Just a Rant

It seems strange, I looked at a photo the other day of my back and side when I came out of the hospital with my tube stuck just under my left breast. Time has passed so fast since that day. The first morning at home I was so pained and couldn't get comfortable and I had no energy. I remember not wanting to have to have a shower and I think I didn't do it till around noon. Then had to sleep as it had taken so much out of me. Yet this morning I was pottering around after my shower, hubby had gone for an early practice at the golf driving range (peace and quiet) and I remembered how I was unable to stand in the shower and wash without help. How leaning against the shower why he dried my feet, never did do between my toes properly! It amazes me how our bodies can get over so much so quick, obviously pain lingers on but the mental strength to get through kicks in.

People on chemo have to do the same, find that inner strength to go through the next dose and here is where I come to my rant.

Why can't our oncologists do chemo embolisation in this country, we have the technology and skill for stents to the heart so why can't we do this procedure with the chemo here. It would surely cost less than the way it is dealt with now, as the after effects are much less, hence costing the NHS less on drugs to get us through the next 6 months.

The government just can't balance its books. Shame they aren't ran by the ordinary shop keeper or small business man who makes every penny count. I'm on about COE's as they leave uni and never have to work their way up the ladder, so they don't see how to make money and save it from being wasted. Lets face it the boss at the top of the NHS probably isn't from a struggling background who knows how to watch the pennies. Money probably fell into their pockets and never ran dry.

Rant over I think, I just get so worked up that money is wasted yet where mesothelioma is concerned, and lots of other cancers, we have no money for treatments and research. We also have to deal with ego's in the NHS, if it doesn't mean acknowledgement for most of them they aren't interested or down play results.

Oh forgot finally have my appointment for the CT Scan, next Friday. Hubby is already in the worrying mood, I can see his mind racing over risks of catching anything before Friday and missing the appointment, then the worry of what the CT will say. He said the other day that I don't look for risks, I told him if you keep expecting them you will always find problems.

Well back to Big Brother to watch a group of people who hope to push themselves forward for God knows what.

Enjoyed my rant need some ideas how to get treatments aboard to come here. If I was diagnosed now for the first time I would go straight to John Edwards and ask for the lining to be removed, then start to think about what next. Sorry seems like I haven't finished for the night but I must go its nearly 10 and I have to have lots of beauty sleep, not that I get lots for all these strange dreams I have recently started having insomnia gone, dreams took over!

Tomorrow I also say goodbye to my fantastic pain management Doctor, Doc Bernie retires so I'm dropping off a decent bottle of single malt as a thank you for all the advice he has given over the last 18 months. I honestly thought I would be dead and gone before he retired, so nice to be wrong in the best possible way.

Keep fighting

Cryoablation

I have just received this email from Dr Abtin and I thought it may interest a few of you out there. Also it shows what a wonderful person Dr Abtin is.

Dear Jan,
Hope you are doing fine. Radiation after surgery is the way to go to decrease the incidence of recurrence.

I am planning to respond to the email from Harefield hospital. I have been short handed in the past few months. We have fewer fellows this year and one of our radiologists have left, so 3 of us have to do the work of 4. Mesothelioma management has really picked up and its finding a major role in management of recurrence following the surgery or chemotherapy. I have been invited to present at the STR ( society of thoracic radiology) 2010 on cryo and its implications. I hope I could come to UK and train few interventionists there, so they could provide additional care for patients when needed.

Meanwhile, I am eagerly waiting for you CT scan. Its like getting a postcard.

I feel awkward knowing that you have gone through so much pain and suffering. But I still feel that the surgery has prolonged your survival and your presence makes it more pleasant for people who know you.

Regards, Fereidoun

I have been away for a few days with my best friends, we ended up back at Carnforth but the lodge we rented this time was terrible. It smelt, had cobwebs and spiders webs everywhere and the carpets had only be hoovered where you walk. We had to clean it before we brought in our cases. The outside veranda had been ripped apart and most of the balusters removed from the railings. I ended up standing on a piece of wood with a rusty nail in it and that was the last straw. We phoned the owner to tell her what was going on, ie maybe she was paying her cleaner for doing nothing etc, but she was so standoffish on the phone and I guess because she had her money she wasn't bothered, what could we do complaining got us know where. So do not rent No 77 Pine Lodge at Carnforth. I have posted it on the Watchdog site so hopefully no other person will have to suffer it.

