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Post by phillipa on Sept 17, 2007 16:49:23 GMT 1
Hello All,
Everything is fine with us, we just need a couple of days to ourselves. I have been feeling so down, One of my dearest friends in the States has developed secondaries and to quote her' I am just wasting away'. She is starting back on chemo this week, but at lower dosage and no radiotherapy. I feel so bereft, because I can't get on a flight to Florida, to hold her hand. The doctors pronounced her cured 'three months ago' and I had a bad feeling then.
We went and saw our favourite oncologist. Left home at 7am for the 9am appointment. Got to Addenbrookes at 8am and got a disabled car park yippee and first there. kent had his blood test, his weight checked (lost another 3 kilos) and chest xray. X-ray fine, no developemnt, bloods low, so he has to have another test on Wednesday before his surgery, if still down no surgery, no dentist on Thursday and possibly no chemo on Friday this week, but Dr Ford thinks he should be on the way up again in couple of days. Someone slipped up somewhere, as Kent was making his next three week appointment for the review, Dr Ford caught up with us, guess what someone had booked him for chemo Tomorrow. Hmm we were not told, and I wouldn't have rung until Wednesday or Thursday to check what time for Friday. We were told All DR GILLIGANS have their chemo on a Tuesday...ummmmm..not Dr Gilligan's patient. The addenbrookes file shows Kent is.....I give up..
Kent said he feels the same way as I do about that place, it is not conducive to the patient's well bieng, it is so noisy and there is no clear traffic flow. I was exhuasted when we got out of there at mid-day...didn't get back home until 2pm I hate the A14......it's such hard work. So that's it for the Dynamic Duo at the moment.
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Post by Deanne Jenkyns on Sept 17, 2007 17:03:26 GMT 1
Gosh Phillipa, I feel exhausted for you after reading that! I'm so sorry to read about your friend (((hugs))) I'ts so hard to stay up beat when you hear bad news, seems to be all I hear these days. Hope Kent is able to go ahead with the next lot of treatment. Keep us updated.
Deanne xxx
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Post by phillipa on Sept 17, 2007 17:10:09 GMT 1
I should learn to proof read what I type. I am glad you understood what I posted.
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Post by dtay on Sept 17, 2007 17:17:09 GMT 1
Still loving your updates Phillipa - they are great. So sorry to read about your friend. dawn x
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Post by phillipa on Sept 18, 2007 9:40:39 GMT 1
Thank you Dawn. it is a bummer about Kay, she is such a feisty lady, she is 76 and up until this she was out Bass fishing. I hope I have her energy at that age. I don't think she will really rally from this round. i do hope I am wrong. This is the lady who would go swimming in the lake which has a resident alligator, she reckoned that if the bass were there, the alligator wasn't interested in her. 16 years and she swam every day..I have some amazing photos of her.
Oh her other theory was, the alligator was more interested in hanging out in the lawyers car park and hoping for free feed of a Lexus driver...she reckoned if he got one,he would be so disappointed as it would be all sh*t and hot air.
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Post by Deanne Jenkyns on Sept 18, 2007 10:43:28 GMT 1
OMG, she sounds mad but amazing lol! Your posts always make me chuckle Phillipa! I cannot wait to meet you in person!
Deanne xxx
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Post by dtay on Sept 18, 2007 11:16:55 GMT 1
Fantastic !! She sounds like someone I would love, too !!! ;D x
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Post by phillipa on Sept 21, 2007 11:05:42 GMT 1
I missed yesterday, Kent and his lung..geeezzzz..actually it was his broken tooth. Gone, over and done with and he is in love with his lady dentist. Oh well, I knowwhat turns him now, must buy a pair of dental pliers, I can inflict pain too.
Addenbrookes today second cycle of chemo.
Kay is so funny, she wore a daiper to the doctors the other day for her immune shot, she had diahorrea and decided she didn't want any accidents on the way, she emailed me as soon as she got back and said that there was an incident. i asked her about the immune shot, apparently it is a cocktail of drugs, antibiotics and the like. She then said she was having a pina coloda and bugger the doctors.
We are taking two empty 2 litre bottle with us today. if we get stuck on the A14 and kent's bladder is bursting, he wont have to go nettle bashing this time. It was bad enough when the kids were little with the chorus, 'I need to go to the toilet', hearing it from a 59 year old man, is really pushing the bounds of reality. You wonder if you are dreaming.
