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Post by dtay on Aug 22, 2007 20:10:29 GMT 1
Great news Philippa - I am delighted that things are going so well for Kent. Hope things get better and better for you both. Dawn x
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Post by phillipa on Aug 23, 2007 11:27:22 GMT 1
Ros, My heart goes with you. It is the first of everything that seems to be the hardest, as each year passes, the memory is there and the hurt is softer. Look on your birthday as the beginning of a new year and how much stronger you are. Dave fought so hard and like us you tried everything. |thee is no right or wrong, but by golly as Deanne says we have to fight for ourselves with this disease, because if we don't it is sure the doctors wont, They take the path of least resistance and in their books one size fits all, when we know differently.
Looks like I become the purchaser of shitake mushrooms and kent will just have eat them, like them or not. I am going to drag Kent through the chemo. if he turns up his toes, it wont be for the lack of trying on my part. kent was horrified at the cost of free range organic eggs. he is finally seeing where the money goes. LOL..I am sure he thought I spent it at the hairdressers and on perfume. I used to have regular botox injections, not any more, decisions, botox or organic food? Money isn''t really that tight, but I have to make him feel guilty about my wrinkles. never mind the cellulite. I have offered him three stones of fat to help fill him out and tide him over. Offer of fat donation to anyone who wants it.
Where would I be without the support of everyone on this site? Oh yes, a quivering wreck.
Soft hugs to all
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Post by dtay on Aug 25, 2007 20:05:24 GMT 1
Happy to give some of my fat away !! Dawn x
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Post by phillipa on Aug 29, 2007 12:03:26 GMT 1
Yesterday was interesting. Addenbrookes not, what mess. one size fits all but as they found out Obi was not the one size. There must be a set script for new patients, who aren't new patients at all. kent stood his ground and told them in his best parade ground voice, check the records because he is not going to shoved around from pillar to post. his appointment is is with Hugo Ford for a consultation regarding chemo and if they had other plans he was going. With that things changed. He did not have to follow the other patients being treated on a conveyer belt, weight check, blood tests, xrays and then see the next oncologist when it was his turn. Within five minutes, we were taken through to see Dr Ford.
The figures and dosages worked out in front of us and then the consent form. he ticked curative, not palliative which we immediately questioned. Things have changed. The CT scan shows no further development with the tumour and they are considering the guidelines set out by David Bottomley if Kent decides to go this way. he asked did we have anything else we want to discuss, so of course I pipe up regarding Avastin. It is not suitable for squamous cell carcinomas, but he has a supply of it for suitable patients. the he floors us with, kent can have TARCEVA. I burst out laughing and asked was he going to fight the PCT for funding and he reply intimated that, this would not be necessary. What has changed? TARCEVA was refused at the very beginning, there was no way would it be prescribed by Dr Gilligan or any of the others practised at papwroth and Addenbrookes.
the other thing Curative. have they listened to David Bottomley and decided that perhaps there bog standard treatment is not the best treatment for some people and has Kent proved them wrong? Not bad for a man who should be dead or on his death bed by now according to Dr Gilligan. it was he who pronounced only a couple of months to live. if kent had followed what they told him, he would be dead by now.
He starts chemo on Friday for four cycles. I have stocked up on practically everything and for a house which never had a thermometer, I went out and bought one. Kent re-iterated if he feels this is not right for him, he is going to pull the plug on it, because he is not prepared to comromise his quality of life. So another step into unchartered waters begins for us this week.
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Post by Deanne Jenkyns on Aug 29, 2007 12:09:44 GMT 1
Amazing Phillipa, Shame you have had to fight your arse off to get where you are now so glad you did! The news just gets better and better for you and Kent rally pleased for you both! As for the Tarceva, blew me away too when I read that? Maybe they know something we dont??
Deanne x
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Post by phillipa on Aug 29, 2007 13:39:39 GMT 1
Deanne, I am not the only fighter for what we want. You whistle and I will point. LOL.. I am still wondering why the change of tune regarding Tarceva. Every visit I mention your Forum and Jimmy and the latest. perhaps if all of do this , more specialists might just start to question a few decisions. Surely there are others out there, who are in the same boat as us, but haven't realised there is a forum for them. I depair at the Roy Castle site and also Macmillan, people are not forthcoming or is it that are reticent to voice their fears, their successes or even offer comments. These sites really did not offer me any encouragement to be a regular vistor to them. I have them bookmarked, but that is all.
We have had one visit from the Macmillan nurse and one phone call. I am so glad I am resourceful enough to suss things out. I know of others who are not as resourceful and accept what they think is what is on offer. it's just not good enough
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Post by phillipa on Aug 31, 2007 9:11:51 GMT 1
The day has dawned, first dose of chemo this afternoon. I know I have the wobbles about this, I don't know how One Bung Lung feels, He plays his cards close to his chest. Have made sure he's had a substantial breakfast, scrambled eggs with a side of shitake mushrooms. Appointment at 2.30pm. I must get a copy of the dosage sheet to place in the file for reference. Both of us slept well last night.