I tried swimming but found that was extremely painful and I felt like I had pulled my heart apart, but at least had a decent shower in the leisure centre.

Overall I feel a lot better, the rib cage still feels like my ribs are wrapped up a plaster cast and the bones are tender but I'm still breathing and getting around

I had a lovely phone call from one of our friends in Dubai yesterday, it was my birthday, and she never forgets! Her last email she sent some pictures her boyfriend had taken and honestly they should be on the front of Vogue. So here's to you Benet, get them sent to a modelling agency.

My CT Scan should be coming through soon, so hopefully I will make my final decision about drain Sites or the whole lung with Tomopathy. I think I have already decided on the Drain sites and should there be any regrowth in the future I'll go and see Fereidoun and get blasted, unless he's here and could use me as a Demo! But that sounds negative as there will not be any regrowth to worry about.

Its true though, I remember everytime I had to get a CT or Xray on the 3 month check up hubby would be quiet for the week before then lap up only the good bits the oncologist said, whereas in the later days when I knew it was growing he was convinced it wasn't as the oncologist was God and knew better than me. I think he's learnt his lesson now! But I am nervous about this one, what if the microscopic cells have grown, would they be big enough to spot or under the size for the scan to see. What would I do if it has come back so soon! I know I can get further treatment but its not that, its like your running a race but the finish line keeps moving. No matter how you feel there is always that bit in the back of your mind wondering if this friend is back and out for your total destruction.

I am so looking forward to having a painfree existence. I am going to reduce the duloxatine down to 30 tomorrow, half the dose, and see how it feels. If its unbearable then i'll either take 30 morning and night or just go back to 60. The swelling under my left boob has gone right down but just hurts when I touch it, but at least its a move in the right direction

I should count my blessings, and I do, that I am still here to moan about the pain!!

Have nothing new to tell you on new treatments out there or what anyone else is trying out.

Keep positive and keep up the fight.

Response to Mesothelioma Mate's Enquiry

This is a response to one of our meso friends who was enquiring about research and funds, see what you make of it. This has been published with her permission.

Thank you for your email of 26 June to Ann Keen about research into mesothelioma. I have been asked to reply.

As far as funding is concerned, the Government invests substantially in health research. The total budget of the Department of Health’s National Institute for Health Research (NIHR) and of the Medical Research Council is £1.5billion for this year (2008-09) and is set to rise to over £1.7billion by 2010-11. A significant part of that investment, currently over 20 per cent, goes on cancer research.

While the Department does not have precise data on the proportion of cancer research funding which supports basic and applied research specifically concerned with mesothelioma, it can tell you that the UK Cancer Research Network is currently supporting four studies for people with mesothelioma. Details of these studies can be found on the NIHR website www.ukcrn.org.uk by clicking on the ‘NIHR Clinical Research Portfolio’ link on the right-hand side of the screen, then follow the links to ’Search the NIHR CRN Portfolio’. Select ’cancer’ in the topic box then scroll down the page to ‘lung’. In addition, three further studies are in active development.

From analyses done by the National Cancer Research Institute (NCRI), lung cancer research currently receives less funding than research into other common tumour sites. Again, this fact has to be set in context: 40 per cent of total public and charity funded cancer research in this country can be attributed to a particular disease site, with the other 60 per cent being either fundamental research or research relevant to all tumour sites. Some at least of this basicand generic research will have the potential to help in our understanding of lung cancer and its treatment.

The other factors mentioned above, are set out and discussed in the NCRI Lung Cancer Strategic Planning Group’s report Lung Cancer Research in the UK 2006, which was published in October 2006. They include:

· the difficulties of undertaking applied research (that is, research involving patients) in this area;
· the influence which the attitude of doctors and researchers to lung cancer has on their level of interest in research; and
· what the report describes as the lack of ‘research tools’.

These, and a number of other issues, are set out clearly in the report which can be accessed on the NCRI’s website www.ncri.org.uk by following the links to ‘publications’, ‘reports’ then ‘2006’.

