Fighting spirit

The sunshine has helped restore my fighting spirit and out of the shock I have emerged back to how I usually am, determined to get the most out of life.  I am concerned that my stomach yak feeling isn't going to go now, unless some wonderful doc will put a camera down and see what is causing such a dreadful feeling, and the worry of taking chemo on top of this isn't a nice thought, especially if my insides open up like a boiled tomato again.  Hopefully I will find a chemo that suits.

I haven't a date yet for the USA but I am confident that the cryo will get quite a lot of the nodules, hopefully this will bring some relief to the pain that has been getting worse. 

I hope that they don't just get a couple of day's notice otherwise will have to turn it down, you have so many forms to fill in now before entering the USA.  I am also not going through the international service, why pay out more for someone in a department to do the paperwork - and lets face it hospital's do like to buck up the charges.

The week has flown again, although last Tuesday I felt rather under the weather I have kept myself going, I now have a face full of cold sores and look as white as a sheet, will have to get myself in better health for the battle ahead. 

I can understand why we do give up, the pain and the drugs and the awful feelings are so very wearing and the lack of treatments doesn't help either.  Sometimes you do wake up and wonder is this really all worth it but then as I keep writing, once you are up and moving around you do improve -its just a shame we have to sleep.  On that cheery note I think I'll go and get ready for another day.

Jan

Digesting Info

I have read so much over the last couple of days I seriously don't know how anyone keeps up with what is happening in our meso treatment world.  This Gene therapy sounds so good but seems we are in the wrong country for it!

I haven't managed to speak to Dr Abtin yet, I kept missing him yesterday so hopefully today I will manage to talk to him.  Time zones are a nightmare when you want to talk to the otherside of the world aren't they.

I still can't decide whether this pain in my heart area is cancer itself or just my mind making an ache more painful, but I did find the use of some morphine good at getting rid of it, although it took nearly an hour to go.  Had such a bad night Sunday I don't think I slept more than 3 hours, I couldn't get comfortable and my ribs ached more than normal, my scar tingled etc.  So last night I took a pill and woke up feeling much better today.  Might even get something done instead of sitting in front of the computer all day.

The weather here is awful, the snow was quite a shock yesterday but this morning its grey and misty, no snow left but very cold as well.  Even the crows have landed on the front garden to eat the seeds along with my little sparrows and blue tits  and black bird... things must be bad for that to happen.

I have put quite a number of links on the Treatments blog and a little of the write up, Linda should be employed as a meso researcher for all support groups  a few links from W Szymanski who is doing research for his mam.

Thanks again for the links

Jan

No right or wrong way with Mesothelioma

Strange how when faced with the dilemma of what to do before didn't seem as bad as this time around, maybe because I always knew there was surgery in the back ground, but now after having surgery and a break of 2 years that door has certainly closed.  Shame we can't just go back in and cut the blasted stuff away but then, as proven time and time again, mesothelioma just doesn't give up!  Apparently I am one of the longest living up here with this disease, I know a fair few who are still going well around the country and up here, but again this disease doesn't run as statistics say.  Our ages need to be taken into consideration, when it started and what age, etc etc.  A national database would be helpful for us all to query who had what and when.

Yesterday was a fact finding day at Manchester with oncologist Paul Taylor.  I will say what a beautiful cancer lounge they have, very relaxing looking out into gardens.   I nearly had a heart attack when they took me to the lounge I found myself saying I think you have the wrong person, but they only wanted my blood. 

An open and honest person is what I like and that is what I got although current options is what we are looking for and the golden bullet Alimta was the first on the list, followed by two other chemos.  No trials at present in Manchester but that's not to say there aren't any in other places.  We discussed radiotherapy, but that is mainly used for palliative care.  We did ask the question of why can't the tumours be blasted to debulk but the answer always seem to be the same, it's not used on meso patients for that.  To my mind debulking what you have means less cancer spreading so slowing down the growth rate.

Today was my visit with my Chest man, Dr Abbassi.  I found out that I don't have an MDT team which in one way means I can do what I want to some extent, like finding out who is willing to do what and maybe picking my own treatments but the otherside of this is that no one is really monitoring me....nothing new there then.  I am a wild card but still need a good ear and reasoning to help me out.  He did tell me that the radiologist and himself were available to me at any time.

My next port of call will be my old oncologist Dr Hughes, Paul Taylor was going to write to him with his thoughts and any options, as will Dr Abbassi. 

Dr Abtin has come back with a quick reply,  he is having trouble getting the scan to load on their system.  He seems to think he can get a couple of the tumours, which will halt their growth.  One thing I have learnt is that too much radiotherapy now can reduce its effectiveness later, at least cryo isn't in that vein so therefore can be used several times.  Paul Taylor didn't rule out cryo either.

