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Post by phillipa on May 8, 2007 15:15:48 GMT 1
Dawn,
This are fine with us,, exscept for the pelican of an oncologist. The man signed the DS1500 as the diagnosis being made 1 May 2007. That was the day we saw him. I have been on to DWP and to Papworth to draw this to their attention, Have to see the GP this evening to get this amended or a new DS1500 filled out with the correctr date. I have been photocopying letters and appointments to prove that the date is wrong.
Kent has that old fire back in his belly. As he says we proved them wrong first time around and by golly, I am going to get what I want, not what they want to give me. He was whistling this morning as he got ready for work. Something he hasn't done for months. I think because he has taken back control. Whether it is right or wrong, is not for anyone to judge. It is his decision and we will see what happens when he sees Hugo Ford on the 17 May.
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Post by dtay on May 8, 2007 16:15:52 GMT 1
Pleased that he is whistling again, Phillipa, thats a good sign !! Dawn x
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Post by phillipa on May 9, 2007 9:29:48 GMT 1
Kent got up this morning, complaining about the old girl, our white persian, Hey, I think Kent is going back to normal, after our visit to see our GP. he altered the date on the DS1500 and signed it, I out a covering letter in and posted off the form. Misty, our GP remarked how much weight Kent has lost and wanted to know what he is going to do regarding the chemo or lack thereof. Kent got me to tell him and he said, good you are fighting back, he then advised us to tell Hugo Ford exactly how we feel and why. he also said, his role is to see that we make it through the next couple of months, how we want it to be. While Kent gets uo to go to work, I am going to act as normal as possible. Yesterday I stripped our kitchen floor and then reapplied the polish. What a job.
Off to court today with a friend. We are in the business of reclaiming back unlawful bank charges. Today she takes on Cabot and MBNA.....
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Post by norfolkbirdie on May 9, 2007 10:03:59 GMT 1
Hi Phillipa Great to hear Kent is back to his old fighting self and you are both feeling better!! Good luck with the court case. Ros
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Post by phillipa on May 17, 2007 22:22:38 GMT 1
Back from Papworth . As you all know when I get the bit between my teeth I don't let go until I get the answers I am seeking. The appointment with England's best was a fiasco, so having a few days to mull the whole episode over and then him using the nurses to try bullying and fear tactics to get Kent to agree to his version of chemo, set me off. I rang the Chief Executive of Papworth Hospital and said I was going to make a formal complaint regarding that appointment and the bullying. This in itself set off a certain chain of events which led to today and a complete review of Kent's diagnosis and treatment and the definition of palliation. The appointment was made for Kent and I to see Dr Hugo Ford and Gillian Stent the Cancer Nurse Practitioner. Dr Ford, a very nice man he asked Kent a lot of questions and then asked Kent what he wanted. He then listed the options available. One of these options is a for the tumour to be treated with cryotherapy. They had Dr Hunter an expert in this review Kent's file and he said he thinks he can do this, maybe over two sessions and they might be able to reinflate the lower lobe of the right lung. Dr Ford did re-iterate the chemo and radiotherapy options and then he surprises us with not six cycles of 18 weeks, but four cycles over 12 weeks. Both of us sat up and queried this. Gilligan thought he would try something more radical with Kent, without Kent's knowledge apparently. Gilligan put this to us as the only option if Kent refused radiotherapy. Dr Ford said he is agreeable to treat Kent, on Kent's terms and yes he would prescribe the chemo at 80% instead of 100% dose per cycle. he agreed quality of life is more important than perhaps extending life by two years of really ill health. he said the option offered by Gilligan only works in about 20% of cases and obtaining a cure. He said the rest can go down hill very quickly, with no relief of symptoms. So the plan is, Kent will have the bronchoscopy cryotherapy treatment and then after that he will consider the lower dose chemo treatment and Dr Ford didn't push him, he just said he will give Kent the treatment he wants. He listened to our arguments and what we want to do with the time we have. he also said, he sees no reason why Kent can't keep working while he can and to make plans to return home. Dr Ford stated Kent being fit is an advantage and he will try to relieve the coughing and inflate the lung if possible and try to keep the status quo for as long as possible. What a difference the threat of a complaint makes and standing your ground instead of accepting the bog standard treatment. Gilligan was going to use Kent as a guinea pig. I asked this question and both Dr Ford and Gill looked at each other, but didn't reply. Now