Sunday, 31 May 2009

Mesothelioma and life

Here we are again, another week has past and I wonder where the time has gone. I have just past the 19 week mark and sometimes I marvel at how far I have come since the operation. Sometimes I think I should be back to normal by now but occasionally I remember what I went through, the concerns I had when I could hardly walk from the lounge to the loo, yet that was week 2 to 4.

You may think me an odd ball and in somethings I am, I started going for spiritual healing last year and once I was well enough after the operation a couple of the healers came out to the house to give me healing. All in all it lasts about 10 minutes and whether it works or not I often think that maybe I am this far ahead because I received this. (Don't get the straight jacket out yet!) Yesterday I went to a one day seminar and we were talking about healing and clairvoyance etc then we sat and had a private reading, the person who sat with me knew nothing about me yet told me I had four family members standing at the back of me, protecting me, and two of the family had expected me to die in January, although they were sad I hadn't crossed over (spiritual term for dying) they were pleased I was still alive. Now tell me that isn't proof of life on the other side, or that the healing hasn't helped in anyway.

No I'm not about to lecture you on religion etc, I thought you may like to know, after all we have nothing to lose by trying it, the healing not the private sittings.

I have also noticed my taste buds have changed, I was always a roast beef, yorkshire pudding and gravy person, but since the operation I have totally gone off this type of food, obviously I am giving hubby a hard time because he doesn't know what to cook anymore. I have started wanting more spicy foods. And my worst nightmare happened, I have gone off the sun! I know I can't believe it. I sat out this morning reading the Sunday Times and the heat was getting too much. Hubby got me out a sunbed and after 1 hour I couldn't bear the sun. I had to come inside. I have always been a sun worshipper and would sit for 8 hours, if possible, on holiday. We even had an invite for a BBQ but I know their garden is such a suntrap I decided not to go. So not only did I hide away from the lovely sunshine we always pine for, I turned down the best BBQ'er I've known.

I still have energy limits, and I am finding it hard to sleep deep. I seem to wake up every hour, the week before I had insomnia for 2 nights, so I am getting extremely worn down. I don't know whether its because I have up'ed the nerve damage tablet or I am being took over by the different bloods I have received. Maybe an alien got into the donated blood and is altering my genes!

On a serious note I seem to have a couple of really good days then I have no energy and want to lie on the sofa all day. I wonder if I'll get back to what I was, even when the cancer was growing I still worked full time, now I'm lucky if I put in 5 mornings!

I seem to be going backwards these last two weeks as I was back to 6 mornings not too long ago.

Still waiting to find out what's going to happen about my scar, drain sites and radiation in the lung cavity. Did anyone who had an EPP have fluid problems in the cavity and how long did it stay?

I met a vibrant lady the other day, she has non small lung cancer and you wouldn't think it if you met her. I passed on as much info on specialists as possible, as they seem to be treating this cancer the same as mesothelioma where medicine is concerned. I pray something good will happen for her.

I worried my self sick the other night as my stomach swelled up and felt full of fluid, imagination flying high, but I think it is one of the case scenario's that I will always worry about. When surgery was mentioned in 2004 I said no for the simple fact that the chest was open for the cancer to spread easier to other organs, little did I know back then that I would near enough have an EPP in 2009, and that worry has become real, especially after reading on one of the web sites about someone who had the operation last year and now has it back in the stomach. I know that the techniques have moved on and the likelihood of that happening isn't that high but you can't control the brain working overtime.

Guess I had better find something in the fridge worth eating, hope you have a good week and enjoy this glorious weather.

Monday, 25 May 2009

Meso Drain Sites

I can't believe it, another sufferer has got tumours coming out of his drain sites. I had mine zapped in 2004 and I know of another who also got zapped, neither of us (fingers crossed) have had anything happen there.

Why have the oncologists deemed it doesn't work, how are we going to address this situation. Everytime I read a new entry on any meso sites, 8 out of 10 mention the drain sites. Yet they say they have no evidence to show that radiotherapy works in stopping this happening. Surely if they did all patients with it and recorded how many ended up with tumours through the site then we would know for sure. They probably selected about 10 patients who were well on the way to taking their last breath and they zapped them. If you are at a late stage it won't help but if you don't have a full lining of meso then they should do the drain sites.