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Post by Deanne Jenkyns on Sept 21, 2007 13:42:09 GMT 1
Phillipa ;D ;D ;D ;D You should be a stand up comic girl! You always make me smile ;D It is good that we can laugh through this otherwise we would probably go insane Deanne xxx PS. I have not sent out the other tickets yet, I will send them over the weekend
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Post by phillipa on Sept 22, 2007 12:19:15 GMT 1
Another day and One Bung Lung is sitting in his chair, looking like somethng the cats has dragged through a hedge backwards. Last night it was hot flushes and trots to the bathroom. He didn't want the ceiling fan turned on, so left him to it and tried to get back to my dream. I wish he would do it quietly. Didn't stop him from downing a full English breakfast this morning. One the cats looked him and meowed at him , then turned in her own imperious way and stalked off. Kent reckons I have trained the cats to give him a hard time. I don't know where he gets that idea from.
Deanne you are so right, if we don't laugh through this, we would all go mad.
Oh Addenbrookes, I wish I could blow that place up. We had the blood tests from Papworth us. Nothing ticked in the book regarding Kent needing a blood test, now why didn't this happen, guess the same way, papworth wasn't notified and if we hadn't mentioned it, nothing would have been done. I digress. Appointment 1pm, I mention the blood test otherwise chemo might not be able to be done, we wait half an hour, she comes out and calls kent in, to do the non-existent request for blood. kent reminds her we have the results from Wednesday with us, but oif course they have to do ther own. i think she saw the look on Kent's face and grabbed the test result out of my hand, we wait another hour it is now 2.30pm, she comes back and tells us it is ok. 3pm we are called in for the chemo to be administered.
Took matters in to my own hands, regarding next Froday, I suggested if they want kent at 11am for chemo, might they organise the blood test an hour earlier? Revolutionary suggestion. So I then reorganised the next Monday appointmentin October the same way, bloods an hour before we see the onc, ta da, easy isn't it? Not the other way around and then get held up with oncs appointment because the blood test results aren't back from the lab. A gentleman sat there and said, why haven't they done this before, and I couldn't help myself, I replied, because they don't know how to forward plan. His wife glared at me.
Now to reorganise that Day Ward. it is unworkable and it needs to be redesigned, with a bit of thought, they would be able to function more efficiently.
Oh the specialist nurse?? Five apointments and still no sign of her. Now didn't that specialist nurse on Curly's blog say they are such efficient and caring people? Thank goodness we are able to sort things out for ourselves, otherwisae we would be in a mess. Do you know, not once has anyone asked how I am coping? Papworth yes..Addenbrookes NO. it could be that it is because we don't regard ourselves Addenbrookes patients and have to go there by default. Grumble over. I hate that place.....
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Post by dtay on Sept 22, 2007 20:48:27 GMT 1
Phillipa I think you will be running this country one day - put yourself up for the vote and I will back you all the way !!! x
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Post by Deanne Jenkyns on Sept 24, 2007 19:01:45 GMT 1
Hiya Phillipa, It's outrageous how we have to push for and question the simplest of things You are on the ball as usual! Go Phillipa! Deanne xxx
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Post by phillipa on Sept 25, 2007 9:48:13 GMT 1
Don't we fight in our own way for what is right and proper? Deanne, look where your fighting has gotten you. Something I bet a lot of others thought could not be achieved. You took on the Establishment proved your point and made them rethink, even thought they tried to push it further up the food chain, to get out making the decision for themselves.
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Post by phillipa on Sept 30, 2007 9:51:37 GMT 1
Kent had his top up on Friday. it has hit him harder than last time. he is not nauseaus, just generally feeling of being unwell. I think his is depressed but wont vocalise this. he mentioned to the nurse administering the top up, that he has been feeling unwell and she did not respond in any way. it is so frustrating. he told her he did not need that anti-nausea tablets, so she was happy with that. he just looked at me and just said' don't get me started'. Thank goodness it was just a ten minute push for the top up, but despite everything we did not leave that place until 1.30pm, when the appointment was 11.30am and bloods at 10.00am. of course bloods weren't taken until 10.45am which then put everything behind time. We got talking to a couple of other patients and one man said, our expectations aren't too high at the best of times, so we aren't disappointed. They do not like Addenbrookes at all, they recounted when his wife was an inpatient and the lack of response from the nurses and the even the fact of the non-existent supply of food for an inpatient. Addenbrookes claim food is available for patients 24 hours a day seven days aweek,. I inquired did they complain and they said no, it would fall on deaf ears. Now they just come along, ring an hour before to say they on the way in the hope that they wont be delayed, but it has never been case. Oh, the lady has never met her specialist nurse either, then another man mentioned the same thing, so that makes three of us.
I have been re-reading the literature given to us at the beginning of the chemo and it is so general.