So here I am thinking all those new pains in my back and side, heaviness of heart, more breathless was down to my body coming back to life after surgery .. oh I wish.  I also wish I wasn't as in tune with my body as I am but then in many ways it has kept me alive, I kind of knew it was back because my neck keeps getting a slight stiffness together with my chinaman back in my left armpit, thankfully he hasn't started using his blunt axe yet!  My hair has started coming out more in the shower, and my finger nails have been splitting, all symptoms of my previous meso history.  Have also started getting those rotten headaches back, although at the moment this could be down to over thinking.  I have to remember you can live with meso growing and still have a life, have done it before but I don't seem to be able to find that energy or more importantly that outlook.  Also I am still a person and can have other things wrong apart from cancer.

The pain some of us suffer is unbearable at times but I would still prefer to be alive with pain than dead, it does affect the quality of our life but for me at least after 2 hours on a morning I do start feeling better.  I would like to wake up feeling normal one day!

So my future plans, if Dr Abtin comes back with a yes I can do them for certain then I will be off to LA for a couple of weeks, (that's another thing I hate leaving the dogs! I am certainly becoming a home bod) then maybe start a round of chemo, but which chemo?  I am hoping Alan gets good results on his vinorelbine.  I also understand this comes in capsules - get in no needles.  Dr Abtin also wants me to meet with a specialist at UCLA.  Just wish I could have cryo in England but Dr Abtin carry it out.

Meanwhile hubby has been looking into some radiotherapy but that doesn't seem to be leading anywhere at present.   There is also the cyberknife, but still haven't heard of anyone who has tried it, not that I mind being the first but sometimes it's best to stick to what you know.

On that note I will close this entry, once I have spoken to Dr Abtin on Monday I will know for sure my first step.  I know that Andy and John probably won't agree but if this does work maybe it will show that it can help others who are in this same position.  We know there isn't a cure, but if some of the tumours are removed hopefully some of the new pain will cease (like it did on my kidney 3 years ago), also debulking the sticky out tumours just leaves the thickening for the chemo to shrink.  Just a layman's view on things.

Keep strong meso warriors, we are all battling together and hopefully all trying different ways to help others.

Jan

Mesothelioma Thoughts

My CT Scan has gone astray en-route to UCLA, somehow it has managed to get lost in Belgium - don't even ask.  All I seem to have done over the last couple of years is complain about the pain instead of trying to take a leaf out of Steve and Linda's book -do something positive!  My positive is whether I managed to get to work all week and looking forward to waking up one morning feeling normal.  Guess that dream will never happen. 

I remember the first year I was diagnosed and after going through surgery, radiotherapy and chemo we spent weeks travelling, I think it was nearly one week in eight on holiday.  Then you settle into thinking you have forever then it comes back.  Another round of chemo that didn't work, a couple of cryo's that killed those particular growths then surgery.  Surgery, in my mind, would hold back the disease for years and years.  I had been put off early on from surgery because many died before leaving the hospital, others seem to have return within 18 months and invariably it always went to the abdomen.  But I thought I had beaten it, that I like several others would have years ahead.  It could be slow growing, it could take years to get to where it was back in 04 or even 07 but then again it could take a very short time.  Maybe if tomotherapy had been available all the small microscope cells would have died at that time and I would still be living cancer free.   But my hubby's favourite saying is "it's done you can't do anything about it", so guess I can't.  What would I do if I could turn back the clock?  I guess I couldn't change when I got meso as how would I know when it occurred, which Sunday shouldn't I have washed my dad's overall's or indeed my brothers overalls? 

What I need to do now is do Something Positive - I am sure that fighting spirit will emerge, but oh how you get tired of fighting, but we aren't just fighting the disease we are also fighting politics which takes a lot of energy that we just don't have the energy for.  I would like some one to wrap me up in a soft blanket and tell me this is what we are going to do and you will be better.   A Pipe dream I know, how do other people deal with cancer, am I just lost at the moment?  - Indeed how did I deal with it for all those years. 

I have pulled an image off of where a couple of growths are - how can these little nodules do so much damage.

These are two starting, further down are another four and then this is followed by thickening. This is why I hope that Dr Abtin can cryo-ablate these two and the others further down.  Or maybe this new fancy machine in Manchester can blast them so they can't release anymore cells.  I remember once being told that 1 cm can hold 1 billion cancer cells, they open and spill out allowing another 1cm to grow etc and etc.  Lets hope that one day someone can find something that stops that 1 billion cells flourishing.  In the meantime, is it the cancer that kills or is it back to the toxins.  This has always been my question from way back when, we can live without the lung why can't we work at killing the poisonous toxins that are spilled out into our blood streams and damage our organs? 

On that note I will close this blog for the night and think about Something Positive to Do tomorrow.

