Prof Fennell at Leicester Hospital

It was wonderful meeting up with Liz again after such a long period of not seeing her.  I had meant to take a snap shot and post it on the blog but I have a memory like a sieve.  The drive down to Leicester took just under 3 hours and we made excellent time allowing us a good 40 minutes with Liz before we met the Professor.

Professor Fennell has a passion for Mesothelioma and wants to help us find a cure and stop the needless dying from this terrible cancer.  I also didn't realise that Mesothelioma UK was born out of Leicester Hospital so that came as a shock to me also.

I came away from the consultation more confused but more positive for the future, there are several trials going on for meso which I may or may not qualify for, but the most important thing I found out yesterday that if I jump on any trial now it can exclude me from a trial that is directed for meso later, not what I was told beforehand.  I must admit I was lost off and pleased that hubby has a better memory than I, but also the fact that Liz will kindly send me the current information of what is on where so that I can apply.

We discussed again the ADAMs trial, which on all accounts is having good results, the only problem is that 2 out of 3 actually get the drug, so if I were to try that one its better doing it now than later, just in case I had the placebo to start with.

Then there is an immune therapy and chemo trial going, on this you still get chemo and a 50/50 chance you get the stimulant as well. 

It seems they still put an average of 4 - 6 months on remission after taking chemo so in the light of finding that out yesterday it seems I and everyone I know who has taken Alimta has done better than expected and we far exceeded the standard.  He did mention me having another go with Alimta and I saw hubby's face hit the floor.  He is really scared that I take that route, to me I know that my insides seriously suffered and that the toxicity level for my body was too high but I am willing to give something a go if I can buy that extra time. Although if I did do alimta I would prefer to be hooked up to a fluid drip with painkillers mixed in.   Therein lies another problem, when do we put ourselves through the chemo, 4 to 5 months of our lives could be (or in my case) ruined with the side effects.

It made me wonder, whilst travelling back yesterday, how do people cope when they know it has spread to other areas, or those with bone cancer, how do they a) deal with the pain and b) deal with the thought that their life will soon be over.  I feel guilty about not making more out of what I do, but then what else more do we do with our lives than spend it with the ones we love.

I hope that Prof Fennell gets Leicester Hospital on the map for a No 1 Centre for Mesothelioma, with several trials running, each with good results (a mini USA all rolled up in one hospital) -  although it would be nice if it was Bobby Robson up in Newcastle for the simple reason it is closer to home.

One thing I know for certain is that Liz is still passionate about helping those with Mesothelioma and will drive mountains apart to ensure we get the help/compassion/assistance and more importantly the straight answers that many of us want. 

It is true that many do not want to hear that things aren't doing well and would prefer to hear stable rather than change, even if there is change - if my hubby had had meso he wouldn't want to know, whereas I need to know. 

I am sure I will hear from Liz shortly and I will then pass on what options are currently available and where.

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

Ring in the Year

I just had a peep at what I wrote last New Year and believe it or not I haven't done anything that I said I would try and do.  I do keep procrastinating I have come to think this is normal for everyone not just me. 

Examples:
 I had an email over Christmas from an old colleague who had prostrate cancer last year and I promised to visit, he is now back abroad working! 
Going to more meso meetings - haven't managed one this year
Doing more with friends - hum
Working Less - kind of achieved

But seriously we all treat life the same, we make demands on ourselves that we just don't keep, we promise ourselves we will find time, but time doesn't slow down infact I am finding it goes faster.  I use to be able to accomplish all sorts of things during the day, these days it takes me 90 minutes to pull round on a morning, if I had to rush I don't know what I would do.  I guess age also comes into it but I am only 50 and should be a lot fitter than that.

I am so lucky to still be alive and I do count my blessings about that but sometimes I don't act like it.  I hate pain and I hate mornings when I wake up and feel crap-my mam says she feels like that everyday but she's 84.  After having her stay for a couple of days it frightened me, am I as negative as she is.  It was hard work with her and I hope that I'm not so hard to deal with should my health take a downward turn.

