Obi One BungLung update

[phillipa]

OOBL aka MOTH named Kent has had some good news via a circuitous route.

he had to have his brain found and lung function test on Monday, Tuesday he became radioactive (PET/CT Scan).

Yesterday in the mail arrives a copy of the letter sent to our GP from Dr Rintoul at Papworth. Nothing in that we didn't know EXCEPT when we asked the staging he said it hadn't been done, yet there for all to see squamous cell carcinoma of right bronchus intermedius causing right lower lobe collapse CT staging T2 N1/2 MX. OK so this is only a PD, I can accept that, but when we asked didn't he tell us. For two weeks we have had to surmise. The phone ring and it Georgina Howells the lung cancer nurse telling me Kent has an appointment on Monday at 3.15pm to talk about the PET scan. I got a bit upset, as she said he will also have to come in Tuesday for more tests. She was going to leave it at that, so I told I had the letter and why more tests if it is bad news. She had a look at the PET scan and said no it is all right, but they want to so an ultrasound endoscopy on a node which enlarged near his esophagus to see if everything is ok for a lung resection. i warned her that if has this endoscopy and he is not told the results before we leave the hospital on Tuesday, if he agrees to have it done in the first place, there will be no more tests. She said, well you had better change his mind. Excuse me? Kent was furious when he read the letter and found out what they thought the staging was. We replayed the tape of the consultation and sure enough he said they hadn't staged it at all, this is why then brain scan and PET scan had to be done. I know in the scheme of things this is a precaution, but, after being lied to regarding the PCa and finding out that they wanted to start hormone treatment just to meet government targets, we have an innate distrust of doctors.
When I told Georgina she just cant tell us an appointment has been made and then drop on us about being at the hospital all day Tuesday she said why not. I explained again that Kent works for Defence and it is not as simple as that when shifts have to be reorganised if there is not cover for him, there is no flying training, so she says can't he work part time? Am I missing something? I am trying to get hold of Kent late Friday afternoon so he can organize someone to come down from Scotland to cover him on Tuesday. Manpower is so short.

I am so grateful that Kent is able to work and we might have caught this terrible disease in the early stages when I read everyone else's story, but I think part of my problem is that they drag everything out and expect you to drop everything at short notice. I am due in Court on Tuesday also. Not for me but, representing someone, so I had to ring the Court and re-organise another time for the hearing and then notify the person I am helping. Six months ago I never thought I would so familiar with a court room and in a completely different field to my training. This work is voluntary and counts toward my paralegal diploma.

My Jedi Knight is dozing, he went out and mowed the grass and now is breathless again.

[Deanne Jenkyns]

Phillipa,
thanks goodness Kent has you on the case! It shocks me more and more the things I read. It is so annoying the way they leave people hanging and how they are so matter of fact about things. I hope you are able to get Kent sorted pronto. It amazes me the things we have to do just to get some answers. Keep us updated Phillipa. Your posts amaze me even though this is serious there is always a little humor in your posts and you always manage to bring a smile to my face.

Take Care
Deanne
x

[norfolkbirdie]

Hi Phillipa

I was reading your post when something about the diagnosis in your letter which struck me as odd?? Then I realised it was the MX at the end, this means that they don't yet know if it has traveled to anywhere else in body so can't yet stage it as 1,2,3,4. When they finish the tests then they will have either an Mo or M1, only when they know this can they stage it, so your Doc was right at Consultation and it has not been staged yet. What you have is an initial diagnosis of Bronchial tumour, squamous cell and approx size & lymph node involvement.

I learned this from Dave originally being staged as a 2 before surgery then being re staged after liver mets found. I think there is a great link which I have stolen for you from lchelp site which helps to explain staging really well. I hope I copied it right and it works!!

www.cancer.org/docroot/CRI/content/CRI_2_4_3x_How_Is_Non-Small_Cell_Lung_Cancer_Staged.asp?sitearea=

Hope this helps to make clearer the diagnosis of this disease and the frustrations of getting the Docs to communicate better with us . If your Consultant had explained it to you properly then you and Kent would have had a better opportunity to organise and plan, maybe???
Sorry, I have a real issue with the problems some Docs cause us through their awful communication skills and their ability to not see us as reasonable, intelligent people who have to understand their disease in order to fight it.
Hope all goes well next week.
Ros

[phillipa]

Today's result.

