How do we treat the mind

Yesterday started badly, the boiler had stopped working and when we got up the kitchen smelt of car exhaust fumes.  My first thoughts were of Bear who insists on sleeping downstairs, I hope he didn't have a rotten headache, but he seemed fine.

We discovered we had ran out of fuel, I thought there would be some safety in the fact that the boiler stopped working, but by the smell I have serious concerns.  The Boiler is attached to the outside wall so something is wrong.  We borrowed a 100 litres of fuel and tried to ignite the boiler to no avail.  In the end we had to call an engineer, he arrived at 2 and left at 5, still no boiler working and even worse an expensive bill to pay.  Hopefully we will get an emergency delivery on Monday of 2000 litres and see if it gets the boiler up and running.   Needless to say the house is an ice block, even worse our logs are soaking wet so we can't light the open fires in the office or old lounge!

It hasn't helped Gary's mood either, he has been down this last week and I can feel his pain, he feels like everything is going wrong, and not just with me.  To put the icing on the cake we got a letter from Dr Beddows telling us cyro isn't a cure and I have to many tumours and it is a waste of time treating them.  I don't think she gets the full picture but not being able to explain in plain english what we want I guess she never will.  I know she can't take them all out, but taking the largest and most painful ones out gives palliative care as well as slowing down the growth.  She also stated that the meso is within the chest wall (My 3rd boob) so is untreatable.  How do we ever step forward if they are unwilling to do experimental blasting.

Negativity does nothing for us, both carer and patient alike, it is a stab in the heart.  I have been turning my thoughts to those with cancers that are now out of control and wonder how they get through the day.  The last line of her letter said "she has had it since 2003" (no one gets the time line right) so does that mean I have had enough of life?  I'm only still here because of the actions I have taken to try and kill this damn disease.

I went to buy a new bra the other day, what with losing and regaining weight, my 3rd boob etc, she pushed me into a 32 E, my shape is all wrong.  The 32 is tight on my scars, having always worn at least a 34 for space, but I have been wearing the bra in the wrong position so causing more stretching on the muscles.  Although the bra is conflicting with the scar the 3rd boob isn't pulling as much so which do I stick with?

Today is going to be fun, I am freezing, its windy and having a house built in the 1800's is a lot colder than the new modern well insulated ones of today.  Think I may have to resort to doing housework to get myself hot but then I will end up breathless - such a dilemma we live in.

Decisions have kind of been kind of made in our joint minds, try for the ADAMS trial as its less toxic, but pray I am not a placebo, then if at all possible try for the NGR015 - but I may not be eligible for this if I do the ADAMs trial first.  Its also vice-versa if I do this one first I can't do the ADAMS.  So there we have it another dilemma, but then I can always have another go at chemo.  Just the thought of chemo turns my insides to jelly and makes my knees knock.  I spoke to my oncologist on Friday night and he suggests the NGR015 because you are still getting some kind of treatment.  I know my next scan will be due end of May but I think I am going to hold back, whats the point of hearing more bad news.  Treatment I will aim for starting end of September and make the most of the summer, why be ill if it could be my last summer?

We all know we change our minds from day to day but if I have been slow growing since Sept 09 then another 3 months isn't going to make that much of a difference, considering I didn't get cryo until April 11.  Although I could do with a bit of radiotherapy on a spot in my right back - but I can't see that happening can you.

I hope you are all doing well and of course I wish you all stay in remission and these decisions for the future aren't resting on your shoulders. 

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.

Searching for Answers

We have all lived through 3 monthly cycles now for so long that life is based around them.  2 weeks prior to a scan we both worry, then its the waiting game for the results then the meeting and the discovery of what is going on.  We either come away elated and wonder what we can do for the next 10 weeks before we do it all again, or we come away with a heavy heart and try and kid ourselves we will be ok.

Our 3 monthly cycle started long before the meso was diagnosed, yet once it was things changed.  The first year we seemed to cram so much into our lives, the 2nd year it was always a worry leading upto the X ray and then it was treatment and the promise that we would make the best of the rest of the time we had.  The chemo didn't work and I found surgery.  After surgery we promised we would do everything just in case, but we fell into the All the Time In the World attitude and of course back into the 3 monthly cycles of scans - CT's this time as the X-Rays never picked up the re-occurrence back in 06.

