Saturday, 27 February 2010

I Can Fly

Lorraine and I had a mad half day in Dublin and enjoyed every second of it.  We set off in earnest and to be honest fear on Friday up to Newcastle Airport.  Needless to say our flight was late and I didn't ring hubby to let him know.  When we finally touched down in Dublin over an hour later I rang home and hubby said he had started to worry but checked the Internet and realised the flight was late.  Why was he worried, it was my first flight since the operation and the only way to test the airspace in my chest was take the flight.  John Edwards was confident that flying wouldn't be a problem now but to take a short haul just in case.  I was a little nervous myself and going up past the 11,000 I did have a little ripple like the feeling of the sea running over your body when you let the waves wash over you.  Coming down was a little bit stranger and I had a discomfort for a few minutes only.  On the way home I didn't feel anything different, could have been to do with the few drinks I had the night before!

My first thoughts was sunshine but we are still waiting for this letter from our medical team to say that I need morphine for pain so that I can send it off to Dubai so I can get in without being locked up.  I only requested it back in January so its only a month so far.  I should probably have asked John Edwards to sort it as it may have been quicker .. the old saying ask someone who never has any time and they will always get it done, ask someone with time on their hands and they haven't got time to do anything.

It has been a sad week for news as well, when I was first diagnosed I went through Chemo with a guy called Chris, and subsequently we keep in touch.  He emailed this week to let me know that the damn cancer has grown and needs to go back on chemo.  For those that don't realise, he has had a good remission as we finished chemo around April 05, so that's nearly 5 years of life without treatment.  The Alimta certainly did do a good job for him, wish it could stop the cancer all together.

I have also heard that another of the meso crowd has lost his battle with meso and I would like to extend my thoughts and sympathy to Paul and his family.

Another bit of bad news is that another of the meso circle can't undergo surgery, the meso has spread and not suitable to be removed.  What I feel is numb for this person, why wasn't the amount of regrowth picked up earlier, surely the scans or xrays show movement long before we feel the results of it.  There again I kept saying it was growing but my oncologist kept saying it wasn't and before I knew it I had 2 cm of new growth where there was suppose to be none. 

It's not good enough really, meso cases should be scanned every 3 months, sod the costs, the government wastes money on all sorts and  most people who have meso have worked their entire lives paying into the system that should be looking after us.  No I promise I am not going off on one .. its just ...

On the good news NCARD could be getting government money so fingers crossed, I hope you have visited the website, although still in early days, it does have information.

I have also heard that John Edwards clinic for surgery has had quite a lot of new cases recently, bad news in one sense as that means either more people are being diagnosed or other treatments have failed.  I hope that for these people, John will be able to remove the cancer and give them a new remission time.  Taking Alimta a second time worries me a little, I'm not sure whether it makes the meso more aggressive as for myself it certainly didn't slow it down, but I'm no expert.  Rather than going through it twice I wish I had gone for the option of surgery and had the pleura removed but I'm not sure whether that was been done in 07.  I do know one thing I didn't want to go through with the EPP which was on offer, maybe I made a big mistake but that's one thing with meso you can only do what you think is best at the time, you can't go backwards and there really isn't any markers to say which way forward is the best.  But in hindsight I wish I had looked up surgery in 2007 as I think the less treatment you have beforehand the more chance you have of a long remission afterwards. 

To those thinking of treatment, go with your gut instinct but make sure you research every avenue that may help you clear your body of this cancer.  Oncologists mainly work with chemicals and discount most other treatments, it is down to you to push for information on other forms then and only then choose what you feel is right for you.  When you are first told you have meso your immediate thoughts are chemo and you look no further, with meso you aren't dealing with normal cancer, research, seek advice from other specialists then make the choice, unless you are near death a couple of weeks either way will not make that much difference to the growth of the cancer.  I still wonder that if I had gone under the knife back in 04, (I didn't like the odds of 50/50 off the operating table .. I wasn't brave like Graham Brown) whether I would have stayed clear of the meso without further intervention.  See doubt is always with you, but then I also remember the father and son who both went through it and both died within 18 months as the cancer spread to their abdomens.  Nothing is simple with meso is it.

