|
Post by phillipa on Jul 27, 2007 9:50:49 GMT 1
I am sure it is the positive vibes we keep getting from everyone, helps with this fight. it might just give some other docs the courage to try the more unconvential route to help with palliation. We might make it to our wedding anniversary.
Thank you all for being so caring.
|
|
Vicky
Full Member
Here to support Deanne & Jimmy!!
Posts: 127
|
Post by Vicky on Jul 27, 2007 22:38:42 GMT 1
Hi phillipa,
I just want to send you lots of positive vibes!!!
Thinking of you (((hugs))))
Lotsa love,
Vicky xxxxxx
|
|
|
Post by dtay on Jul 27, 2007 22:57:06 GMT 1
Positive vibes from me too Phillipa - thinking of you both x
|
|
|
Post by phillipa on Jul 29, 2007 9:25:34 GMT 1
I have to share a bit of good news. last night was the very first night of not coughing. I know it is not earthshaking the greater scheme of things, BUT for us it is. I got woken at 4am by the old cat coughing up a hairball instead. There has to be some irony in that happening. I wasn't sure if I should give her the Carbosisteine or the oramorph.
Kent's colour is so good, he has lost that grey around the gills AND he managed to mow the grass at the side of the house, without getting breathless. I wouldn't let him pull start the mower, just in case, but hedid continually empty the grass catcher without a cough. He was tired after that effort, but he said he felt fine.
The postive vibes from everyone are helping and thank you for being so caring.
|
|
Vicky
Full Member
Here to support Deanne & Jimmy!!
Posts: 127
|
Post by Vicky on Jul 29, 2007 15:15:56 GMT 1
Awww Phillipa,
I am so pleased to read your post... sounds like Kent is doing really good at the moment which must be such a relief for you (((hugs))).
Sending you both some more positive vibes ((((((((((((positive vibes))))))))))))))
Thinking about you.
Love Vicky xxxxxxxxx
|
|
|
Post by norfolkbirdie on Jul 29, 2007 22:22:05 GMT 1
Excellent news, you must be so pleased. Spooky cat coughing up the hairball though?? Hope he continues to have cough free nights. Ros X
|
|
randyw
Junior Member
Just chillin with my friends
Posts: 80
|
Post by randyw on Jul 30, 2007 0:06:18 GMT 1
Prayers go up and blessings come down!! glad to hear good news also!!!
|
|
|
Post by phillipa on Jul 30, 2007 8:47:06 GMT 1
The cats have been really sensitive since Kent has been ill. They try to comfort him and the old girl mimics him. Sparky the younger cat is his soul mate. Sparky come to me for the cuddles, but when Kent is not feeling well, he goes over and tries to comfort Kent.
We are so blessed to have such caring people surrounding us.
Thank you all
|
|
Vicky
Full Member
Here to support Deanne & Jimmy!!
Posts: 127
|
Post by Vicky on Jul 31, 2007 22:27:43 GMT 1
Hi Phillipa,
Its amazing how aware animals actually are isn't it!!!
How is Kent doing today? How are you?
Lotsa love Vicky xxxxxx
|
|
|
Post by phillipa on Aug 8, 2007 10:38:04 GMT 1
Kent had the eGFR study done yesterday in prep for the chemo. he see Hugo Ford next Tuesday 16th about the starting of chemo. I am only hoping they keep to their word about the lower dose chemo.
|
|
|
Post by jljenkyns on Aug 8, 2007 20:33:59 GMT 1
Hi Phillipa
We hope they do keep there word!! How is kent at the moment is he feeling any better
jimmy xxx
|
|
|
Post by phillipa on Aug 10, 2007 19:12:12 GMT 1
Sorry about the tardy reply Jimmy.
kent is feeling and looking fantastic. he has gained a kilo in weight, is sleeping through the night and is not vomiting.
I am making him eat a cooked breakfast every morning, he has reduced the ora morph to 5 mls twice a day only same with the carbosisteine. his colour is fantastic, he has lost the grey pallor and he managed to mow our quarter acre this week, he did it in one go and was not breathless. Now if we can get the achy joints and swollen ankle sorted. I am sure he has gout, also having Marfans, as you get older the joints do ache errribley as the tendons and ligaments are like and india rubber mans.