The strain of living like this isn't healthy, I didn't realise until yesterday just how hard it has been on my husband, the 3 month cycle seems to be harder on him than me.  But really what is life?  If I wasn't ill would we do anything different than we have done recently, him watching the cricket and walking the dogs, me going to work?

We haven't done much socially because I work and have no energy left at the end of the day but then everyone we know works so are they suddenly going to stop working during the day to fit me in ... of course not, so what is life?

The trial drug could help slow the process, after all this is how we find heart drugs, ms drugs, someone has to take them with a complaint and hey presto they find it helps with something, not always what it was developed for, so that is how I am going to look at this MEK.  It may make me ill but surely after a few weeks I will know whether I need to stay on it - the worry is if it doesn't work then where do I find HOPE.

It's not having HOPE that sends us down that spiral of not surviving, before I sign that dotted line I am seeing another specialist today.  Maybe he has come across a case like me before and can give me some idea of how long things may take to get really bad.  Why would I want to know this, I have no idea but feel I have to travel this route.  After all things hurt differently now, having upted the MST and not getting much relief things can't be that good.  I know its only a few mm's here and there but those few mm's can cause a lot of grief, then its new stuff especially on the right lung.

I can't remember feeling this hopeless before but then surgery was always an option, I know we all have to die sometime, but as I keep saying I'd much rather it be in bed asleep when I'm around 80, not in agony, grasping for breath in my 50's.  How do these other cancer patients do it when they know it has spread and only have months to live......

Mesothelioma Supermarket

If Meso was the supermarket and my basket - sorry trolley - was my treatments it would go something like this

1 VAT
2 Pluerodesis
1 Decortication

11 doses of Chemo
12 zaps of Radiotherapy

6 Cryo-ablations

But now I am passing the special offers aisle and the big question is do I take the one and only thing on offer

A new trial of MEK - hasn't been released to the public yet, only 4 testers tried with varying problems

Trouble is if I was in the supermarket I wouldn't pick up the trial on offer but real life doesn't work that way and the bottle with my name on won't have a shelf life for very long.
 
I have a further week to think about it before hitting the checkout counter.

We went to see the trial doctor yesterday and she didn't seem to be the charismatic person she was the first time and this kind of put me off signing the dotted line.

Ups and Downs of living with Meso

Yesterday was a cold, windy and stay in the house day, sometimes I feel a prisoner has more life than I do when the weather is against us.  I just couldn't be bothered with anything at all. 

I have had some news back from Dr Abtin and he is surprised at the slow growth rate of my meso, infact I don't think he has ever come across it growing so slow before.  Of course this makes me happy but I still hate the thought that it is still growing and causing problems.  When one part of your body isn't working right other area's suffer and in my case at the moment my eye's are.

As well as my GP, Dr Abtin and Prof Suh are trying to get a hospital on board to learn the technique of cryoablation.  I watched part of the BBC2 Cancer program and saw the cyberknife, the same one that I have details about on my website from 2008.  I am hoping that the Royal Marsden could be persuaded to think about cryo as they seem to look to the future in new and exciting technology.  If you go to the Royal or Harefield please mention cryoablation, the more the word gets out the more open minded someone might be.  As you know I had the fast growing nodes cryoablated last March (11) and they haven't come back, I was lucky that he targeted the ones that had grown the fastest and maybe the shock of being killed slowed the others that were growing.  I need the same to happen to the new ones that have appeared, as they haven't undergone the wrath of cryo, and maybe they too might just stop in their tracks.

Of course he also told me that I have a few growing near the pericardium, which after all the problems and pain I endured before surgery, this didn't put my mind in any comfortable zone.  Before surgery I had meso in the pericardium and believe me it was like having heart attacks on a regular basis.

Trying to get a new technique is not easy, sometimes I wonder how things do hit the market.  I can understand the slowness of drugs but laser, cyberknife etc you see it there and then.

I had a note from Andrea, if you are booking holidays this year please check her prices out, you can find her link under Holidays and Travel down the left hand side.  For every booking she contributes £5 to a meso charity.

The sun is out, the sky is blue but the wind is strong, hopefully by the time I have showered it may have dropped enough of me to leave the prison camp and get some fresh air.  Hope you all are feeling normal.

On a sad note I would like to extend my condolence's to the Peart family for the loss of their son Kevin, although not from mesothelioma he has fought a lung disease for 8 years and needed 2 new lungs, unfortunately at 50 he lost the fight.

