also recuperating from the radiotherapy on Monday. I am worried if he doesn't get some fluids into himself, he's going toend up back in hospital on a drip to rehydrate. Any hints?
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Post by jljenkyns on Sept 5, 2008 9:04:41 GMT 1
Hi phillipa
The diarhorrea normally levels out fairly quickly. hope kent feels better soon
jim
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Post by phillipa on Sept 5, 2008 9:34:03 GMT 1
Thank you for the Jimmy. This morning from the shivering, incoherent wreck of last night, this morning he is like a box of fluffy ducklings. I get up to get the Tarceva and a large glass of water, creep back upstairs to the bedroom, dreading waking Obi. he sits up and says, I am so thirsty. I look at him and he is looking so much better. Up, showered, shaved and dressed, looking for breakfast and more fluids. Kent says he has an itch, so moisteriser liberally applied. Says his pain is reduced and his leg is feeling a whole lot less painful. Now I want to hurt him, the worry he put me through yesterday. This is certainy a roller coaster ride.
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