We have just got back from Cookridge and what a breath of fresh air. David Bottomley is fantastic. Kent's psa is down to 0.20 which in itself is remarkable and David admitted he didn't expect such a fantastic result.
We talked about the lung cancer and he remarked that the bronchoscopists are very brave men and the result they have acheived is fantastic. David is of the opinion that Kent's tumour is treatable and he says he would love to give it a go. We discussed our reservations about the being able to trust them at Addenbrookes. kent might consider radiotherapy at what David has suggested four weeks(20 exposures) not seven (35 exposures). he is going to write to Hugo Ford with his suggestion and we can decide from there. kent said he will see how he feels with the chemo and then review the situation and decide. I would want a written assurance from Addenbrookes that they will only treat as suggested by David . otherwise we just might be staying up in Leeds if kent decides to go ahead with the radiotherapy. We talked about Tarceva and David said it is a plaaitive option, I replied well this is what is happening - palliative treatment. David is questioning why they said palliative, as he is sure this can be beaten but of course no guarantees given. he says after kent's prostate prognosis initially and what the outcome is now, he reckons the lung cancer just might be controlled and not be palliative. he also remarked that kent looks really well, compared to when he saw him in March.
The appointment arrived for Kent's next date with the laser knife, 21st of this month. Busy time ahead for him.
|
|
|
Post by dtay on Aug 10, 2007 19:36:07 GMT 1
Hi Phillipa, Pleased that Kent is feeling so much better that is wonderful news. Dawn x
|
|
|
Post by phillipa on Aug 11, 2007 12:19:46 GMT 1
None of you are to laugh at this. let's just say we both BIG smiles on our faces this morning. Something clicked in to place and hey hey hey, it is very happy Saturday. No little blue tablet needed. This was discussed yesterday.
|
|
|
Post by dtay on Aug 11, 2007 16:08:12 GMT 1
Well done !!! Not laughing at all
|
|
randyw
Junior Member
Just chillin with my friends
Posts: 80
|
Post by randyw on Aug 15, 2007 13:19:48 GMT 1
|
|
|
Post by Deanne Jenkyns on Aug 15, 2007 14:11:19 GMT 1
Hiya Phillipa, It really is so refreshing to read posts like this, It brightens up my day!
Love n ((((hugs)))) your way Deanne xxx
|
|
|
Post by norfolkbirdie on Aug 16, 2007 10:57:55 GMT 1
;D What else is there to say!!!! I want so much for good news for all. Ros
|
|
|
Post by phillipa on Aug 18, 2007 11:12:29 GMT 1
This is the email sent to family on Thursday after seeing Hugo Ford Taken five minutes ago. Sparky heard the camera hum and raised his head. Back from the hospital and it is all systems go. No more weight loss, so that is holding, ora morph reduced, coughing lessened, so as Kent said not bad for a dead man . Dr Ford agreed and said this is so surprising; he thinks it is gout but is getting blood tests done and also a dopler scan on Kent's leg to rule out clots, but he is sure that clots are unlikely. He is surprised that Kent is doing so well and remarked that tumour is reduced. Kent is to have another CT scan next week to see just what is happening now regarding the oesophagus, but all in, really surprised at how well things are going, he even ventured that this might just be cured. He will be taking David Bottomley's suggestions on board regarding the radiotherapy and see if this can be included in the protocols if Kent is willing to go ahead. Kent re-iterated it has to be using David's protocols or he wont have it done down here, and will go to Cookridge, if it is going to be done at all. You can bet they wont want the money going up the A1. What a different story to those months ago. Just goes to show, hang out, research, ask questions and ask why not. You never know, what the broncho practitioners are doing, could be an a nother option in handling this type of tumour. Next Tuesday is the mopping up session with the laser knife and then the chemo starts the following week. Hugo Ford said he will give us copies of all the paperwork with the calculations to prove that he is keeping to his part of the bargain and he wont let anyone else do it, so we will be writing off September for a start and if this is successful, October and November will be booked up, so we will up to December by the end of this round of treatment. If Kent does decide to have radiotherapy, this will take us through to the end of January and then it will be his 60th birthday in February. After last week's consult with David regarding the prostate, we are feeling a bit happier, remaining realistic and just allowing a bit of relaxation
...............................................