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Post by Deanne Jenkyns on Aug 31, 2007 10:13:41 GMT 1
Hiya Ros, Hope that Kent copes well with the chemo. What cocktial are they giving him? Hope he ate all his mushrooms! Keep us well posted as to how things are going through his chemo. Thinking of you both ((((hugs))))
Deanne xxx
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Post by Deanne Jenkyns on Aug 31, 2007 19:33:53 GMT 1
Hiya Phillipa, Been thinking about you and Kent, how did it go today? Hope you wern't there too long and you are both feeling OK. I know I used to come from there feeling so down and depressed. The unit we were at was a room full of patients having their treatment. I remember sitting there thinking, I cannot believe we are here, You would get a side room if you were lucky. The nursing staff were like angels though. Any way sorry for babbling on, was just really to say been thinking about you.
Deanne xxx
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Post by jennieross on Sept 1, 2007 18:59:46 GMT 1
I have had some problems logging in hence my absence. Barry would not have surivived had we listened to the death sentence handed out 3 and a half years ago. We are now unfortunatley paying for everything, yes it's a strain and we are lucky to have the resources but the difference in care cannot even be quantified. Barry is now back on alimta and avastin. Has had hard week last week but is now feeling better. He is eating well, walking well etc. I posted on the Roy Castle site re alimta and nice refusal but noone seems to really care, what is happeningl ? People must know what is happening so why does hardly anyone reply etc etc. A demo of cancer patients outside no 10 against nhs drug rationing would embarrass government. We should get all cancer patients involved. Jennie
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Post by Deanne Jenkyns on Sept 1, 2007 19:08:59 GMT 1
Hiya Jennie, It is bloody frustrating that Lung Cancer issues seem to fall on deaf ears! It feels as if we are fighting a war on our own. I feel as if I am banging my head against a brick wall at times. I am trying my d**nedest to raise issues and awareness the only reward I want is for people to listen and take notice! It think the problem is when people are told NO YOU CANNOT HAVE THAT they do not have it in them to fight and are often too afraid to challenge or ask questions. A lot of the time fear of what they might hear. I think you are right we need to shame the government.
Deanne x
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Post by phillipa on Sept 2, 2007 12:00:41 GMT 1
Hey hom my sentiments. Apparently the EU Commission is challenging the government on the the PCT's post code regarding drugs. Apparantly what the PCT's and NICE are doing is flouts the anti-discriminatory laws..ta da. Are we on to something here?
Blow thinking the doctors are a God, they are NOT. the more peoeple challenge the better the results. I am going to make sure Kent gets the treatment he needs and the PCT is going to foot the bill all the way. I will use the EU Commission if necessary. let's who buckles first, regarding discrimination of treatment and drug availablity. They are questioning why some PCT's pay for certain drugs and others dont.
Kent is doing fine after Friday. he has had no sickness, he is eating and is just a bit more tired. i don't think he is game enough to be otherwise in case I come up with another cunning plan. He is even chomping at the bit to go shopping...the man has to be ill...
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Post by Deanne Jenkyns on Sept 2, 2007 12:06:49 GMT 1
Hi Phillipa, I was excited when I heard about the EU Challenge! About bloody time! So glad Kent is feeling ok ;D
Deanne x
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Post by phillipa on Sept 3, 2007 11:08:50 GMT 1
Update,
Friday fine, Saturday fine, but yesterday afternoon it hit. last night 11 times to the toilet, whether it was the fluid I am pushing through or if his kidneys are working over time, excreting the poison I am not sure. he is complaining of feeling so sore all over his body and his hands and joints are driving him crazy. No sickness just feeling really blerky and horrible.
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Post by Deanne Jenkyns on Sept 3, 2007 11:23:00 GMT 1
Hi Phillipa, Sorry the nasty chemo is making Kent feel ill. Hope it passes quickly and he is soon over the worst ((((hugs))))
Deanne xxx
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Vicky
Full Member
Here to support Deanne & Jimmy!!
Posts: 127
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Post by Vicky on Sept 3, 2007 11:39:43 GMT 1
Hi Phillipa,
I'm sorry the chemo is making Kent poorly.. just wanted to let you know i am thinking about you both.
Sending you both lots of Love and ((((hugs))))
Vicky xxxxxxxxx
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Post by norfolkbirdie on Sept 3, 2007 17:07:07 GMT 1
Hi Phillipa Hope he is soon feeling better, wrotten stuff chemo or maybe it was the shopping!!! Ros X
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Post by phillipa on Sept 4, 2007 10:34:03 GMT 1
Today the sun shines. kent's colour is awful, but he has eaten breakfast and says he feels better today. he's even heading off to pay the paper bill. I am planning to take him scrumping this afternoon, so many apples going for free at the moment. they are falling off the trees around here. Might also be lucky enough to get some blackberries. I am laughiung at him, I asked how the pain in the ankle was, he laughed and said his knees hurt more. I asked because he wasn't complaining about his gouty ankle. Just like the kids, give them something else to distract them. it isn't real gout, it is psuedo gout. Another tooth has broken off, so off to the dentist for him. he's literally falling to pieces. Just another day.
kent has asked me to say thank you all for your kind thoughts. He has finally realised what a fantastic support group we all have.