that is not informed consent. he is not interested in quality of life. he is only interested in his statistics and funding for that bloody centre at Addenbrookes. it's the same as the Prostate option offered to us. Papworth does not want to see the funding go to Leeds, because we knew this option is done there and we would not hesitate to take the money and be treated up at Leeds. My question now is, why did I have to threaten a formal complaint to get this option? Oh I know, but it may not be political to voice it hear, but it has to do payment for certain procedures. Dr Ford knew he had a job to do today, and he knew if he did not tell us all options available and for us to make OUR choice, the formal complaint was ready to be submitted. Yes, you could say I bullied them into getting what Kent wants, but they have more to lose. This treatment option is going to cost more, but if they don't do it, Cookridge (Leeds) will and then they will have to explain to the Health Commission why they didn't give Kent ALL the options. There is a two tier system here, those who will accept whatever is dished out and those who know what is available and will not accept the cheapest option. I do not treat the doctors as gods, I will research and I expect all my questions to be answered. If my arguments are not feasible, please tell me why, but don't ever talk down to me and treat me like an idiot. This will be done at Papworth. I am sorry to say the best man over here, is not the best person. Dr Ford is not a radiotherapy oncologist. he is a thoracic oncologist and in my opinion a far nicer person. he even discussed Tarceva with us and gave us his reasons why he doesn't think Tarceva is the best option for Kent. Something Gilligan would not even discuss with us, he just dismissed it with, 'you are too fit'. Kent might be having the first lot of cryotherapy next Thursday, if they can get him in, otherwise it will be the week after. it's good to know that they are willing to attempt this. They also said Kent can have Methadone to control the cough if this doesn't work.
Both of us are feeling lot happier tonight. I still say it's a post code lottery regarding treatment options and the bias of whichever consultant you are seeing.
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Post by dtay on May 17, 2007 23:11:55 GMT 1
Well done guys, so pleased that you are eventually getting what you want ---makes me mad tho' that you have to go to the extremes to get it. Why dont they listen to the patient more !!! You are so right Phillipa it is all to do with statistics,targets and money. ((Hugs))
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Post by norfolkbirdie on May 19, 2007 12:45:53 GMT 1
Hi Phillipa Yes it is a postcode lottery!!! What a relief for you both to find someone who treats you as reasonable intelligent people and are able to make a considered decision, given all the options, on Kents' treatment. I don't understand why Docs feel they have the right to just offer what they want to do??? I have never heard of the cryotherapy option but again it sounds logical. Good luck for the next couple of weeks. On another point, you have had to battle to get the options spelled out to you, we have had to challange and question along the way, suggest treatments etc... and general keep at the Docs to ensure we were getting the best treatment, Dawn I think you have had to do the same for your Dad?? Deanne we know about your challenges and all the rest of the people who read these notices We are lucky in that we have the strength and ability not to be "afraid" of Docs positions and are able to clearly communicate etc... What about all the people who can't??? How do we help them and also educate/train Docs how to deal with us??? Maybe we should think about offering some of these hospitals "patient training" I am being serious about this as I know docs are trained in patient care/bedside mannner but in my experience very few actually demonstrate the required level of skill here!! Thoughts please? ? Ros
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Post by dtay on May 19, 2007 18:44:47 GMT 1
You are so right Ros - my sister and I had to question and challenge all the way, we suggested things that were turned down by some Docs and accepted by others. It is such a tremendous waste of time and energy to have to face these constant struggles as well as coping with the trauma of cancer. Doctors seem to be unable to look at the 'bigger picture' - they only see what is written before them in treatments and statistics. We need them to broaden their perspective regarding individual patient's circumstances - we are all individuals and not just a number on a page. I would love to see an improvement in 'bedside manner' and communication skills -- I have sat in a room with my father and a Doctor and havent had the slightest notion what we were discussing, important issues have been skimmed over quickly without full explanation etc. and I find this very perturbing when we are discussing diagnoses and treatments. I am not worried about asking too many questions and I do regularly, but I am sure many patients and carers leave a Hospital unsure of what is happening to them and why !!!