T3/4, N0, M0 BUT the tumour has penetrated the oesophegus and it is only a maophegustter of month. kent has an ultrasound endoscopy done this morning to see if the lung could be resected, but because the tumor has penetrated the wall of the oesophegus, there is nothing that can be done. They ahve made appointment for us to Dr Gilligan, rggarding palliative treatment options, if Kent so chooses. We see him next Tuesday. Theya re going to check the CT scans again to see if they can pick up pleural plaques and see if this is also related to his service in the Navy, where he was exposed to asbestos lagging. The irony of all of this not one hot spot on the PET scan or the brain scan, his lung function tests were good. They are completing the DS1500 forms for us. They are reluctant to do palliative radiotherapy because of the organs involved and if they manage to burn the oesphegus and trachea it will cause further complications. we have always said quality of life not quantity. We asked about Tarceva trials, but again, we want to to return home to Australia before it is too late. Knowing it is only a matter of months, despite the glass half full optimism. They have made the DVD recordings for us and will give us all the reports and notes to take back home when we are ready to go.

I am not sure kent wants to put himself through the Tarceva trials, so might just opt for palliative chemo. they have upped his ora-morph dosage for the cough. kents symptoms so far? Cough and mild indigestion. Bloody fantastic.

Obi One BungLung wont have to worry about his One Bung leg. Oh the good bit, he's going to work tomorrow and carry on for as long as he can. As he remarked today, we have both come through several war zones, lived through a nail bomb blast and now this tumour is going to do him in. Even the car transporter when it ran over us, didn't so us in. The Prostate Cancer is in retreat. Oh well see what next weeks brings when we listen to Dr Gilligan. I was so pleased the way the news broken, he told it to us straight and treated us like intelligent beings. Hurrah for that. Now I am going outside to kick the fence down.

[Deanne Jenkyns]

Dear Phillipa,
You and Kent have had so much to take in today you must both be exhausted. I am so sorry that you have received this kind of news, I know how hard it is hearing it, and even harder to come to terms with what they have said. You both have so much to think about. Even though we have been in this position and listened to them discuss with us palliative care I am at a total loss of what to say to you. If you need to chat you have my number. I cannot promise you any words of wisdom but I am a good listener and sometimes thats all we need...someone to listen.

Sending you both massive (((((((hugs)))))))))
Deanne
x

[phillipa]

Thank you Deanne. I think stunned is what I am feeling. It is the same feeling I had when we got the news when Neil our youngest drowned. I am here, but I am not here. Limbo Land or something like that. Kicking the fence only hurt my foot, so gave it up when the pain got too much and the fence didn't move. I don't know what to say, I don't know how I should be acting. Just knowing that you are out there helps and when I get this muddle out of mind I might be able to string a coherent sentence together to talk to someone.

THank you for caring so much

[Deanne Jenkyns]

Phillipa,
I know only too well that feeling of not being there and in limbo. It is like grief so I can fully understand you relating it to loosing your son. You will be in shock too. I know we have never met but I can feel from your posts how much you love Kent, it breaks my heart knowing that you are going through the same heartache we went through this time last year. Here for you if you need me.


Deanne
x

[dtay]

Phillipa - I was sorry to read your latest postings and am thinking of you both.
Dawn x

[norfolkbirdie]

Phillipa

So sorry to hear your news and can understand how you are feeling. Take each day at a time and savour them all. Keep Tarceva in back of your mind though, Dave was T4 No M1 and we were only offered Palliative care but Tarceva is reducing/eliminating his tumours!! I agree with you on quality and not quantity being the way to go.
Thinking of you both at this awful time.
Ros

[phillipa]

I want to thank everyone for your kind thoughts. A sleepless night for both of us, kent managed to drop off about 3am for two hours. He has gone into work this morning, which has given me time to howl at the Moon.

I have tarceva at the fore front of my mind , but there is no way can we fund this. There is no way we can raise the funds thanks to our wonderful fantastic ex bank. Don't worry I am on my way to bringing them kicking and screaming into a court room near us. I think I will put all my angst into this lot and make them suffer.

I made sure I did not cry n front of kent this morning, but when I was talking to someone I don't even know I found myself completely breaking down and this is so unlike me, i couldn't talk for sobbing, but you all know what that is like having been there. i thought I would be stoic about this but when I had to leave that yesterday because I need to vomit, I knew I wasn't going to hold it together.

Thank you for being so caring and allowing me to unburden myself.