The explanation the Department has of the reasons for the relative neglect of lung cancer research is important, not least because it provides a basis for action. The Strategic Planning Group set out a number of proposals in chapter eight of the above report, which the NCRI and their partners have since taken forward. The list included the following proposal specific to mesothelioma:

The Department of Health for England is developing a framework for mesothelioma services, which will also facilitate research. The NCRI Lung Cancer Clinical Studies Group will consider how to increase the number of mesothelioma patients who can be offered clinical trials through the NCRN network, and any tissue banking initiative will include mesothelioma .

As you are aware, the Department’s mesothelioma framework was published on 27 February 2007 . The framework includes a recommendation that all appropriate mesothelioma patients should be offered the option of entering a clinical trial, where one relevant to their clinical condition is open for recruitment. The framework can be accessed on the Department’s website www.dh.gov.uk by typing ‘mesothelioma framework’ in the search box and scrolling down to ‘mesothelioma framework (final)’.

The Mesothelioma Sub Group of the NCRI Lung Cancer Clinical Studies Group is actively developing three new clinical trials for people with mesothelioma - two involving chemotherapy and one involving surgery.

Yours sincerely,

Edward Corbett
Customer Service Centre

Mesothelioma Treatment?

Monday evening was an eyeopener. I don't know whether the Doc I saw was an oncologist or a Radiologist but still he was a decent chap.

Apparently the mesothelioma was a whisper away from other organs and the worry of a microscope cell being left has now become a forward thought in the brain. I guess I shouldn't have put it far back in my subconscious but what else can we do.

We went through the reaction of Radiotherapy on the Drain sites and Tomotherapy right into the full area of the left half of my chest. I didn't realise that the radiation causes so much inflammation. I remember when I had it back in 2004 on the Drain Sites and it hurt like hell, infact the last day I had it I took severdol before I got on the table.

Tomotherapy is a beam that circles around your body, like a CT Scan and it can be programmed to miss certain organs, but its everyday for 6 weeks. It does cause side effects, your insides are still inflamed and obviously there is the tiredness.

They say that radiotherapy on Drain Sites doesn't prove whether it works or not, but considering I had no meso left in 2004 and regrowth in 2006, nothing crept along mine. I am determined to go ahead and get the sites done.

He needs a CT scan, firstly to check the depth and if I go Tomotherapy, to work out the angles etc, but also to make sure there is no new masses. This hit me as its 6 months, yes 6 calender months since the operation. Alot can happen in 6 months, usually that's the length of time we are given after diagnosis.

I was also informed that Tomotherapy will not kill off tumours, it can kill quite a lot but not the whole lot. 1cm holds something like 1 billion cancer cells. I was keeping tomo as a second option should it come back, but he said cryo would be recommended if it had come back.

Newcastle RVI are also looking at RFA for meso, although still in the discussion stage, this will clear out tumours upto 2cm, remember that is what I applied for first in Feb 2008. At least new ideas are now being considered.

Also James Cook has got a Tomopathy machine and will be using it on lung cancer as well. Dr Sugarbaker (USA Doc) recommends that tomopathy is used within 4 weeks after surgery. Sounds cruel to put someone through this major surgery then 6 weeks of further pain with radiation.

On a high note, if there is such a thing for anyone fighting cancer, a friend of mine is hopefully taking the plane to see Dr Abtin. She has small cell lung cancer and they are hoping to cryoablate the tumour. Things got held up as the CT Scan took weeks to get there and then it was pass worded and due to time difference poor Dr Abtin only got the password at 12.00 last night!

I am sure you all wish her luck on getting sorted.

As always, good luck to all of us fighting this.

Radiotherapy

At last on Monday I will hopefully see the Radiologist to discuss having treatment on my 16" scar and on the 3 drain sites! I did want to have IMRT Tomotherapy but on doing a quick research at present I don't think I want to go there.

As a back up I can know have two options, cryoablation or IMRT.

It is true that a Dr in Harefield is requesting information on cryoablation or as in England cryotherapy. Please God let some radiologists that already carry it out on the Liver, Kidney and prostrate look at the info and say "Yes".

As much as I would love to see Dr Abtin and the Team again I would much prefer to have it done in England, no aeroplanes, just jump in the car or on the train. How many more people would try it out first or be recommended for it first. I found an article on youclaim.co.uk about cryoablation and they state that it is being looked at by some Doctors here. Fingers crossed.

Will let you know how I get on tomorrow.

Mesothelioma Pains?