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Post by phillipa on May 20, 2007 13:20:38 GMT 1
Sorry about the tardy reply, We had a wonderful day yesterday and today kent is installing the new light fitting in the kitchen. Have been waiting four months for this to be done, Yippee.
While waiting to see Dr Ford, a lady behind me is one of those patients who would accept what she told. Why? To quote her, they are educated and they know everything. i turned around and queried her. She said well they are trained and we are not. I suggested she listen to what was said, go home and research it. her daughter looked at me and said can we do that, what a good idea.
The change in Kent since seeing Dr Ford is marvellous. His spirit is lifted and he says, he is not thinking I am going to die, I am living until I die. he now has control back and that makes the difference. We were out walking for over four hours yesterday and this something he hasn't done since Christmas.
Ros, it is a matter of educating the doctors, but I know from personal experience there are doctors who will never listen. the only hope is training them as junior doctors and hoping their attitude doesn't change as they gain experience. They do have ground rounds in the teaching hospitals, but to get the attitude right, it has to be done while they are students
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Post by phillipa on May 23, 2007 15:02:23 GMT 1
Just another day in the life of Obi One Bung Lung. we have been waiting for the appointment for the cryotherapy and it arrived this morning. 14 June. Not good enough for One Bung Lung he wants it done tomorrow. I rang Gill Stent ther Nurse practitioner, she thought it would be sooner. She rang me back and said it is the first free slot available, but she would talk to Dr Hunter tomorrow and see if he will slot |Kent in as an extra, I ring Kent and tell him this, but oh no, he's off....you know, targets, waiting lists, funding, the whole nine yards. I start laughing at him, he doesn't realise it, he's back fighting, but his last words chilled me, what do they want..for me to die then they can bump someone up the list..I got angry with him and siad it is 21 days to wait, Dr hunter operates one afternoon a week, the operation takes and hour to an hour and a half, so that is six patients a session, he has three sessions, Kent is number 18. Gill saoiid kent is at the top of the list if there is a cancellation, but no that doesn't soothe the savage beast..he wants this started...he's angry, that's good, he has the fire back in his belly, but is did sound funny, between coughs he's going ballastic and I afraid all I could was laugh..this is the fellow who was really depressed two weeks ago. he finished up saying in his broad Yorkshire accent,, noo woonder this blooody country is so bad in the klung cancer cure rates..there's not enooofgh bloody doctors and they doont' care a hoot. I gently reminded him that I settled for second regarding surgery on my foot and it took nearly 12 months for me to recover from that, so all he has to wait, is 21 days for the this and have the doctor he wants.
One Bung Lung's spirit is back and he wants his treatment now. We are lucky 16 March we got the diagnosis, it was confirmed on the 22 March and here we are 23 May and the tumour is still 1 x 2cm and N0 M0..trying to keep on looking at the bright side of life.
Blessed Be.
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Post by Deanne Jenkyns on May 23, 2007 23:23:21 GMT 1
Hiya Phillipa, Have been reading through your updates and I am so pleased that Kent is right back up there ;D What a trouper! You are both amazing. Tell him I am proud of the 2 of you!
Take care Deanne x
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Post by phillipa on May 24, 2007 14:12:29 GMT 1
Thank you Deanne. I pack Kent's ora morph in his lunch box, together with his fruit, yoghurt and whatever else, with a note to remind him to take it. I think, he thinks he has acheived something now he has his mobility allowance. It's these little things which make a difference. I think he despairs that I am cutting our little quarter acre of land, of course I can't do it like him, but after his effort and it takes me and hour and half, it took him nearly all day between coughing and puffing, so I told him to find out if motorbility will supply him a ride on mower. We did laugh at the letter, they are going to review him in 2010. Do they know something we don't? Optimism?