God Bless you all and keeping fighting, don't become complacent like I did, always work on the thought that tomorrow may never happen, this doesn't mean go and be reckless, but say what you mean and mean what you say, treat others how you wanted to be treated yourself.  Smile and the world smiles with you and if you can spare a penny, give it away.

New Info

I am so overwhelmed by an email I have received today with lots of info on gene medicine and a new trial for a drug to be taken after surgery.  Once I have digested it all I will post the info on the treatments blog but I would like to thank the person responsible for sending me it all.

I have now been able to access my scan and the nice crisp darkness of my small left lung has 4 nice sized growths and a little further down quite a bit of thickening.  My friendly surgeon and straight to the point friend emailed me his thoughts on the matter as did John E, both rule surgery out and maybe cryo will not be able to get to it.  I am still awaiting to hear from Dr Abtin so will keep you informed.

Going to go and crash on the sofa after a long day at work.

Thanks to you all for the wonderful support given.

Jan

Holding my breath

It's been a week and although highly disappointed I knew I was on borrowed time, but like all of us, we don't believe it to be.

I have had some wonderful support from the meso gang and I thank you all for that.  I guess I have had so many treatments over the last 6 years I had hoped it would be longer.  Yet Debbie hasn't had as long a break as I have so I should be thankful that at least I had a good run of remission, albeit in pain.

I have sent my Scan off to USA and to James Cook, although I was given the wrong password, so I haven't opened it and had a look.  I doubt I will be able to read it as well as I use to be able to due to the surgery, so on this occasion it will be totally in the hands of the professionals to tell me what they think.

In part of my mind maybe I should hold back for 3 months to see how fast it is growing, but then I have never held back once it was on the move.  Only problem is that options are really limited.  I can't take Alimta and to be honest nor would I wish to take it again.  There is another chemo on the market so maybe that is for use a little later.  I have been calmer than I expected, but flat as well.  It's hard to explain your feelings when you get such an awakening, yet I have chastised myself as I have had different pains and some aches under the left arm .. one of my scars has been really sore hence I put everything down to my body still repairing the trauma of surgery.

Oh well, can't cry over spilt milk, it still begs the question should we do surgery in the very early stages, thus ensuring there isn't many micro cells floating around.  Graham is going strong, how much meso was there on surgery?  Cliff is under Prof V and had surgery early on ... wish this cancer ran in text book style instead of willy nilly depending on where and who.

Once I have some info I will let you know where my train of thoughts will lead me.  For those considering surgery please don't be put off, we all have to make choices on treatments and for each treatment there are always negative and positive reactions, if I had done this would that have happened etc... problem is with meso we don't seem to have the time to totally deliberate over what we should or shouldn't do as it grows so erratic.

Another day ahead and another day down, only way is forward maybe with a T junction, Cross Road or roundabout thrown in!

Jan

No mercy Mesothelioma

How often have I ranted at everyone insisting they get scanned every 3 months, how many times do we hear that the meso had started again because we werent' getting checked out every 3 months and had no idea how long it had been sprouting its ugly spurs, so how stupid was I to let my specialist tell me I was having too many scans and really I should only have one every 6 months.  Infact, I wasn't even going to be given on after 6 months if I was waiting for my specialist I would still be waiting.  A couple of weeks ago I said to hubby if I didn't have a date I was going to get back in touch with my old (privately paid) oncologist to see if he could get me one.  Thankfully, my GP rang me on the lead up to Christmas and asked when my next scan was, I told him I hadn't been given one and he was non too pleased so it seems he organised the one I just had himself! 

So my friend has returned, the areas that were suspicious and brought to my attention by Dr Abtin (USA) are now well and truly active...  The fight will have to start again and I have lost round one already.  Multi focal recurrent pleural malignancy\mesothelioma, what a mouthful but there we have it .. back and kicking.

To say that I am shocked would be unbelievable because we all know that our time isn't our own, we know we have a ticking time bomb inside our chests.  Indeed, every new ache we wonder, even if briefly, is it meso, but we blindly don't think it will return.  We are blinkered into believing we will outwit this rotten cancer.  I have worn those blinkers, I have delayed doing a bucket list with my life and making the most of the time I have, I put its return in the far reaches of my mind so that I could carry on living a normal life.  The pain, as you all know, has worn me down, but it is pain, it won't kill me but now I wonder if  the adjustment in area's hasn't just been my body fixing and repairing itself, its probably being my friend rearming and posting little soldiers all around the chest so that it can come back as multi focal.  Why not just one area, why does it have to hit the whole area. 

What have I ever done to mesothelioma .. did I invite it in, have I done something over the last 2 years to stir the bloody disease back to life .. will I be able to build my army to fight back? 

The support of my meso friends will bring me courage to face the next step and I know that I will do whatever I can to get back to a normal life, I'm not ready to do the bucket list.

Jan