Count Down

It has been a difficult time for the family, losing mam doesn't feel real and I have noticed the smell of gas in mam's house with no one been there.  So you know how your mind works, has mam being getting a daily dose of a silent killer?  Yet if she was on her oxygen mask would it have penetrated her breathing?  The recorder hasn't registered anything when it is plugged in .. probably me looking for a guilt trip I could do without. 

I never really discussed my cancer with mam, I guess she didn't want to think about burying me and I was sure I would go well before mam.  It has kept the whole family away from talking about next week.  Eldest brother has this idea that my troubles will be over once I get the tumours removed, my other sibling hasn't really said much, he knows this isn't such an easy journey nor will it give me outright remission.  Hubby hasn't said much either, apart from he hates the US and isn't looking forward to a minimum of 14 days out there.

I did get some cheerful news, B & H are out there for a holiday so hopefully we will finally meet and catch up for a coffee or something. 

Thanks to a lady called Julia I received some information on the Adam's Trial which is being headed up by St Bart's.  I have 68 pages to read and digest - had hoped hubby would have read it already but time hasn't been on our side these last two weeks.  I am dreading tomorrow, I have nothing ready for going away apart from buying a jar of coffee and some coffee mate, my prescriptions and of course some elma cream for the needle in my hand.  We are both going to miss the mutts like crazy, the vet is scheduled to call 3 times during the second week to ensure Lexi hasn't any bum problems getting too out of hand.

At least it will be 3 months since my last scan so we will be able to detect how much the thickening has grown over that time.  Hopefully its minimal which means I can hold back the chemo for a while.  I'm really not ready to think about that yet.  I also hope that Dr Abtin can do a little magic and give some pain relief when removing the tumours, it would be nice to wake up on a morning without feeling like I have an iron cage inside my left side, or even when I lay on my back and he gets rid of the feeling of pea's under my skin.

I don't feel nervous about the procedure, having been there before, and this time he isn't going anywhere near my aorta so no need to sign a 'rip my chest open' form.  I have downloaded plenty of fiction on the Kindle .. what a nightmare that was .... so as long as the sun shines at least we can sit out and relax.  If there's no sun this will make the whole experience even worse as I hate travelling these days.  I am becoming my mother's daughter I fear.

If I can get any published literature on cryo and how it is used in the States I am bringing it back in the hope we can get some of our consultants interested in performing it over here.  Freezing bulk must be better than radiating, we are freezing more and more cancers maybe in another few years some one will try it in the UK for meso.

I am totally wrecked and although I will be having treatment I am sure I can treat it as a relaxing time, I remember not having much pain due to the procedure and having less pain than when I went out, so on that bright note I will close for tonight.  If we have access to computers in the States I will update on progress, good or otherwise.

Research is worthless unless it is shared.

Jan

Radio Frequency Ablation

How can I forget something that I researched and yet I did.  I received an email yesterday from a gentleman that included info on RFA.

I guess because I have been dealing with Dr Abtin since 2008 it was only natural for me to go back for cryo but for anyone else who have nodules this would be an ideal way of blasting them.  Strange again though how none of the medical profession have mentioned this.

For updated information please visit their website

http://www.rfablation.co.uk/patients.php

I am pleased to see Prof Lee's is still involved.

I would also add that previously anything over 2 cm were untreatable, this has now changed to upto 5cm.  You all know that I believe in debulking, and by treating any cancer nodules, not only are you debulking but giving some pain relief at the same time.

Who knows, my next visit on regrowth may be back to RFA if they will have me.

For my own health at the moment, I don't know whether it could be classed as a natural thing, but occasionally I dream that I am vomiting badly and I wake up with a very dry mouth.  Part of me believes this is my body trying to dispose of the cancer, as I had many of these dreams before I had surgery.  My first recurrence of this dream  was about 3 months ago, and then I have had two or three, the last one a couple of nights ago.  I am sure though that this would be explained away by saying my mouth is open during the night!

Keep safe and keep fighting. 

Testing times

It is nearly a week since mam died and I have no idea where the time has gone.  I keep thinking I have ages to go before my trip across the pond so have put all thoughts of organisation to the back of my mind, but then this evening I realised its a week on Saturday when we fly.