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Post by Deanne Jenkyns on May 27, 2007 10:41:09 GMT 1
Phillipa, Your posts always manage to make me smile. Your both amazing! Deanne x
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Post by phillipa on May 27, 2007 14:49:56 GMT 1
Deanne,
Friday was a scary day for us. kent came home from work vomiting, he looked terrible. I ended up getting our GP to make a home visit. Prescriptions written, me off to get the lot dispensed and I get back home, to be asked what is for Dinner, this from the man who has been upchucking all day, so being me I gave him beef and chilli, kill or cure. He gets up yesterday like nothng was wrong, he said he feels fine, My measure of him feeling fine? SUDUKO..yep, he's back working on the puzzles. Today he gets up, says his knees are aching, well any wonder, he sat around yesterday doing suduko and watching the cricket. it's a wonder his bum is not glued to his chair. Majopr improvement, I'm mkaing hin get up and make ME cups of tea. Well he has to keep mobile so his knees don't ache. He even got up answered the telephone, this is a shock. he generally waits for me to answer it. Now can i get him to prepare something for a very late lunch, no chance he's watching the Grand Prix.
We refuse to let this get us down. Kent can cough and splutter, he's still breathing and while he breathes he lives...if Jimmy can go salsa dancing, Kent can get his act together.
We are so lucky that Kent is fitter than others..
Hugs
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Post by phillipa on Jun 7, 2007 9:20:41 GMT 1
Another day, another disappointment of sorts.
Kent was admitted for the cryotherapy yesterday. he went down at 2pm and was back at 3.15pm, coughing voilently.
It turns out, they tried cryotherapy and ended trying to use diathermy. The Doctor said the tunour is like tapioca pudding and too jelly like to freeze, so they tried to laser it off, but as theit is similar to a balloon coming out of a tube, they can only get the surface of it and could not snare it at all. He said everytime he targetted it, kent has a couching fit and he could not cope with the coughing, he would get it lined up and One Bung Lung started. The next plan is to have another go with a laser knife, which is coming from Japan. it isn't in the country yet. It has been described as a spatula like scoop, so they will keep going across the top of the tumour and shave it off. It will most bprobably take anothr two sessions to do this, so I guess Obi and his tumour will remain attached to each other for a bit longer. of course we got the radical chemo and radiotherapy bit AGAIN.
I have been under so much stress with this I had an SVT episode (supra ventricular tachycardia), I haven't had an episode since I gave up work. By the time we got to the hospital I was grey and the heart was at 206 a minute. The nurse who was admitting Kent realised I was not well and took immediate action. She commented that one comes in for a procedure and the other ends up a patient. We both came home last night absolutely wiped out and neither was allowed to leave the hospital until both had been given the all clear. We were tucked up in bed by 9pm. What a day.
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Post by Deanne Jenkyns on Jun 7, 2007 11:33:17 GMT 1
oh Phillipa, massive ((((hugs)))) to you both. What an awful experience for you both no wonder you became ill. Nothing ever seems to be straight forward does it, Their always seems to be hurdles placed in our path. Take care of each other, I hope that you don't have too long to wait for the next attempt, gosh you must both be so exhausted!
Take care Deanne x
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Post by norfolkbirdie on Jun 7, 2007 13:13:20 GMT 1
Oh no!! What a rotten day for you both. Hope you feel a bit better today after a night's rest? Sounds as though Kent is having some "state of the art" treatment, cross fingers for next time!! Ros
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Post by phillipa on Jun 7, 2007 17:21:20 GMT 1
Today Obi is like a box of fluffy ducks, hardly coughing and we went out for three hours, without a coughing episode. I'm tired, but will recover and let's face it, our problems aren't as bad some others. I am hoping that laser knife arrives arrives soon.
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Post by dtay on Jun 7, 2007 18:56:35 GMT 1
Phillipa - what a time you are having !! Thinking of you tho' dawn x
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Post by phillipa on Jun 19, 2007 11:53:03 GMT 1
Life seemed to improve for a short time. Obi started to cough less and his oncologist up at Cookridge wants to see his scans from down here and he is sure there is more which can be done. Obi was feeling so well, he decided to get on and finish our bedroom and the entry. it was a full on weekend. he was tired but said he feklt better. His morphne has been up to 10mls 3 times a day. yester day he went off to work, was feeling ok until about 3.30pm and started vomiting. Now it could be the morphine causing this, but he developed that horrible sallow grey look. Last night was one of the bad nights, but we have had worse. he still didn't look too good when he went off to work this morning. I am waiting for that appointment for the next round with the laser knife. My heart flip flops so much these days. Obi told me to go ahead and get the werwitalls for the kitchen and utility room to finish those rooms and he said he would tackle them as he feels like it. I have been expecting to come home, but he must be feeling ok.