I am off to look at hotel pictures and maybe send a couple of emails .....

Thursday, 18 February 2010

Belated Scan Results

It took quite a few years but I now have a good compliment of doctors on my case, locally my GP's then my MDT Team which is Dr A Owens (a brilliant heart surgeon from James Cook) and Dr Abassi - I haven't got an oncologist on the team and would presume that I am still privately under Dr A Hughes.  In Sheffield I have the delightful and talented John Edwards and in the USA Prof Abtin.  What more could a girl want and I must say that they are all very good, accessible if needed, and on good terms.  This was certainly put to the test on Monday night.

I received an email from Prof Abtin which started off with general chit chat then to the scan that he had finally had chance to have a good look at.  He wrote that I should speak to my oncologist about starting chemo again as new growth had appeared around lymph-nodes etc.  He also said that I could fly but this didn't stop The bottom of my world falling apart in an instance, I actually rang him and he said you sound down, I said well you have just dropped a great big bomb shell!  He apologised for having a big mouth (Americans expect to hear everything on a report), but told me not to worry, I have a growth near my heart that he can ablated and to get sorted with chemo to hold back the new growth.  Gary forwarded the diagnosis on to our good friend Doc Andy Owens, this was about 9.30 pm.  Neither of us slept much and the next morning checking the email Andy had emailed back several times upto midnight and then rang at 8.00am.  He had called his team together and couldn't find the evidence to back up Prof Abtin and told me their was nothing to worry about.  Poor Andy hadn't slept much either, he must have pulled my scan up and gone over it with a fine tooth comb too and then calling his team together for an early morning meeting makes me feel extremely humble.  I hadn't contacted John as he still hadn't come back with his views on the scan so although feeling relieved that Andy hadn't found anything but unsure because Prof Abtin had.  Not a nice place to be in as I have the greatest respect for them both and can't believe one would be off the mark. 

Then on Wednesday John emails me, poor guy has been overworked and also spending alot of extra time trying to get the NCARD up and running.  He gave me the good news too about being able to fly but to try a short flight first.  It was good to hear that my melon air space was now that of a cherry tomato and had improved much better than his expectations, together with he found nothing wrong with my lymph nodes under my arm, that confused me because I didn't think or know about my lymph nodes under my arm.

I then sent back the email from Prof Abtin and what Andy had said, to which he came replied immediately and said he would review also. 

The name of the game with meso is to stay one step ahead and at any early stage get things sorted, I know we can only buy time but after spending the last 12 months in recovery I am not ready to start thinking the worst and have this bloody cancer taking a front seat on my health again.  Yet, if there is a little doubt to whether it is growing again then I will be on the plane or under a knife - anything to rid my chest of new growth, we all know how that one little cell can multiply and how fast the little buggers can move.  Although on the phone Prof Abtin said he did think it was moving at a very slow pace, maybe no more than 1mm and wasn't in any hurry to ablate.  Remember ablation is standard practice in UCLA after surgery, any new signs are eliminated as they happen. 

My next scan is due in March, the one in December was taken on the back of the August one showing some difference on lymph nodes but again that one was a conflicting report between Bishop and Sheffield.  I wish there was a different test they could do, like a cancer marker you can have with most other cancers, yet our only sure way of detection is CT or a scope.

Tuesday was a wash out for me, I was cold, my back was frozen and this bloody heartburn seemed to be yelling at me.  No the tablets aren't working but if it is a couple of years worth of damage a tablet isn't going to fix the problem overnight.  I took a muscle relaxant on Tuesday night but had another sleepless night last night and the last thing us meso guys needs is to get run down.