Kent is not well at moment and he wont let me ring the hospital, it is a Sunday, so really what can they do when all the services are closed and his words, 'he will only get a dogs body'. I have him tucked up in bed and dozing and this is not like him at all. He went to bed very early last night. he says he is not getting out of bed to be dragged to the local hospital when all they worry about is target times and he certainly doesn't feel well enough to drag down to Addenbrookes, even if they can help. Oh the out of hours GP service? We have to drag into the local hospital for this. kent never is bed after 8.00am.
I just don't know what to do. I hope this passes.
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Post by Deanne Jenkyns on Oct 1, 2007 22:29:34 GMT 1
Dear Phillipa, sorry Kent is feeling unwell, Is kent doing any better?
Deanne xxx
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Post by Deanne Jenkyns on Oct 5, 2007 19:56:42 GMT 1
Hiya Phillipa, hope that Kent is doing better today, We are away for a week tomorrow and just wanted to say been thinking about you both.
Take care Deanne xxx
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Post by dtay on Oct 5, 2007 20:48:51 GMT 1
Phillipa Hope Kent is improving - thinking of you both and sending ((hugs)). Dawn x
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Post by phillipa on Oct 6, 2007 17:18:23 GMT 1
It's blooming marvellous the difference a day makes. My walking skeleton is ok today. Says he is feeling fine. We are off out to dinner this evening, some frineds are over from OZ, they have been on self drive tour of England and Scotland, so it will nice to hear the aussie accent tonight. Not so sure about the bone man though. he just might scare them.
I have a new decoration for Halloween, luminous paint, Obi and a green jack-o-lantern. That should give the kids areound nightmares for year....
Deanne the tickets arrived, thank you.
Dawn, he is improving in spite of himself. LOL...
Soft hugs to all
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Post by dtay on Oct 6, 2007 21:09:45 GMT 1
Great news Phillipa - enjoy your dinner x
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Post by phillipa on Oct 9, 2007 13:58:22 GMT 1
Went for the consultation yesterday before starting Cycle three of chemo.
Obi's white blood cell is low, down to 0.7 and he has a cough. So after examination it was suggested he goes into hospital for IV antibiotic, just in case there is an infection. Of course that idea was immediately scotched. Obi stated emphatically' no way will be admitted to Adddenbrookes or Hinchingbrooke. it will be Papworth or nothing, but I am not going to have antibiotics IV with out proof that they are needed,' so after discussion he is home and on clarythromycin and if white cell count is up he will commence the third cycle on Friday as expected and the chemo dose is being lowered further to 60%. I am sure he is not tolerating the Vinorelbine. They started the push last time and the coughing started and has not let up. Ther was nurse in on the consultation yesterday, she never introduced herself, so have no idea who she is, but she was certainly trying her best to do what ever it was. If this is Obi's specialist nurse, he wouldn't know.
Got there before 10am for bloods, weight xray. Got called in at 10.10 for weight, then had to hang around until 10.20 for bloods and then he had to wait an hour and thirty five minutes for the his xray. the appointment with the consultant was for 11.00am and the blood results and x-rays should heve been done on time. We didn't get in to see Dr Ford until 1.35pm and he kept apologising. I was fuming because I had a 2pm appointment back in Huntingdon.
We were told by the same nurse who was in on the consultation that sometimes these clinics can run up to four hours late....a notice about them running late would be nice, but no just let everyone sit around and get more distressed.
Kent has taken two lots of the antibiotic and seems ok on it. He warned Dr Ford the minute he starts to get sick on it, he is coming off it. Dr Ford asked him to take the antinausea tablets if thei happens and continue with the course, but if Obi is vomiting on the stuff, why should he keep on with it and suppress the vomiting. Clearly this is a reaction to the drug. Imagine what they would do if he was hooked up to an IV, everything out of his control. This not what we are about.
Of course I had to chip with Deanne's success regarding Tarceva and Dr Ford agreed that we do have Tarceva to fall back on. He was worried Obi was going to pull the plug on the chemo. If obi has has a reaction to the vinorelbine on Friday the Registrar will be called as Dr Ford wont be at Addenbrookes.
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Post by dtay on Oct 9, 2007 21:38:26 GMT 1
Keep up the good fight Phillipa. Dawn x
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Post by dtay on Oct 12, 2007 18:45:37 GMT 1
Hi Phillipa, Was wondering how Kent is doing ? Much better I hope. Dawn x
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Post by phillipa on Oct 12, 2007 19:38:16 GMT 1
What a week this has been. Thank goodness Professor Eisen stepped in.