Soft hugs

[Deanne Jenkyns]

Dear Phillipa,
You cry scream and howl as much as you want, you don't think you are being strong but you are. You both have so much to deal with right now. It makes me so angry that people in this position have to worry about trying to find funding for a drug! I wish I could do something more to help. Thinking of you both.


Deanne
x

[phillipa]

It's amazing the difference a day makes. I have a head colds, I am convinced this was self induced with my pity party yesterday. i feel like Ihave gone through a wringer and been dragged out through the bramble bushes, but I am not crying today. i am now on my way to taking back control if I can.

OBI One BL got up this morning as chirpy as box of fluffy ducks, he even looked better. He made the early morning cuppa, while I cut up the fruit salad for his morning tea. I made breakfast and we both laughed. I am to get our Wills updated, as I do the work for this myself, it is going to be easy, I know the para-legal course would not go a miss. Just have to go an purchase the Will Forms at Staples.

My mad girlfriend Lorraine, has proved invaluable with her network. Has a friendly undertaker in her thrll, still wondering why a Real estate Agent would have a an undertaker in her network. She is going to handle our house sale for £50.00 and has a solicitor who will act for us at mates rates. I think she is organising Obi's funeral. LOL..I have told her to hold off on that until he has carked it. My daarling brother who works with AIDS/HIV clients has offered us his house back home and has even spoken to the Palliative Care Centre in Lismore 15 minutes from his house should we need it. All Ihad to do was talk and ask for help. Something I find very hard to do, but yesterday it was cathartic for me and family members remarked how unusual for me to ask.

Now on with the Tarceva campaign. I am going to do a letter box drop regarding this and I have an appointment booked with my GP to talk about this. Seeing I used to overseas the GP training in this area of the world, I might as well use the relationships built over the years.

If I can wear away the rock regarding prescribing and funding in this corner of the Kingdom, it might help others elsewhere. Now where is that Cancer Tsar appointed by one T Blair?

[Deanne Jenkyns]

Hiya Phillipa,
I think we have all been to that pitty party, I'm a bit of a pitty party animal! It is true though it is amazing what difference a day makes but it is also amazing how crappy you can feel after having a better day. You are being far to hard on yourself Phillipa, you have had a dreadful shock and it takes time for news like this to sink in. Sounds like you have no end of support which is great! I did my best today with the BBC to highlight the fact that we were not alone in this plight I just hope that they show the most important bits and don't condense it too much! Take care of each other. Massive (((((hugs))))) to you both!


Deanne
x

[dtay]

Phillipa you have exactly the right attitude - go girl !!
Dawn x

[phillipa]

I am armed with more information than I had yesterday. Well all the practical things anyway.
Now it is amtter of waiting until Tuesday to see what Dr Gilligan tells us and see what Kent wants to do. i had a lovely conversation with my daughter yesterday, she rang from perth, we normally email each other but she wanted hear how I sounded. I held it together talking to her, but cried my heart out last night.

There might be a bit of light at the end of a very long tunnel. I have sounded out the the NZ High Commission regarding help in getting Kent's superannuation , released earlier. It is supposed to come to him as a pension when he turns 60, if he dies, I get the Widow's portion, which is a lesser rate for as long as I live. Well, let'sput this in perspective. What about releasing a lump sum immediately and we could possible fund Tarceva. The High Commission has given me the telephone number of the NZ Lawers Society here in London, so I am making a phone call today and see what can be done. it's amazing what a bit of lateral thinking does. I am not sure if this can be done, but nothing ventured nothing gained. I have also contacted the Naval Association to help push this.

I have a heavy head cold and for a change it was me coughing all night. Guess who gave me the cole? Obi One BL. i though he had a cold last week, but he said no. I don't think he realises when he has a common cold. I haven't been anywhere I could catch this, so it has to be from him. He is now sneezing. I gave hinm some Night Nurse, he settled down for a good nights sleep, who was up pacing the floor? Yep.

Deanne, when will they airing the interview, because I might have missed it, if it was last night?

[dtay]

keeping fingers and toes crossed for the cash to come thru for you.
Dawn x

[Deanne Jenkyns]

Hiya Phillipa,
Really hope that they come through for Kent. Will keep everything crossed. The news will not broadcast until they interview the lady in scotland doing well on Tarceva. It is local BBC news but the BBC national news are coming to film next Thurs.

