Mesothelioma Petition

Before I forget and go ranting on about anything else it is important that you sign up on the following petition if you haven't already done so.

http://petitions.number10.gov.uk/AsbestosTimebomb/

All you need to do is click on the link then it will take you to the document, fill out name etc and email address then send it back. It is important to do this as the petition itself will be going to Dear Gordon Brown. I think the closing date may be end of April so get your fingers moving!

Well I am feeling slightly better but my body isn't, you can't win can you. If the emotional side is 100% the recovery element is about 20% and vice versa. I spoke to my surgeon John Edwards last night and he was telling me that the lady who went through the operation before me is doing extremely well and has no trouble since coming out of hospital. Where she started out badly and has come good, I started out good and ended up doing badly.

I noticed that my feet started to swell up again on Monday so have kept a close eye on them, its 11 weeks today since the operation and I do have to tell myself that I have done extremely well. Not many people would have been back to work by now, even if it is part time, I don't get to watch much day time TV, I did uptil week 7, when I had the blood problem and swollen legs and fluid in my heart but since the water tablets I have improved, plus the extra blood.

Problem is the haemoglobin keeps increasing then dropping. John seems to think this has something to do with the chemo's that I've had as well as the trauma of the operation. Although at present I am finding my kidney on the left side is aching, reminds me of the ache I had before my first cyro-ablation. But I am not going to let my imagine run wild. Have done that a couple of sleepless nights when I've thought I could have a blood clot in my brain hence the headaches, dizzy spells, ears pressurising etc.

I still haven't got over this damn chest infection though and nearly two weeks down on the antibiotics. Phoned the GP's to make an appointment to find my Doc is going on hols for 2 weeks. Have arranged a phone call with him as I need another xray to send down to Sheffield. Hope he rings me back as the only other Doctor I know from the practice has gone to Australia for 9 months to see if they can settle there.

I have also started wanting a drag from a cig, this started a couple of days ago but as soon as I think about it I find something else to do, I'm not craving but just think "I'll have a cup of coffee and a ciggy" Pointless going on smoking tablets as I've cleared the nicotine habit as well as the habit of lighting up. Don't know why I have suddenly started wanting to have a drag. Anyone have any ideas how to stay off them when you have gone cold turkey. I would hate to start again together with the fact that my hubby would probably stop speaking to me and John E would go through the roof and probably throw me out of his clinic.

If any of you reading this blog are still thinking about having the decortication of the lining, then whats stopping you. Not everyone will have to go through the same lengthy procedure I did, done soon enough saves the diaphragm and the pericardium, so to remove just the lining is quite quick and debulks the cancer taking you back into remission. Come on lets get this type of surgery as a normal way of dealing with mesothelioma. The more the surgeons do the better at it they become and if its done weekly instead of monthly or longer then more lives are saved. So I'll say it again, get in touch with Sheffield General if your up North, Leicester and Liverpool for the Midlands, and Guys for the South. Although you can choose to go anywhere. I would still prefer to see the Surgeon who will go for 100% of the disease but if that isn't achievable by surgery you can always go for cyro-ablation later.

I have only written about my experience but I am trying to get a CB to write a piece and link it to this site so you can read a different account of recovery and what his operation has done for him. If any one else out there has gone through the same and has written about it please get in touch with me, as its your personal account it gives more people more feedback on what happened and how good or how bad it actually was.

Once again Lexi and I made the Newspaper, this time it was the Weekly News, and the journalist has written a marvellous piece, she did mention Mick Knighton Research Fund but no address etc for it.

I wonder if we could get a petition going to get cryo-ablation taught to our radiologists in this country, similar to the petition Debbie has going for chemo-emblisation in this country.

It would be uplifting for anyone diagnosed with mesothelioma to have a various list of options to select from being chemo (both ways), surgery, cryo-ablation, info on all new trials and the best palliative. I like cryo because its non evasive and doesn't take long to recover from. Chemo takes months to go through then you have recovery, surgery is what it is, but if surgery is done early enough it's less cutting and less recovery.

Need I say it one more time, this is your life and your responsible for it, its down to you to ask the Oncologists and Doctors who treat you whats out there, as well as doing as much research yourself. Stay pro active in keeping alive, and axe the China Man

Week 9 and a half

Hubby is busy making tea so thought it a wise time just to add a few words to the blog. I'll do anything these days to get out of cooking! I was speaking to another meso acquaintance today and I would love him to write his experience of his operation so that you guys out there have some form of comparison. I know its not the easiest thing in the world to do but it helps.

My mate Lorraine said to me yesterday she'd wished she had me make a video diary, I wish I'd thought of it and done it, at least when I was down I could replay and see how much further I have come on.

Today I was up at 8.00 I had planned to get loads done from home today as I have a couple of year ends to finish (well start and finish if the truth be known) and these are things I can get done at home. Instead I ended up on the phone for a nearly an hour and that hour turned out to be one of the best spent this year so thanks CB for that. He gave me things to watch out for after the operation and I can't believe how far I've come after speaking with him. It also made a nice change me gaining someone else's advice.