Had a phone call from Clare on the Cancer specialist nurses and kent has the CT scan and the ultra sound done on Tuesday before his next bit of surgery.
He's has the blood test for gout done, so I guess we will have that result on Tuesday also.
I am stating to think CURE might just be an option, but I am not getting my hopes up at this stage. So much can go wrong.
Ros, it is so good to see you on line. I hope a bit of Sunshine is in your life. Hugs
|
|
|
Post by Deanne Jenkyns on Aug 18, 2007 12:08:18 GMT 1
Phillipa, I am so happy to read this I cannot tell you how much! What a trouper your Kent is! It is so rereshing reading this post! I hope things continue to do well, reading this their is no reason why not.
Take care Deanne xxx
|
|
|
Post by dtay on Aug 18, 2007 18:35:14 GMT 1
Yes absolutely - great news for you and Kent, I am so pleased for you both. x
|
|
|
Post by jljenkyns on Aug 18, 2007 20:43:15 GMT 1
Hi Philippa
what a turn around from a few months ago.! So good to see you are both so positive. As you say dont give up the fight ask the questions. A lot of credit to you both for your fighting spirit we both know what you hve had to endure. Give my best regards to kent.
jimmy x
|
|
|
Post by phillipa on Aug 22, 2007 9:12:34 GMT 1
Report on yesterday. Everything went well, they are really digging this tumour out of the remaining blocked airway. One more go and it should be cleared. This is to be done on the 6 September, if Kent is not neutropenic. He goes down to Addenbrookes on Tuesday for the consult before chemo commences, they think it will be next Friday. Dr S came around as they were settle Kent back on the ward. he showed me the diagram and the bits of tumour they got out. He says now is the time to get the chemo started to get the rest. His uric acid level is within the normal range so with the gout? we must be doing something right again. Sticking to the Ibuprofen and glucosomine The doctors keep asking what we are doing to keep Kent like he is and I just say we are using our commonsense all the way with this. He has had no further weight loss. His lung function has not deteriorated and his sats are still remain at 97%. The only visible sign is the weight loss , tiredness and the cough (which has lessened considerably). One big change has been consumption of bread. I am using more unleavened bread and have limited his consumption of cake and biscuits (cookies). Our diet is more vegetarian, yes we do have meat but in smaller quantities. I have also switched to practically everything being organic. So that's it, ora-morph considerably reduced, less carbositeine being taken and of course a good diet and exercise. I hope we have prepared ourselves for the onslaught of the chemo when it commences. We have now passed the five month mark since diagnosis and Kent says he feels no different now to when he did in the beginning. I know I am very tired, but that will pass. It has been such a long haul to get this far, keep the quality of life Kent wants.
|
|
|
Post by Deanne Jenkyns on Aug 22, 2007 10:31:18 GMT 1
Hiya Phillipa, What a result! Fantastic! Jumping up and down for you! Things are going really well....again like us where would you be had you not challenged and dug in your heals and fought all the way? That is something that sticks in me like a knife when I think about it, it really annoys me. We completely changed his diet when he went through chemo, no sugar, organic lots of fruit smoothies and he ate shittake mushrooms most days in omelets, soups etc. He sailed through it thank goodness!
Sending you much luck and lots of ((((hugs)))
Deanne xxxx
|
|
|
Post by norfolkbirdie on Aug 22, 2007 11:26:59 GMT 1
Phillipa
Still come on line to see how everyone else is doing and it's great to read when things are going well for people!! Sounds really good for Kent and I hope all the treatments will bring the best of results. It is hard not to feel jealous and wish that Dave was still here but it's also good to know we tried everything we possibly could but couldn't stop it. I am trying to keep busy with family and friends , finding it tough but hopefully each day will get easier, it's my birthday this weekend and I know that will be hard but it's just another one I have to get through. So I will continue to look for good news from all of you and be hoping that you get it. Take care Ros
|
|