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Post by Deanne Jenkyns on Sept 4, 2007 15:17:05 GMT 1
Hiya Phillipa, Kent going off to pay the paper bill made me chuckle! Something like Jimmy would do! It amazes me how small things like that seem to matter to them lol! I am glad he is eating though thats good! Jimmy always managed to keep his appetite I hope Kent does too! Apply and blackberry pie! yummy! Can I come to yours for tea then Deanne xxx
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Post by phillipa on Sept 5, 2007 9:13:24 GMT 1
You are welcome anytime Deanne. We worked out why the teeth are breaking, it is the mouthguard they use to get the instruments down into the lungs. He is seeing the dentist tomorrow morning. Mrs Hyde has warned that there might not be much she can do and to make sure that if he needs antibiotic cover to make them aware of it and they want to see the blood test result takene today. if kent is not neutropenic he will have the last bit of laser surgery to punch through and open the other airway. they are actuallyy removing the inside of the tumour and the chemo should be mopping up the outside bits. Bit like the hollow tube or a straw. I didn't realise this until the other day.
I have it with the whinging of the aches, what the heck diod he expect, a walk in the park? I bet he did. Mr Invincible, he is not ready yet to wear his boxers on the outside of his trousers..oh I do laugh, he puts food into his mouth and says it is like sucking a lemon. Oh well we are leaving in two hours. I need some sleep, it like being in bed with a groaning machine. Anyone got a good cure for xonstipation? Don't suggest the method used by the constipted mathematician
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Post by phillipa on Sept 6, 2007 19:13:50 GMT 1
Constipation fixed, so less to complain about, surgery went well and another go in two weeks, top up of vinorelbine tomorrow and other blood test. yesterday's blood test for the dental treatment higher end of nromal scale. No antibiotic cover needed. Oh we are not going with the course of antibiotics to be started tomorrow or starting the anti-fungal treatment tomorrow either. Why take something which going to kill all the good bacteria and then take somethng to counteract the yest growth, that thrives with no good bacteria? We have done it naturally so far so, why break a habit? Have a talk with the quack tomorrow about this.
Oh kent is on carboplatin 550mg and Vinorelbine 40mg which is 80% dose instead of the full whack.
Found ourselves a lovely dentist, she is in private practice, very efficiant and very interested. Spoke to a colleague about the antibiotics and ant fungals and they are of the opinion leave well enough alone and while Kent is in such good nick, why kill off the good stuff if it is not necessary. The only problemKent has had is with the taste sensation but once he has a mouthful and settles everything is ok.
Oh sold out of Shitake's in town. Too bad, kent thought he wasn't going to have any more for a couple of days. Went into Julian Graves and got some dried ones.
Life is so much fun if you don't weaken.
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Post by Deanne Jenkyns on Sept 7, 2007 14:21:38 GMT 1
Hiya Phillipa, great news that all went well with Kent. I used to get Mushrooms here www.smithymushrooms.co.uk/ they were very good! Don't tell Kent I told you that he may fall out with me Deanne xxx
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Post by dtay on Sept 10, 2007 17:24:17 GMT 1
Philippa - love your updates, look forward to reading them everyday !! x
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Post by phillipa on Sept 10, 2007 19:35:34 GMT 1
We got the top of chemo on Friday. For some reason I was scratching for a fight, I think it was another blood test, hell how many in a week and they couldn't or wouldn't pick up the phone and ring Papworth. So more bloo drawn, then we had to kill an hour..how the bloody hell to do kill an hour when you have paid for parking and no where to go. We managed it, wnent back to the day unit, oh bloods back they are the same as you guessed it...spitting by this time and then told, oh come back in half an hour and they will have the chemo made up..the original appointment was for 2.30pm it had now gone 3pm. So we wait and wait and wait, 4.15pm we are called in for the push and the dextrose. We left home at 11.45 am for this exciting half hour. Now as an aside one bung lung was one bung bum for a couple of weeks, he aint no longer, he is having some very moving moments, between the aching ankle and knee, so I reminded him, while he has his eyes open and feels the pain and can see me, he's ok.
The great shitake hunt. Found three punnets today at Sainsburys, so I bought the lot and ease the pain the Duchy Original organic bacon was reduced from £2.99 to £1.20, so I snaffled up half a dozen packs. I didn't realise the shitakes came in from china (no don't worry I know they are an oriental mushroom, but I thought they would be growing them over here), so looks like I am going to use Deanne's source.
Kent still hasn't had any mouth problems with thrush, so he is not taking the anti fungals prescribed, but I am having problems pushing extra fluids through. It is like a small child. he knows he has to, but he wont. he loves his coffee, but I can't stand by and watch this...I mix up juice of a morning, and make up Robinson fruit and barley, two litres a day. Moan over, dinner to prepare and more moans to listen too..arrgghhhh.....
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Post by Deanne Jenkyns on Sept 17, 2007 11:37:51 GMT 1
Hiya Phillipa, Hows things going with Kent? Hope he is doing ok Deanne xxx
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