Take care
Deanne
x

[Deanne Jenkyns]

Hiya Phillipa,
Been wondering if you had any luck with in getting Kent's superannuation released? Been thinking about you both. ((((hugs))))



Deanne
x

[phillipa]

No as usual with government departments they wont budge, but we have the Head Chaplain of the Royal New Zealand Navy stepping in. Sometimes it pays to know people in high places. Sent the email over with all the details.

Thank you for caring Deanne

[Deanne Jenkyns]

Hiya Phillipa,
I hope he is able to apply the pressure and get them to agree. It's so bloody annoying


Take care
Deanne
x

[phillipa]

Yesterday was a fiasco. I have to be very careful as these boards can be read by the public so I will try to be circumspect.

The options, Radiotherapy and chemo - aggressive.

I thought we were there to discuss palliative care and to me palliative care means gentle. This expert offered a possible two years without the quality of life.

My cousin who is a radiologist and well respected asked me the question this morning, 'why the hell are they saying radiotherapy, with the tumour in the position it is. Are they condoning damaging the esophagus, to to shrink the tumour?'. This was the very question I asked yesterday and when I asked after the esophagus is damaged what happens then? We get a shrug of the shoulders. Clearly this man is not happy that Kent questioned the options . Kent stated the only radiotherapy he would consider is brachytherapy, this man ruled it out completely and kept pushing ERBT with a large margin. I nailed him and asked about the side effects and he reluctantly admitted spinal cord damage also.

He did not like me mentioning Tarceva and tried to challenge me on it. I would not be drawn, except to say this is the Herceptin fight all over again. He did not want to see the email from Roche.

Kent said he will have chemo only, but will pull the plug on it, if it aggressive. he is supposed to have six cycles of Vinorelbine and carboplatin.

Oh the other thing, he said Kent is too fit.

I do not like or trust this man, he actually said we could to Leeds if we preferred. We haven't ruled this out yet.

I think he missed the whole idea. QUALITY OF LIFE for whatever time is left. Why oh why are the hell bent on trying aggressive treatments and be d**ned with how the patient feels? Both of us are extremely upset by this man. he might be well respected in his field, but he certainly did not offer palliative care, well our definition of palliative anyway.

He is a Radiological Oncologist. Oh as an aside when I mentioned the, dosage, 'accidents' and 'supervision' of the administration of ERBT, he would not answer, except to say he is part of a team.

I did ask do they use the gold beads as markers before to plot the axis of the beam and he said 'No,. We ask the patient to lie still during the treatment'. So obviously the plot and that is it for the course of radiotherapy. Too risky as far as we are concerned. This is also supposed to be a Centre of Excellence. It might be, by whoever's definition, but not by overseas standards of good practice for focusing.

he wanted out of there, it was obvious.

Oh another belitting incident. he asked Kent did he understand why he (Kent) was there, so Kent told him back in medical terminology, this happened at the very beginning of the consultation. he also took great pains to explain who he was and what he could do. his mind was made up before we even entered the consultation room. he wants to treat Kent aggressively, after all you don't get such a 'fit patient' all the time.

Kent is terminal, we accept that, but by golly, they are not going to ruin the time he has left for their own purposes.

I am very angry. Oh he also doesn't like that fact that I know a little bit.

Why do they think, patients have to worship them and accept what they dole out as 'good' treatment.

I could say more, but it could end up libelous and that Is something I do not want to do, as it could harm the site.

So Tarceva is ruled out even as second line, because Kent is too fit.

[Deanne Jenkyns]

Hi Phillipa,
I have just read through your post and cannot quite believe what I am reading. I bet your heads are all over the place. They don't like being challenged do they...well tough. It makes me so angry! To fit for Tarceva is outrageous. You know you think you have heard it all and then something comes along everyday to top it! It's so exhausting all this, my heart goes out to you both. Just wanted to let you know I am right there beside you fighting for what's right. I have applied to be at the hearing at nice on June 6th representing members on these boards. Fingers crossed I will get a place, There will be press there too so hopefully I will get to make some more noise


Take care
Deanne
x

[phillipa]

My cousin in Australia, cannot believe this option was even discussed. his words are, you aren't bloody stupid enough to let them radiotherapy in that area are you? I assured him that it isn't going to happen and Kent is going to remain in control all the way. He also said he wasn't happy about the chemo option being offered either and he is a specialist

[dtay]

Phillipa - stick to your guns and make sure they treat Kent the way he wants to be treated.
Love
Dawn
x

[dtay]

Hi Phillipa - was just wondering how things are with you and Kent ?
Dawn x