To ease my pains the last couple of nights I have taken temazepam to relax my muscles and  have woke up with less pain which in turns makes me feel much brighter, albeit, I rose much later than usual.  I don't want to go down the route of taking tablets to feel fitter on a morning but they certainly helped me yesterday.

I remember when I use to go through my 3 monthly sessions and I dreaded the thought of coping with them in my elderly years and I use to wonder how people with joint pains carry on day in and day out, but you have no choice.  Life is so precious yet what do we really do with it? 

My cousin never wanted to live over 50, unfortunately she got her wish and died at 49, she said she never wanted to get old, I on the other hand don't want to be old and in agony but I do want to get old.  The thought of not being with hubby and the dogs, watching the snow fall or sitting in the sun reading a good book is unthinkable but I am still not doing enough with my life.

On that note lets hope that 2011 is the year that I actually start to do more and accomplish all those things I never seem to find time for.

Wishing you all a healthy and happy 2011
Jan

Ups and Downs

Like everyone, the weather knocks me back and certainly puts me off going out.  On top of the cold I have been over working and ended up wearing myself out, hence 3 Sundays spent on the sofa feeling sorry for myself.  It scares me when this happens because I feel useless and wonder what I will do when I get to the stage that this is all that life has to offer.  I couldn't even find the energy to turn the computer on, but then you find yourself getting frustrated with yourself for not doing anything.  I do wonder what I would do to keep myself active when things start going downhill, I certainly knew that if I felt like I did on those days I wouldn't have the energy to fight. 

On a brighter note, or not, Lexi came into season and poor Bear has been beside himself these last 4 days because she is ready.  What beautiful pups they would be but alas Lexi is to old and Bear to young.  He has no idea what he should be doing, his idea of romance is licking Lexi's ears constantly or having his nose attached to her rear.  He stands panting next to her and driving us all mad.  I took him into work Monday and Tuesday to give him a break.  Hubby showered Lexi down to get rid of all the salva off her back and ears and hopefully block the aroma she is giving off, but it didn't work.  As soon as he came through the door he was at her ears and licking as if his life depended on it.  She is nearly over the period of come and get me and is back snarling today when he gets within biting distance.  Just hope he starts cooling down as I don't really want to get him done.

Another landmark that happened was my nephew's 18th.  This was something I didn't really think I would reach and I was as proud as punch when we all went out to dinner.  I hope that I get to be around to see him graduate from university.  He was trying to explain a joke about quantrum physics, overcourse it was lost on me, even moreso when he kept laughing to himself when he was telling it. 

Christmas is once again round the corner, I know that many of us don't particularly warm to this time of year, we have lost someone or we have been going through treatment at this time of year, but again it is always the start of new hope in the New Year and it's one in the eye for still being alive. 

I read something the other day about funding for drugs that only buy a period of 6 weeks additional life.  Again this is based on stats and Alimita was only suppose to give an extra 4 months, how many of us had an extra 12 months minimum.  I know I said I shouldn't get into the politics of it all but my blood is boiling again.  No funds because the NHS has to make cut backs, so the top boys in management ensure its treatments that everyday people will loose and they keep these stupid placed people employed where the higher wages go and us everyday people don't have a clue of their existence.  Under the NHS is your nutritionists, Liaison Managers etc.  I remember once even reading that the Trusts employed people to visit kitchens in hospitals to tell them how to serve food ... that's the jobs that should go and use that money to keep the nurses, doctors and treatments going.  When they say they can't afford to do operations, how, the surgeons are already employed, the theatre nurses are paid .. where does the cost come into it?  If no theatre is working do they stop paying the surgeons and nurses?

I haven't been for the flu jab yet, I keep meaning to ring up and get an appointment - So remember go and get yours.  I am also starting to worry that I haven't been given a scan appointment and only hope I get one in January, that will be a 6 month one, but I have a feeling it won't happen.  I have told hubby that if I have recurrence then I will sue the hospital\chest doctor for negligence as he/they are responsible for knocking my scan back.

Hopefully I will come across alot more happier next time on line

Jan