Still taking the Iron Tablets, I am hoping that these won't last too much longer now as I am taking antibiotics three times a day too, I told you if I was turned upside down I'd shake. I also sent an email to my surgeon asking if week 10 holds any nasty experiences so far he hasn't come back so I take that as a no and I should fly through next week.

I missed my healing today because I have this chest infection I didn't want the ladies to come round and catch anything, no doubt they will have sent absent healing this afternoon. Whether it works or not there's nothing wrong in hoping it does and accepting it. Again its all apart of positive thinking.

I have done another telephone interview for the Sun health pages, what on your asking, well what do you think, yes that's right Meso, Cryo and Operation. Those words just roll off your tongue. CB agrees that Cryo should be brought to our shores, we have the equipment just need the training. He's in the same situation for the future as I am, once this cancer starts sprouting it will be cryo-ablated straight away, hence keeping any new cancer at bay.

Sorry have just been distracted a friend of the family has been battling breast cancer for 4 years and (without her I would never of thought of RDA) sounds like the cancer has found some new breeding ground. Why does this have to happen.

After my shower I noticed some swelling on the ribs, has anyone out there experienced the same around this time after the operation. If so can you please drop me a line just so that I know I am not alone.

On that note I can smell the yorkshire pudds getting ready to serve, yes he's burnt his fingers on the tray. Have a good night

Axe the china man

Saturday Blues

I can't believe its Saturday already and another week has flown by, must admit I didn't go into work either. I managed to get a cold, hubby isn't happy with me for picking this up and everytime I sniff I get shouted out either to go and blow or cough it up! I think I understand man's flu now.

Our Doc called in while out on is cycling and has decided I need antibotics for this, so Hubby was right and I was wrong.

Its my nieces 18th tonight but we won't be able to go, too many people, I'll probably fall asleep, my back might get caught and I must be sensible. I must admit I don't fancy having a bop but it would have been a nice change to do something other than feel sorry for myself.

My other problem at the moment is that I look so well that those around me think I'm fit and ready to take on the world, in my eyes I look drawn, grey and heading towards 60 instead of 50.

After I called in the office this morning and ended up spending two hours filing away bits of paper, I came home and sat with hubby, he made the mistake of asking how I was, I mean really was. I poured out that I didn't really know if how I felt was normal, I know its only 9 weeks and 2 days but surely I should be more energised than I am. This dizzyness is back, I get back pain for no reason, I'm mentally tired because I'm physically drained, going to bed is a relief yet sometimes torture, how do you round up all those thoughts and feelings. You can't exactly pinpoint the pain because your back is still numb, the main thing is that I am still pleased I went through this. Everyone talks of quality, my quality isn't that good right now, but my quantity, hopefully, is more than 3 nonths, which is more than expected if I'd gone without surgery and quality would have dropped in the final months so I haven't lost anything that way.

I'm doing another interview, this one's for The Sun, they've asked me not to speak to anyother national newspaper until they have published. Maybe I should have asked for some cash which could have then gone onto MKMRF as you know Chris and crew don't get any funding and rely on donations to keep running.

Am I pleased to unload that now I might find my inner strength will come forward, brush me down and kick me back into Action.

Axe the China Man

Rocky Roads

It is hard when you don't have all the answers or your unable to offer any advice that could help someone else. Unfortunately that's life, all we can do at the end of the day is pass on what we know and hopefully that little piece of info can help someone out there. I have managed to work out how to use abit more of the blog and have posted the two sites that you should find extremely helpful. Mick Knighton's site was there for me in 2005 and has come a long way since then, mesothelioma.uk is a relatively new site where professionals are contributing to articles etc. Similar to what I keep saying about a site that holds all.

Maybe we should get the authors of this site to create an invisible database where all us meso sufferers record all our info so someone out there can work through it and see what common elements run through it. IE people aged 60 to 64 on Alimta bought ex amount of time, the removal of lining etc bought ex amount of time. if we all entered our own info then the budget would only have to fund working it out. Just a thought.

I am doing another interview on Monday morning so hopefully cryo-ablation will go nationwide.

I know I was at work quite a bit last week but this week I've hardly done anything, I guess this is what your suppose to expect the good days and the bad, I don't feel poorly just tired and of course I'm still numb but still have spasms! Unless you've been here maybe you'll never understand and maybe there are a few out there that went through this and still have different pains to me. Each to their own. On that note I am going to help hubby make some tea.

I have my heart checked out tomorrow, hope they can find it!

Remember chin up and Axe the China Man.....