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Post by Deanne Jenkyns on Jun 19, 2007 16:34:25 GMT 1
Hiya Phillipa, I ams sorry that kent is feeling unwell, it could well be the morphine, everything is such a bloody worry isn't it. I hope that when he returns from work today he is a lot brighter.
Take care Deanne xxx
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Post by dtay on Jun 19, 2007 16:35:02 GMT 1
Hope Kent is ok when he comes back in ! How is his cough now Phillipa ? Love to you both dawn x
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Post by phillipa on Jun 22, 2007 10:25:34 GMT 1
I don't know whether to go out and kick the back fence, scream or what.
We have been waiting for the next appointment for Kent to have treatment with the laser knife on the tumour. i rang the hospital got through to head cancer care nurse, seeing she has taken over since Kent tthreatened to make a formal complaint and they have Dr Ford looking aftert him now. He has the fiorst treatment two and half weeks ago... we were told the next treatment would be two to three weeks, once the laser knife arrives. Guess what? No appointment and nothing planned. They forgot about him. I am now waiting for a phone call to find out what is happening.
I also told them, that Kent wants his scans sent up to Cookridge for another opinion. his oncologist up there says he wants to see them and he is sure they can knock this tumour out. it will be up to kent to accept the treatment offered if they decide this is a goer. We alsodiscussed PDT, something which was dismissed down here.
The other bit of news is the trail involving the golden balls is commencing in Texas. we should have accepted this invitation. they inject the gold covered glass balls into the bloodstream, these balls fall through the blood vessels into the tumour, they then locate the balls with a laser and then concentrate a stronger laser beam onto the balls and this then effectively burns the tumour out. Done in one session. All the experiments have been 100% successful. They say it should be ready for licensing in two years with the FDA. How long will take for it happen over here?
Why are we finding these things out, when the so called specialists don't even know about these developments? Same as the gold balls used for triangulation and plotting regarding radiotherapy treatment for prostate cancer.
Oh. the oncologist up at Cookridge said he would have apporoached kent's treatment reagrding chemo One cycle at a reduced dose to see how it went and then review the situation. he also the most he would have considered is four cycles. His aim, would be keep the paitient as strong as possible, not debilate, if the tumour is inoperable.
So here we are, expecting treatment to happen next week and it isn't so. Kent is left without anything and not even a review appointment.
If I don't heere anything by 4pm today, skin and hair will be flying.
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Post by Deanne Jenkyns on Jun 22, 2007 11:19:31 GMT 1
OMG Phillipa! It just get worse doesn't it! The care in this country is nothing short of pathetic! It really makes my blood boil, bet they were so matter of fact to. I hope that you get some answers today. That is really interesting about the gold balls. It is amazing what they are coming up with, touble is this country in stone age compaired to the states!
Take care Deanne x
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Post by norfolkbirdie on Jun 22, 2007 11:38:22 GMT 1
Hi Phillipa
What a ********* performance!! So sorry you are having this hassle on top of living with the disease. Not sure many of these hospitals/docs could manage there way out of their own homes. Make some hair fly!!!
I can empathise with you completely!!! Dave currently in hospital for tests and docs repeatedly say they are going to do something and it doesn't happen, I end up feeling like a pain in the arse for chasing all of the things they said they were going to do!!! Doc was supposed to come back and see us last night with results from latest CT scan, did he turn up??? NO!!! I don't think they realise what it means to us when they do this. I drove home mad as a wasp, swearing at every car on road out of frustration, helped to calm me down anyway. 6 weeks ago I asked for a PET scan to be done on Dave as they kept giving us a vague diagnosis from CT scan, since then I have reminded Doc at least 3 times and finally I rang the BUPA hospital at Cambridge where nearest mobile unit is and arranged it myself for next week, again, I could have done this sooner and maybe Dave wouldn't be back in hospital. If I did my job this way, would I still have one???
I read the article on golden balls in yesterdays Mail and it sounded great but really only targeted at soft tissue tumours ? Fantastic idea though and so simple.
I am seriously thinking of transferring Dave to another Oncologist, have you seen anyone at Cambridge???
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