I am also worried in case my meso spreads to my stomach. My meso mate CB sent me an email telling me about another meso mate having the operation and a year later it has spread to his Peritoneum. I wonder how many this has happened to, I know of 2 in the North East but I guess I don't know how many operations have been done. I'm guessing around 60 throughout the Country but I am probably wrong.

On a brighter note we spent yesterday in the garden pricking out loads of plants. I can't believe I lasted nearly 8 hours outside without a nap, that is progress.

After Downing Street I was wrecked from Thursday to Saturday, infact I couldn't believe I didn't fall asleep on the train but my Adrenalin was racing. But after spending so long outside yesterday and getting up early today I am aching. My ribs seem to have swelled up again.

We decided to try Northumberland County Show today, we got to 4 miles from the site in 40 minutes and spent an hour travelling the last 4 miles. Its a shame this whole show is only on for 1 day, maybe if they did it like the Yorkshire Show for 3 days or even 2 then maybe the traffic wouldn't have been as bad. It's on single long winding roads and the car park organisation can't of been that good as it was the parking that caused the ques. The disabled parking was in a field with ruts, thank god I didn't need a wheel chair otherwise we would have been stuck. I felt sorry for anyone disabled with walking sticks etc as I believe it would have been dangerous for them. Plus it was still quite a walk to the entrance gate, let alone walking around the area. Unfortunately, due to all the sun yesterday, hubby got a rotten headache (that and being stuck in the car), my legs didn't want to work so we made a right pair. We only stayed 2 hours and missed quite a bit but hubby went pale. Thankfully it took 57 minutes to drive home!

Yes you could say I am recovering well. I did tell John Edwards I would go through the surgery again (I must be crazy) but without it and the cryo before I would be grasping for my breath if I was still alive.

I still live on a mass of tablets but at least over time these will reduce, my scar is starting to fade slightly, apart from the lump over my shoulder blade. I do wish the fluid and air would go as we have had several texts from friends asking when we are going out to Dubai to see them, then we had to miss Barbados. I do hope the weather stays good for the summer, but it isn't the same staying in the back garden, you still find yourself cleaning and cooking.

I hope you have had an enjoyable bank holiday and are ready for what ever tomorrow brings.

Axe the china man

Friday, 22 May 2009

Pictures at No 10

Chris Knighton, Paula Walker, Liz Darlison and yours truely

Chris was impressed with the gloss on the door.

John Edwards and I giving the teeth a showing.

I hate having my picture taken but I couldn't resist having it took on such a prestigious day

Mesothelioma Petition - Downing Street

I was honoured to be asked to help hand over the petition collected for NCARD on 20th May at Downing Street.

The Whole day was an experience. I met Chris Knighton on the train and although I have met her several times over the last 4 years I have hardly spent any time chatting. It was like a girl's day out. The journey passed so quickly and we called in at St Pancaras Station for a cuppa on arrival. Then off to Downing Street.

When I was a child of 12 you were able to walk up Downing Street, it seems so strange that you have to go through security to walk on a British footpath. Alas, this is a sign of our times its such a shame that we have lost that wonderful feeling of being able to walk anywhere and feel safe and secure. Without being too political there was a demonstration going on for Sri Lanka. Would we dare go to these countries and start an uproar, no we wouldn't! We missed out on a lot more publicity due to Joanne Lumley, but good on her getting our fighting comrades a home in the country they have been loyal to.

I was given the box of some 24,000 signatures to hand over, with the help of Dave Anderson MP (it was heavy), I knocked on the door and the butler answered, in a few swift seconds the door was closed again and our hands no longer held the box.

We spent 20 minutes outside doing an interview for the Daily Mirror, please check the link on the side under important links. Then we took some pictures ourselves. Thankfully, as our train didn't leave until 7.00 pm, we were invited to Westminster and Chris, Dave and I had cream tea, unfortunately for John Edwards and Liz Darlison they had to attend another function in aid of Mesothelioma and poor Paula who had pulled everything together had to travel straight back.