Have found out today that my appointment next Tuesday is just a consultation so I will be no further forward and will probably be on a long waiting list to get the camera but at least I can stop worrying about the procedure for quite a while.

Our meso mate Danny is finally going to see John, hopefully his scan will show that surgery will be an option then it's down to what Danny want's to do.  I gave him a quick ring last night and he sounded very upbeat, I think relieved that he was finally getting to see John.  It's the hanging around wondering what you should do or what options you have that frustrate the life out of you.

John has finally got the new NCARD website up and running and here is the website address

I have been through it and it is informative, it has information on up and coming trials etc.  I hate that word trials because someone doesn't get any treatment, why can't they say to people would you like to do chemo or do nothing instead of giving someone nothing.  I know quite a few who have opted for not having any treatment so why can't they use the ones who want nothing as a comparison to those who try the drugs?  Surely there must be a different way of testing out new drugs, I bet this is why many never get any further because people aren't going to volunteer if there is a risk they get nothing. 

Anyway chemo is out of the question for me, I think Andy Hughes once said that I was more at risk for another dose of chemo than I was from the meso.  Yet its 2 years since chemo, not that I would like to experience it again but if push comes to shove I would offer my veins again to the chemo nurse ... but only if it was the last thing to try.

Okay going to have a massage and lift my spirits a bit, then hopefully look to seeing if I can get us both away for a long weekend somewhere that is warmer but withn 2 hours of flying time. 

I will keep you informed of what the outcome is regarding my scan, at least I know I have a set of Doctors who want the best for me and care about what is going on inside.

Don't forget to check out the website

Friday, 12 February 2010

My Stomach

It was good to know that my heart is as strong as ever and my ecg was clear so my doc has decided to send me for the camera down the throat job.  Never until I had endo was I ever ill from that to meso seems so unfair. 

I am already panicking at the thought of having to swallow something alien but the hope will be they find whatever it is that is making my stomach feel crap on a morning and this new pain around my heart area.  It must be heartburn or an ulcer which could have formed after the chemo.  Lets face it my insides use to open up like a boiled tomato two days after the chemo and something must have to suffer.  I know its been a few years since the chemo but this problem has never gone away so fingers crossed it is something that a couple of tablets can fix once they see what's going on.  The other side of the coin is I hate wasting doctor's time, back to the days when they kept telling me there was nothing wrong and now I have a fear that I would be wasting their time and money.

On a happy note Nat's gave birth to a beautiful little girl on Monday after spending the weekend in labour, but it is her first so she was kind of expecting to be in labour for a good while.  It's a good job that Chris had her hip done before the baby came as Nat's needed a C Section in the end so I know Chris would have postponed her operation so she could have helped Nat's, not that a one legged cripple could have done much but I am pleased it happened the way it did.  Poor Nat's partner has two patients at home and a new baby to look after.

Speaking of cripples hubby's knee has blown up like a balloon and he is finding it hard to bend it and has been referred for a knee operation.  He had one done in 1996, and to show my sympathy I made him go to the metro the next day as it was valentine's day, so I could get my engagement ring.  Cruel wasn't I, this time though I will be looking after him once he has surgery, hopefully I will get my own back and be giving him orders on what to do and what he can't do, he never listened in 96 - hence the journey to the metro.

Guess I had better go and get ready for work, have had a busy one this week and managed to go into the office everyday, although I haven't got much accountancy work done I've been busy writing a database to make life easier for another member of staff, only problem is that it knocks me back on my side and causes me lots of stress.  I have had no proper teaching on writing them and learn as I go, so sometimes what would take a programmer 5 minutes to put a line together in VBA it takes me 30 minutes on some of the code. 

Looking forward to a relaxing this weekend, hope everyone else has a good one.