Since dropping the MST I seem to be having more chest pains than before. The worst time is when I get up on a morning, I have come to the conclusion that when I sleep either on my side or back then straighten up the fluid surges against my chest and heart. I was worried this morning because I thought I must have smoked 50 cigs during the night! Not that I have ever smoked 50 cigs but I guess that is what the feeling was like. My heart seemed tighter than usual, so I came downstairs and took my BP and heart.

Considering I was suffering for ages with such low BP I was shocked it came back 135 over 85 and pulse of 103. I am going to watch this carefully over the coming days.

I am still getting dizzy too, nothing to do with the meso (at least I can't imagine that it could be) and that's partly why I need to reduce the amount of drugs I am taking. But this heart pain and chest stuff is putting me off.

I had an email saying one of the Consultants from a hospital is contacting Dr Abtin directly, I do hope so, although I was told it was posted on Macmillan I was unable to find the posting. Can you imagine if a consultant here gets into cryo-ablation it could become something that can be done in the UK, how many pain free days would that give us, let alone how many others it will stop the cancer growing on. Fingers crossed it comes back positive.

Nearly 6 months since the operation, although I still have more recuperation to do I know I am well and truly passed all the major problems, but sometimes I find myself worrying if a little microscopic bit has found a new home on another organ. I know in my heart of hearts it would still take some time to show itself, if it had, but my right shoulder has been aching again. My common sense tells me its because I over compensate and rest more on my right side because pressure on the left is uncomfortable .... but there is always doubt!

I had an aromatherapy massage over my scar tissue yesterday, the lump that the stitching left is collecting grisel and is getting bigger and catches bra straps etc. Joyce decided it was time so she gentle massaged over the area, I was jumping this way and that but I took it. Thankfully she finished off with a relaxing neck and shoulder rub! Personally I don't know how she could rub over the area, I know I did where I can reach to help get the nerve endings going again but yak, the scar is horrible to look at and I wouldn't want to touch it if it wasn't mine!

Hopefully the weekend is going to be nice and I might just get sat out for some R and R, would love to feel the sun wash over me and let me sleep and take in all its warmth. So I have probably jinxed the weekend and it will pour down with rain!

Hope my meso circle have a good weekend and enjoy the (dare I say it) ... SUN

Great Results

On Wednesday gone, the hottest day of the week, Hubby and I went to see Dr Edwards. As usually we arrived early and unfortunately he was running late. We ended up sitting in the waiting area for a couple of hours, I made the most of it and went to sleep!

He is over the moon with my recovery and although I probably won't see him for quite a while I wasn't discharged but can make my own mind up when to see him next.

The one thing I didn't like was instead of looking at my scars he examined them and the lump on my shoulder blade, they were extremely tender and made me jump. The lump still hasn't settled down. I sent him an email on our return thanking him for stopping me pushing up daisy's and this is what he sent back.

Keep on with the daisy planting!


So to all of you out there fighting meso please keep doing the same.

Even my pallitive care Doctor is happy and I have started reducing the morphine. Dropped 50mil a day and looking to drop the dulaxatine next week to see how the nerve damage is doing. The one thing about reducing is you can always go back up, but I am really looking to coming further down with the doseage.

Hopefully the dizzy spells will start to subside instead of getting worse. Although the pain is a bit more noticeable at the moment I am putting this down to the journey. 2 hours in the car going down with the roadworks etc was tiring (hence me sleeping in the waiting room) and my fluid slushing back and forth obviously annoys the ribs.div>

Good news also is that if my lung keeps expanding and pushing the air leak out I may, fingers crossed, get to fly towards end of October. The fluid is being forced by the expanding lung up the way hence pushing the air back out. I don't know what happens to the fluid as since the operation is was high then dropped then up. Guess it stays with me forever.

The xray looked good in comparison to the ones I have seen previously.

Also the Respiratory Nurse rang on Thursday to say that my background team are now in place and she will see me every 8 weeks unless something is wrong. After taking care of finding my own Doctors etc and dealing with the problems of this illness on our own, it is a relief that someone else is taking over and watching my health

On that happy note I am going to relax, although not sunbathe as the sun is covered by clouds that go right across the sky and the sun will not burn through them today! Even my pains can't take the happiness away that I feel right now!

Thinking of you all in the meso circle