After Cream Tea, Dave took us up to the terrace, I was so thankful as I had a thick sweater on and I was roasting, wish up north had the same temperatures as down south! A glass of wine as the sun went down was a perfect ending to the day.

Everyone has worked extremely hard to get this off the ground and I come along and hand it in, how cool was that. The signature count for my friends, family and I was 1066, I said we have to succeed as this is the year William conquered England.

Once again thank you to everyone that signed the petition.

Saturday, 16 May 2009

Can't Sleep

It's been a funny few weeks, on the 4th of May we lost our eldest dog, Tyke, thankfully she died in her sleep, we knew it was coming on Sunday as she wasn't very well. She was just a couple of months under 14.

It's strange as I always thought she would outlive me and I use to worry sick about dieing and the dogs not understanding. I am a strange person as I cry more over the dogs (had a few) dieing than I do over people, why is that. I put it down to the Dog not understanding what is happening. Bless her, my tears were running over her when I went to bed. Part of hubby and I wanted to stay up and sit with her to the end but we knew she would hang on while we were there, all she was doing by that time was concentrating on breathing. On the morning before she was picked up we kept stroking her and giving her a love and I was sure more times than not that she was breathing. Even Chris and Lorraine came up to say their goodbyes and give her a kiss. The other night was the first time since her death that I went to get their evening biscuits, I picked out two and looked for Tyke and broke down in tears yet again. Her ashes will be buried under her favourite tree in the garden

The following weekend I went to a spiritual workshop, it was excellent but by sitting for 3 hours at a time my side was in agony. I popped more morphine for breakthrough pain than I have had to in ages. The same again on the Saturday, but in the afternoon I had something given called Trance Healing. The Medium (called Brian) was superb and on Sunday morning I woke up without any discomfort, it lasted all day. Monday became a different story

I had an appointment to see a Chest Physician, my Doc had made the appointment (I think) when he organised the Bone Scan. We went along to the Hospital for a 9.30 appointment and already the doctors were running an hour late. The small waiting area was full of people coughing and sneezing so I asked if I could reschedule, plus the pain was intense and I didn't want to sit in the same position for another long session. The nurse pushed me in (sorry to those others waiting) and it seemed he was at a loss as to why I was there

I have him the history of the recent events and then he decided that I should have a Network MDT, at last I will finally, after nearly 5 years, have some backup. But the oddest question was put to me, who was responsible for my funding

I mentioned that I needed IMRT (Tomotherapy) together with radiation for the drain sites. He seemed to dismiss the drain sites, again saying it was an old practice that was no longer carried out. I responded by telling him to read all the stories on Macmillan's and other cancer sites, where the sufferer who didn't have this had ended up with seedlings tracking up to the surface

Once again it seems that I have to prepare for a battle to get what the surgeon deems important. I have heard back from Cromwell and have sent the information to my oncologist and surgeon. I think John (Surgeon) will ended up dealing with sorting out the Tomopathy

A lady tracked me down to where I work to find out about UCLA for her father. He has gone the American treatment route by having the lining removed first then onto Chemo. He is looking into cyberknife as well as cryo-ablation. I was quite jealous when he was telling me he had no pain from the operation and here I am suffering. Good luck to which ever route he goes but I will keep you posted as to his decision and maybe we will have more info on the cyberknife if he goes that way. You know me anything new on the market and I will always publish the info. When I looked into the cyberknife at Harley Street, they informed me that delivery would not be till Feb this year so my research stopped there.

I went to see my pain management Doc today and he was explaining why the pain is getting worse, as the numbness wears off the raw nerves are pushing forward and coming into contact with other tissue which causes pain. Together with my fractured ribs that are now mending, he told me to expect more pain. Once the trauma pain has settled the repairing pain kicks in and can be worse than the operation itself. I whole heartily believe that as I have more pain in my side now than I did in hospital. The good news is that my haemoglobin is back at 12.9, but I am over doing it so I promised I will cut back a few hours from work and try and relax more.