Kent started getting high temperatures of an evening, fine during the day but about 6pm it kicked off, Happened Tuesday night Wednesday morning he was fine, Had dinner Wednesday night and the temperature started rising and he was looking really ill. When his temp reached 38.7 I had enough and rang Addenbrookes. Of course the usual you will have to bring him in and he will have to have IV antibiotics. They weren't interested in my question could this be caused by the anitbiotics. of course not, I am just a silly wife who knows nothing. i explain no way can we get to Addenbrookes, well you will hav to get your GP out. How silly are they, do they think we live in town with a GP on tap after hours. i explain we are out in the Boonies and GP's don't make after hour house calls, so I stood there and issued an ultimatum, we are going nto A & E at Hinchngbrooke (quelle horror). We get in there about 10.35pm explain what is going on, by now the temperature is 39C. A & E doctor has look at kent, can find no couse for this, bloods taken, neurophils back up 3.4, xhest x-ray clear a few rattles lower right lobe, I roll my eyes heavenward and throw in a suggestion, woud that be because the that lobe is affected by the cancer? DUH...he looks at me as if I have come down from the planet Zock..oh we will have to admit you for treatment, treatment for what queries Kent? Oh we don't know, but IV antibiotics will clear up whatever it is. Hang on we will get a urine specimen...(it never happened). A & E doctor gets his colleague, nice young lady from the medical team, oh yes we have to admit you because if you have turn it will be quick and we need to start antibiotics immediately. Now this admittance would be on a general medical ward, with Kent exposed to anything floating around..pardon me, is that a good idea if you don't know what is causing this, well this is standard procedure she says. Kent was saying no way, if you admit me, it will be the beginning of the end if I come into this place, every tme I have been admitted, except once, I have been discharged with an infection needing antibiotics to cure it..she looks horrified. I ask well if you admit, how long, oh 48 hours she says and then we will only discharge if we are happy. No way says Kent I am heading home. So temperature taken again, he signs the get out of jail form (discharge against medical advice) and she says, well you could die, Kent replies I thought Terminal Cancer is going to kill me anyway..she didn't get the joke.
I ring Papwroth on Thursday morning, you have to take him to addenbrookes to be admitted for IV antibiotics, why, his temp 36.6 this morning and he's had a full English Breakfast. An hour later I am phoned back, it is Tim Eisen. he had a look at the bloodwork from Hinchingbrooke and says, everything looks fine. He reiterates Hugo Ford is away, but this is what we are to do. Chemo to continue with antibiotic cover. He rings Addenbrookes and issues the instructions for today. We get down there, bloods taken (neurophils are now 5.4), Kent's temperature is taken 36.7 and urine specimen collected. Chemo at 60% today and Kent is like a chirpy chicken.
The cause of the high temperature?It is an antibiotic spike, this sometimes happens and now things have sorted themselves, as nothing has shown up in the blood profile and the urinalysis was clear, but to be on the safe side stay on the clarithromycin until Monday.
So the silly wife was right regarding this. As Time Eisen said, the A & E doctor was following the protocols laid down, but again the patient was not listened to and could have ended up in worse state with unnecessary antibioticsand exposed toother infections d**ned if you do and d**ned if you don't.
Kent is returning to work on Monday, he says he is sick of sitting around feeling sorry for himself, so he has promised if he gets tired he is coming home. Six weeks of this has taken it's toll on both of us, so we getting back into what passes for normality.
Third cycle started, one cycle to go.
Oh Deanne I mentioned your name and Professor Eisen knew who you are. LOL..
Lower dose of Vinorelbine and carboplatin and no coughing, so that has to be a plus.
Dawn thank you for asking, so the end of a hairy week.
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Post by dtay on Oct 12, 2007 20:00:50 GMT 1
Oh my goodness Phillipa, what a journey in the space of a few days. So pleased that you stuck to your guns - goodness knows what could have happened if you had let the A and E Drs take over !!!! So pleased that things are getting back to normal for you both.
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Post by phillipa on Oct 15, 2007 14:13:45 GMT 1
Kent went into work and they sent him home, said sick note states 12 weeks, so twelve weeks off, now I am going to be driven around the twist with him under foot moaning and groaning about how bored he is. i reminded him, this time last week how lousy he was feeling and he comes back with, that was last week. Now I wonder if I mention the tiles waiting to be put up in the bathroom, the skirting in the Summer Room, the two new light fixtures, needing to be installed and the two door frames which need painting, as well the curtain rods to be put up in the Summer Room. I have plenty to keep from being bored and if all that gets done there is the oven to clean.
There's the chemo top up push on Friday to liven things up and break the routine.
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