I am starting to get nervous, John Edwards isn't sure how Fereidoun will get in to cryo, I can only hope the probes will go and knock down the tumours like skittles in a bowling alley.  Paul Taylor from Manchester rang to say that his department think I have a very slow growing meso at the moment, but also pointed out that I have a nodule on the right lung, unchanged, but nevertheless one there.  I have noticed this previously and believe him when he says it hasn't changed in shape or size.  It's bad enough having it in the left without the right joining in!  Itis good to get lots of opinions on the state of ones lungs, some pick up things others haven't. 

The only problem is the mesothelioma itself, hopefully it remains slow but then it can change, or it can stop.  In the states they go straight in and use chemo to try and keep it back, do we hold back in England just in case it doesn't speed up, or hold back because there is no other chemo's out there?

Why is life full of decisions, I can understand why some patients want to be treatment led but I can also understand why some, like me, want to make their own decisions.  If it was a water infection then I would be treatment led because water infections all seem to work the same, meso doesn't seem to follow the same pattern in everyone until it takes control and even then it can be different in each case.

The pain in my heart is still there and feeling heavier, I am hoping this is the one that will really get blasted and go, maybe then I will relax a little.  I have noticed recently how my hip bones are becoming more pronounced and my left one gives me strange sensations if I catch it by accident.  I need some weight on this area badly.

British Lung Foundation have been campaigning recently about COPD, my mam had this.  I remember some 20 years ago being at hospital with her when the Doc was reviewing her xray and he said she had calcium lumps in her lung.  I have wondered since her death on Friday whether to ask the crononer to investigate, who knows she may too have had mesothelioma, yet the thought of postponing her funeral isn't in me.  As one of my brother's said, what would be the point, there is nothing that could be done if she did have meso.  What is COPD?  most elderly people seem to suffer from this once they get to 60 suddenly they have COPD and it was classed as normal for people of that age, but why - it's not a normal condition, we aren't born with it so why does it happen?

With mam dying I must admit I haven't had time to put my own fears in place, I guess once I am on the plane then I will start to panic about the days ahead.

Keep the spirits high

Life's limits

Here I am coming to terms with recurrence of this dreadful cancer, I have managed to dust down my armour and get the battling spirit to 100%.  All plans set for the next month ahead and then out of now where my mam dies yesterday. 

Watching her in A&E struggling for breath was a nail so deep in the heart it brought home what we all may suffer in time to come.  The thought of losing our mam was bad enough as we sat by her knowing that she wasn't going to pull through, her body doing what it had to do to keep alive, trying to drag in breath to keep her heart pumping. 

We don't know whether she knew who we were or not, she had collapsed getting onto the mini bus from her day centre.  The paramedics had worked to get her a heart going for some 20 minutes and we were told on arrival that she still wasn't breathing on her own.  We sat for a good 30 minutes before we could see her and by then a miracle had happened, mam was actually breathing but was unconscious and if she did awake she could have suffered terrible brain damage.  In that desperate hope you have we were willing her to come through but also knew there was very little hope if any.  God bless her, she tried to come back and considering her heart was bad battled all night till 9.30 the next morning. 

I felt for my husband because this is what he will have to deal with if the meso gets it's way.  I also know that watching mam affected my brothers badly also.  I hope that should I get to the point of struggling for air that badly then my nose and mouth accidentally gets covered over.

It has made me question why do we live.  What are we accomplishing in life, as I step into another battle ground with meso I have to ask myself why.  But I love life, I may not do what I should be doing, I do moan about pain but the joy of stroking Lexi and Bear, being hugged by my hubby, feeling the sun on my face, these simple things give me so much pleasure.  Why do we have to complicate our lives, we bring in stress, guilt, the need for better things .. yet once we die our possessions are gone, what caused stress is no longer an issue.

Death is a natural part of life yet it affects us so badly, no matter what age.  My mam was 84 and had a good innings, I wouldn't say she had a great life, she wasn't easy to please but she choose her life. It was always a given that mam would outlive me - which I must admit was a worry as I had visions of my brothers putting her in a home if I wasn't around.  I would like to die of a heart attack, during the night without even knowing - I believe that's how everyone wants to go but its a shame that not many of us do. 

I wonder if over the next 100 years we can develop our genes to a state where we could go to bed one night when we are 70 plus and say tonight please.  Yet if you are healthy and are active, you may not be ready till you are 100, in other cases it may be you are ill and wish to go before hand.  No dying in agony just off to sleep and know no more.  I think I've said this before, are we ever ready to throw in the towel and give up.  I don't think I can ever see me doing that.