Downing Street, fingers crossed, on Wednesday. Between my friends and yours truly we have collected 1,090 signatures to add to NCARD's 21,000. I can't believe the hard work some friends have done. I think the award for the most collected goes to my aromatherapist, Joyce, she did an excellent job with over 300, followed closely by my district nurse Linda

I have had some good reports from the meso circle where the chemo is working and doing its job, its nice to hear some good news for a change.

Chris Knighton held her annual ball last Saturday night, what an excellent evening it was, even though I had to leave early, it was nice to see some familiar faces. Debbie had made the journey up once again and looked fantastic. Her tumour has now reduced 73% and the petition to have Prof Vogl come to England is going ahead. So well done Debbie.

Well I think I will try sleeping again, I wouldn't care but I took a muscle relaxant tonight as well as I knew I would have difficulty relaxing and getting to sleep, yet here I am at 4.00 am talking to you. Lexi got up with me, sat with me while I had hot chocolate and a few cadbury's fingers, yes I did share with her, but the minute I turned the computer on she sneaked back up stairs.

Take care everyone and keep fighting on, your life is ultimately in your own hands.


Friday, 1 May 2009

Ahead of The Mesothelioma

I've had two lots of good news, the cardiologist said my heart seems to have settled down, and although he hasn't made another appointment should I need to see him I can go straight back to clinic. That's very kind of him as usually you have to mess around getting sent back via your Doctor.

Today we went to see John Edwards, he is extremely happy with my progress and I'm ahead of the game where recovery is concerned. He didn't seem that bothered about all my different pains and swellings, although once again we discussed radiotherapy which I need, but the machine that does the type of radiotherapy he wants to do is only available in 3 locations and isn't necessarily geared up to do what he wants them to do. Maybe I might end up in Florida for 6 weeks!! The type of radiotherapy I need is called Tomotherapy so if you have come across it can you please let me know where and who the radiologist was.

The paper petition has gone well for the Virtual Site, between my contacts and I we have 660 signatures so far, still have a few sheets outstanding, so thank you to everyone that has helped gain this number. A pat on the back to you all.

I am looking forward to going to Downing Street, I probably won't be in a position to say anything but having the satisfaction of helping hand over such a large petition puts oxygen back in my blood.

It's been such a long day, Gary made a flask of coffee for the journey down, so no stopping at the services for us then! I am sure he is becoming a penny pincher, he gets excited when He's being grocery shopping and bought two items for the price of one etc. I am getting worried as this is not the man I married.

I will be blue for the next couple of days as we were suppose to go on holiday next week. Our friends have still gone, not that I'm green or anything, but I wish we were still going. If I had known the lung wouldn't come right would I have still gone through the operation, knowing that in effect it will spoil my quality of life as I may never fly again and go to such wonderful places to rest and relax, obviously the answer is YES. Seems the only beach I'll see this summer will be Seaton Carew!

As there's not that many of us out there that has gone through this operation I don't know how many have the same problem. I would love to hear from you if you have.

Not that I should complain really as I am still alive and that should be the most important thing, good job I did so much travelling just after I was diagnosed or I'd really be in the blues.

Sometimes I wish Britain could be moved clockwise by 90 degrees and further south so we had a better climate. I can see that happening in the same breath as a pig sprouting wings!

Seems the fluid has remained at the same level and the air is still in the top, thus if I got into a plane the air would double in size and blow my lung out! John told me today it was still better than doing the full EPP as I still had additional oxygen with having my left lung in place, even it its only has 30% capacity.

My friends were telling me on our short break that everyone was nervous when I went down to theatre as they we unsure whether I would survive. They said they knew I would but they all still had doubts. When it got to 7 hours I think they started panicking, I hate to think how they were when it got to eight thirty and I still hadn't come out!

My tea has arrived so please excuse me while I go and hopefully put some weight on.

Only need a bottle of bubbly now to celebrate all the good news!

Axe the China man