Easter Walks

It has been wonderful having 3 whole days with hubby and the dogs.  Although the weather hasn't been the best it still allowed us to all go off in the woods and have a couple of good few hours out in the fresh air.  We even went to Low Barn Bird Life Park and had a wonderful wander around the 50 Hectares there, we didn't take the mutts which I miss doing.

I have lifted my slow release but to be honest I don't think it is doing that much difference to the morning pain, I am certainly feeling more of the cancer now as the iron cage around my ribs is becoming more restrictive, trying to keep focused on it not allowing to spoil my life can be hard work at times but hey we have to give it a try.

Hubby is getting me more and more interested in taking photo's of the birds around us and I am now finding myself constantly straining my eyes looking between branches on trees to see what is up there.  I wish that was the only habit I had as I am so annoyed I picked up the cigs, having such a strong will on doing everything else makes me laughable that something that costs a fortune and is only 4 inches in length can get such a grip on me.  Not to mention all the fruit gums I eat to stop me smoking!

Seems everyone is trying to have a good time over Easter and make the most of things, I heard from a friend in the states and things aren't going well at all.  The US have many more trials going on and seem to be way ahead of the game than we are just wish all Countries could share the information between them to help secure us a future with a chronic illness rather than a fatal cancer.  On the one hand her husband's tumours have reduced (immune therapy was used) but has fluid in the pericardium I wonder how that is be removed.

Its 8 am and not sure what I want to do, I really would love to have a long lie in but my bones get more painful the longer I lie and my stomach more sickly.  Hopefully, for a change, hubby will get a long lie in and give him some much needed down time.

Don't eat too much chocolate

Talking

We think we know what's going on in our partner's mind, after all we have been with them for years and years.  Hubby and I have been through more than enough together and are very close.  Yet when it comes to meso sometimes I hit a brick wall.

Yesterday afternoon the wind settled enough for us to sit out back on the swing and take in the afternoon sun.  I started talking about meso and suggested that maybe we should just go back to LA and get some of the tumours cryoablated.  He went silent and I said "What is it with you - do you want me to die!"  He then decided to tell me that when I was there last March Dr Abtin had nipped a vein inside my lung and that I never remember how ill I am after anything.  That there was a concern that my lung would collapse and we would be stuck in the States.  Why hadn't he told me this before?  It is true, I don't remember how bad I am, I just seem to pick myself up and dust myself down ready for the next round.  I rely on him to be there and pick up the pieces that I don't remember, but he never tells me so how am I to know what his feelings truly are and how worried he is.  He told me that when I had surgery he knew I would fight but when 8 hours had past he was sick with anxiety, then when I had cryo last year and they said he couldn't see me yet he was panic stricken. 

The morning of the cryo he was off handed and I thought it was because he hates being away from home, this is his way of trying to deal with the terror that runs through his blood that something will happen.  Why am I telling you this, we all deal with meso differently, our partners see us suffer but feel helpless, they are watching us go through and put ourselves through terrible and hard procedures.  We are busy putting ourselves through them and not telling them we are terrified of what lies ahead and don't want them to worry so act as if its a walk in the park, whereas they may seem offhanded and uncaring, which isn't the case, they are trying to deal with the feeling of helplessness. 

In the meantime I heard that Lyn is once again stable, such wonderful news that it brought a warm feeling that maybe meso can suddenly stop as well as start. 

I am once again trying to get cryo some recognition through Meso UK.  After all it can treat pallitive without doing longterm damage like radiotherapy - I just need someone to take up the cause.  I also read that a Doc in the States thinks that meso will become a chronic chest complaint - wish that were the case asap.  I know Maves would certainly feel somewhat happier if that was now, he has patients that have been on immunetherapy and still alive.

http://www.mesotheliomanews.com/2012/03/09/optimism-abounds-for-treating-mesothelioma-with-gene-therapy/

The other problem of course, is what we keep doing to our bodies, they can only take so much and counting over the number of procedures and poisons I have taken I am surprised my body is still working.  The one thing I am noticing more and more is being breathless, I was never this before surgery or for a year or so afterwards. 

Enough of me, I hope that today a miracle is discovered, I pray every day for this, but I have so many friends out there now that I pray even harder.

Working from home today as Cold is running through the offices and I don't want to get it.

Please also read the new side piece called Centre For Sufferers is from a lovely lady who offers help for cancer patients.