Bear is doing his barking of 'come play with me' its a lone woof every few minutes, so guess I will have to close, before I do last night we put crufts on just to see if he would watch the dogs.  He sat in front of the TV and watched the working dogs parade around the ring with full interest .. I totally believe they enjoy TV, but only when its another animal on 4 legs.  The woofs are every minute now so better go and have a play fight.

Hope for Some

Remember when we went on our chemo's, we always had a kidney test to ensure that we could cope with the toxins produced and our kidneys wouldn't fail - it's one of those things we don't think about again.  I remember when I went back on Alimta the 2nd time and had to spend a day up at Newcastle having them checked again and it was only then that I remembered the first time.

Why am I mentioning this, one of my meso friends has had kidney failure - was it the chemo or was it the contrast - he isn't sure but he has been out to Germany and like Alimta, the chemo's in Germany work for some and not for others and affect each person in different ways.  Maybe Prof V should look to see how toxic his chemo's used are and decide whether his patients should undergo the kidney test beforehand, just to rule out any possibility of the kidney's being unable to deal with the chemo working it through the system. 

No treatment against mesothelioma is 100% safe but hopefully there are some safety nets in place for all treatments.  It's back to seeing which treatment can accomplish what.  I know that cryo-ablation will not remove thickening or reduce it, but it can take out individual massess and take away pain where the mass is pushing on nerves.  I will ask why the probes can't be inserted in to thick mass when I am there.

We know that chemo can reduce individual massess and the thickening, but with a lot of side effects.  If we were dealing with a normal cancer then removing that mass and we would stand a better chance of being cancer free, but we have thickening, which is hundreds - neigh millions of cancer cells all stuck together creating a beans on toast affect around our lung. 

Surgery and take it all away but eventually it does return.

If you are ever in doubt about starting any treatments, research and research again. Visit as many forums as possible, read personal blogs where the writer has experienced first hand the downfalls they went through.  I know several people who have had no problems with side effects from Chemo, and I know several who have suffered as bad as me and a few that have suffered much worse. 

Trials can also leave you in a worse state than you started out, if it did manage to kill the meso then it is worth the suffering but if you had no positive results, your quality of life can be ruined.

One thing I do know, if your kidney's fail due to one chemo you are unable to ever try a different one and that rules out the only main treatment we have.

I had made my mind up to have chemo as soon as I come back from the States but I have been thinking and if my thickening seems stable I may withhold for a couple of months - sometimes meso can just stop for no reason.  As long as I get these massess taken away, as much do to do with new pain as well as debulking, then take a few months out to get a little stronger before the grueling 5 months ahead.  My luck the thickening will be twice the size again and I won't have the luxury to decide.

Keep fighting and good luck to everyone

Dates for Cryo-ablation

My date has arrived and flights are booked, 4 weeks and counting.  I am a little nervous, aren't we all when we are having something done.  I will need another full scan out there before he starts but at least he will know for sure what he can reach and what he can't. 

If cryo-ablation is something you are considering but aren't sure whether it will help if you contact me on jan@jansjourney.co.uk  I don't mind taking your scans for Dr Abtin to review.

My GP rang the other night to see what was happening, I told him that I was advised to go on chemo by everyone, including Dr Abtin.  I also said that going to the USA probably wasn't going to be viewed as a good thing but as a good doc he reminded me that its my body and my life.  I guess he will be busy over the next few weeks trying to  find out what Chemo I can have etc.  I am still waiting for Andy Hughes to see me but I haven't heard anything yet.  

Hubby really doesn't want me on chemo again, he hated watching me go through suffering the first time so when I told Dr Jose (GP) that chemo was next on the list after cryo hubby's face dropped a mile.  I am hoping that this time it will be different, but not sure about my yak stomach.  If it use to go like a boiled tomato then what will it be like now considering it feels awful every morning as it is.  Maybe another Chemo won't be as bad as Alimta and Carbo mixed.

Others get good results with the Chemo, Chris S and Colin have done well so maybe I will do well this time.  Can only keep my fingers crossed and hope my time isn't up!

With that Cheery note, and another quick one, Debbie and Cliff have both back to stable so Well Done, it always makes you feel good when others are doing well.

Jan