Sunday, 7 February 2010

Under the Weather

It has been a long week between hubby getting the cold again and me feeling under the weather.  I decided to get myself off to the docs as this pain in my heart area was starting to annoy, even worse I ended up lifting my mst back up to 240 as I had ran out of 10's, I did try down to 90 but struggled and had a very painful night.  My ribs ache constantly and can't decide whether this is the feeling coming back into them, especially egged on by my back massages, or something else has decided to grow.  I am back on indigestion medication, which gives me a thick head on a morning, and so far the pain is still there.  But we all expect miracles and expect one tablet to take everything away, I guess if it is acid eroding the muscle one tablet won't fix the problem so will have to suffer a thick head on top of the already annoying headaches. 

I sent an email to Dr J Steele asking if the chemo mix used by Prof Vogl could not be introduced as an alternative for intravenous to Alimta, but to my surprise I haven't heard anything back, okay that was tongue in cheek!  Infact I haven't heard how Dublin went or whether Prof Vogl's discussion was received well from our thoracic genius yet.  I am sure at some point in time something will be released or we hear through the grapevine.

On a good note one of my best friends had her hip replaced on Tuesday, boy was I jealous, when I went to visit on the afternoon she was sat up in bed feeling as fresh as a daisy .. not the picture I expected, anyone who didn't know would have thought she was having an afternoon lazy .. I'm sure she has had her eyelashes dyed or had mascara applied as soon as she woke up!  At least she is home and waiting anxiously for her daughter to give birth to her first grandchild.  Poor kid has been in labourish pains now for 24 hours, guess with the first it takes some time.

I am sorry I have neglected the blog this week, I have heard from a couple of the meso circle who are under treatment and am sorry to say aren't doing that well with the chemo, for those who suffered on it you can understand how terrible they will be feeling for those who escaped the symptoms I am sure you are sending them your best.  I am a great believer in thought creates an energy and this energy can be used to send some for of healing or compassion to those that aren't doing well ... sometimes its good to believe in something.

No pilates on Monday coming so maybe my ribs might start to settle a bit, there is always the hope in the back of my mind that this is what is causing some grief but then my right side doesn't hurt .. then I'm back to the argument that the right side is healthy and so it goes round and round.

I have thought that maybe I did return to work to early after surgery, after all it was just under 3 months but then my brain would have gone stir crazy.  I have always been the same have major surgery and return to work to early and I have never learnt the lesson .  so I will enforce it to you guys, if you go for surgery do not push yourself too hard and expect to be normal in 12 weeks, it doesn't happen. 

I haven't taken a sleeping pill at all this week as I have been sleepy but my nights have been restless and filled with nightmares, maybe to get a good start to the week I may just take one tonight.

Finding the right programme last Sunday was a nightmare and I had meant to come back on the blog and tell you to go onto Iplayer to watch the slot on meso.  To be honest it was the same old story, meso is certain death in the eyes of the PCT and spending money to enhance someone's life for a short period of time isn't really a priority or a good spending move for the trust.  What about all the taxes and National insurance that has been paid in for this very reason.  The politicians seem to try and blind sight us by making us believe the NHS and our pensions are free, well wake up mp's we know that our NI goes towards the NHS and our employers pay 12.8% on every penny we earn towards the NHS and our state pensions, where does all this money go.  Lets face it a footballer is on £100,000 a week that's £12,800 in employers NI without blinking then there's his paye and NI, lets not forget he pays 12% upto £685 then 1% on every £1 after that, so in my reckoning Man United's first team (15 players based on a £100,00) on employers cost alone would bring in £192,000 that's how many chemo treatments?  Sorry jumping on the bandwagon again! 

It is Sunday so probably not a good idea to get worked up, need a brain for work this week.  Just wanted to let you know I'm still here and still moaning!

Bear is moaning in the background, the room is to warm and he has sat out side for an hour, finding stones to chew, but I think he could do with a brush .. wonder how many fingers I will have left by the time I have finished brushing him tonight .. I know hold a treat in front of his nose so he doesn't chew the comb.

Take care all