Road to Recovery

It's still strange waking up on a morning realising that the crushing pain in your chest is not a sign of getting ill but a sign that your body is getting better from surgery. Yes its only 8 weeks and this week I've been nearly normal in my activities, I drove to work, I spent 3 mornings at work and my rest period had dropped right down. That was until today, I overslept and after a drive out with hubby found that I needed to have a good lie down for what turned out to be 2.5 hours!

Over the last week I have also spoken to a few different people about meso and what treatments are out there. I wish I knew all the answers and be able to point them in the right direction, hence again I think we need a proper monitored Meso only site for doctors and sufferers both to post information on what is out there.

B & H felt concerned that they had helped talk me into going down the operation route and after reading the blog and how I explained my experience they felt guilty, as I said to them, I talked myself into it and took information from everyone I met, and for the record even though I know what I went through was terrible for week 1 to 2 and the worst day of my life was Day 1, I would still go through this.

Maybe I shouldn't be so opinionated by saying if your not physically or mentally fit its not the operation for you, and for that I apologies but I was expressing my opinion only. I spoke with another lady yesterday and it makes me want to cry when you find out that they are in the sticks and information isn't so readily at hand for the Doctors who treat her. I had an email today and I can't believe this couple lost their daughter at 12 yes that's 12 years old to meso, how as parents do they deal with something like that, together with the fact that this blows the dormant factor right out of the window.

I've wrote so many times how lucky I have been, finding out about cryo bought me plenty of time to find out about the operation. The operation should (if all goes well) buy me lots of time to spend with hubby and dogs, but how do you handle talking to someone who won't be able to buy that time because the cancer is far into the interior. How many oncologists say "Its a localised disease and doesn't move outside the lung\chest" to find out 2 months later that the cancer has moved on and your too late for operations (in this country) as the cancer has got into your Kidney, liver or lympnodes, as at the end of the day it will only give you pallative care and surgery isn't always the pallative you would wish for. I remember an oncologist telling me cryo won't work as it was a localised treatment, funny how the same guy told me meso was a localised cancer!

Time is ticking and I can feel that tiredness sneaking overme, ready for a lie down. I had brought some work home with the hope I'd get something done but I haven't looked at the box, think I'll just pop in the office tomorrow, if all are clear of bugs.

As my American Saviour keeps telling me Axe the China Man

Goodnight

Mesothelioma Action Day

Was I pleased to be able to make Friday at Gateshead, Action Days are important as they push forward what is happening with treatments and research on this terrible disease.

I was pleased to meet up with Debbie who was there to discuss mistletoe and chemo embolisation, Dr Rob Allcock who wants to make surgery and other treatments more available to sufferers and of course Chris and Anne. I was truly surprised that I would make it as it was only 6 weeks after surgery but when I set my mind to something there's no stopping me. I was still writing my presentation at 9.00 pm Thursday evening. I had planned to have it all finished by Wednesday but one thing led to another. Then on Thursday I was interviewed by both the BBC and ITV to discuss both cryo-ablation and surgery.

I am still all for cryoablation first but if you do have far to many tumours I honestly think surgery is the next best thing. Chemo usually takes longer to recover from with no guarantee that it will work with you. Saying that you can be turned down for surgery too!

I had to go into Darlington hospital on Friday night and get a couple of units of blood, not to mention get my feet and legs reduced in size I had suddenly developed tree trunks for legs and feet. Then Wednesday I went down to Sheffield to see John and find out exactly what is going on. Seems once again I baffle the experts.

Although when they say heart and failure in the same sentence it does make your ears prick up quite a lot. Seems my right half of the lung is overworking. I have gained 10 lb in excess weight which we are putting down to the fluid, my left lung has air, loads of fluid and a little space left to take in oxgyen for feeding my body.

Although its 8 weeks this Thursday and I am still not fit I would still go through this again, if for no other reason it helps a surgeon understand more complications then it has done something. If the operation hadn't happened I would be pushing up daisies earlier than I would want to, so I haven't lost anything apart from Quality and how much longer would that have lasted? We know its a silent sneaky killer but I guess the last 8 weeks aren't the most pleasant. Anyway enough about death we need to be enjoying the living.

I received an email this morning with another good result for Debbie, so fingers crossed that her treatment will give full remission. It was good to meet the person you read about and put a face and voice to it. Although Debbie had had an extremely long journey upnorth she looked fresh and more importantly fit. Friday's Action Day was an extremely busy event, and it was nice to see some faces from last year, especially Mrs Eggerton, we sat by her the year before. I do apologise if I didn't recognise anyone but my eyesight has deteriorated alot, I am hoping it will come back a bit so haven't been to the opticians, infact everyday it has changed.

My HB is still down in the 10's, why I have to be losing blood somewhere is a question within it self but Doc has advised 3 iron tablets a day, I have only being taking 1 a day for the last week along with water tablets. Unfortunately the water tablets keep me up most of the night going backwards and forwards, I know I'm complaining again but hey its my thought process going on here!

I am going to try and get some work done for a change so will leave it here for now, take care everyone and remember keep your chin up.