Sunday, 21 December 2008

Nothing New

I can't believe its less than a week to Christmas, nor can I believe I am still waiting for an appointment for this PET Scan. I may be able to get in at Sheffield Christmas Eve but that's quite a trip.

I still don't know which way to go, part of me hope's the Scan says its not possible but the other part of me hopes its the answer to my prays.

I know that Dr Abtin and Dr Edwards have been in contact and by Dr Abtin's email it sounds that he has pointed out favourable reasons for me to go through it. I emailed him back along the lines of "are you crazy pointing out all these favourable grounds for doing it!"

My Eldest brother told me I should switch off for a couple of weeks and enjoy the holidays, sometimes I don't think other people realise how hard it is not to think about having such a terrible cancer. I go to work to switch off but you can't do it for 24 hours a day.

You would laugh, after telling me not to think about what to do etc he then went on to ask how I felt and if I had an appointment for the Scan. Beggars belief he's pushing it back into the forefront of my mind!

The dogs have found their stash of Christmas presents and keeping sneaking down to the room to have a sniff. Our Tyke can open her presents (of course they get wrapped!) like a human, Lexi on the other hand hasn't a clue, but that gives Tyke more to get excited about when Lexi leaves hers unopened.

Had another session last night, although it was only mild. When they start you feel dread at the pain that is going to overwhelm you. Within 20 minutes the morphine had it under control, I am pleased to say that only 30ml did the trick, which shows some improvement.

I was talking to Ann at work the other morning and described meso like a boiled egg, the shell is the lining, the yellow the healthy lung and the white the meso growing round it, If you could peel the white off without any problems I would be on that operating table in a flash. Ann lost her brother to meso just after she started working with us, this was about a year before I was diagnosed, so you see I have inside information on what is to come towards the end and I really don't like it.

Nobody but the person going through it actually experiences the pain or the terror and yet we hide it from the ones we love. When I start a session my husband goes into overdrive, he wants to force morphine into me every 2 minutes, I keep telling him to hold off as it needs to take affect and thats about 15 minutes. But when he sees me in such agony I can understand his motives as he wants to stop the pain, I usually start at about 20mil in case it isn't going to go the full out session, caution in case I take too much for a little pain, he would have me start on 40mil. Last night I went 10, 2 minutes 10 then 5 minutes 10 and stopped at 30. The after affects of the session leave me tired and strung out. Typical as I wanted to watch Strictly Come Dancing Final! Instead I felt like I had been in with Mike Tyson doing 12 rounds of boxing. I should have known it was coming but the tell tale signs weren't as strong as normal. It was actually 3 days earlier than expected. I keep records of dates and these sessions are running at about 10 weeks, sometimes it changes pattern and I can only go 4 weeks between them, so still ATypcial Mesothelioma. Nobody has been able to explain them but I think the meso has a growth spasm and annoys either my heart of my diaphram.

Another Meso associate on the Germany chemo-emoblisation treatment flew out to Germany last Week, his first course hasn't reduced but encapsulated the cancer, not sure what that means but my fingers are crossed that it means it has stopped it growing and the next lot should see a reduction. He has a tumour that goes from the top of the lung over his collar bone and down the other side, if you say prays please include him in them.

That's it from news Jan's Journey, still alive and kicking. In case I don't write before the big day

Wishing you all a Merry Christmas and a very prosperous New Year

Saturday, 13 December 2008

Life and Meso

Here we are Saturday again, another week has flown by and Christmas is breathing down our us. This time last year I was on chemo and had an excuse not to get into the Christmas spirit, but I did get into it in case it was my last. A dear friend phoned during the week and as I was saying how unseasonal I felt she jeered me on. "Look at July" she said, "Morphine and Champagne, bouncing to Sir Elton John and trying to sing your heart out, Tell me you haven't lived!"

You know, she is right, I have still maintained a normal life, and I had forgotten about watching Sir Elton at Darlo in July (but it seems years ago). We went on to discuss doing the 5K the year before, how I managed that I'll never know, my kidney was in abject pain!

The year before my friends had done it on my behalf for Mick Knighton Meso Research Fund, this year my colleague Claire had rounded up the girls at work and with my friends and I we did the race. Not only did MKMRF benefit but so did Cancer Research. We spent days sending out letters at work to all our Suppliers and Customers. Instead of money a company sent us a DVD player and that led Claire and I to organise a full Dinner and Auction night, another round of letters were sent asking for tables to be taken and prizes! Two of us alone organising such a large event, we managed .. just. The amount of prizes we received for MKMRF dinner were amazing, I guess it helped that I suffered from meso. We had over 60 Auction lots and 70 raffle prizes, the poor DJ couldn't play any music as we spent all night reading out numbers inbetween the Auction. We organised this event in less than 8 weeks. (That's the picture with Chris Knighton representing the MKMRF on the night) Claire wants to do something dare devilish next year Any Ideas! and even more importantly any backers?

I guess what my dear friend was saying on the telephone was that I have never given up and to give myself a good shake, get the Christmas DVD on, the tree up and start enjoying, block out any decisions till after Christmas, she agreed that this is an impossible task but she said "your a woman multi tasking is not just physical its mental too!"

Since then I have cheered up, I went Christmas shopping on Tuesday and Thursday, still having trouble trying to find the right present for the right person, you know how it is. On the monday I was embarrsed in one of the stores as my card wouldn't work. I decided to call in the bank to see what was wrong only to be told I was unable to use the card as it had been cloned. Fantastic, I thought, how the *ell am I going to buy presents now, thankfully the PB let me withdraw some cash otherwise I would have returned home empty handed.

The Sales are a nightmare, there isn't much room between rows of goods and your constantly being knocked from side to side, don't get me wrong I like the thought of such low prices, but they seem to overstock the shops. I usually stay away when its Sale Time because you can never find anything under the additional piles and racks they bring in.

I tend to get more shopping done when I go with my best friends, when I go with Hubby its usually "What do you want to buy them that for" or "Well if you really think so", yet when I come home laiden with goods he goes "Wow what a fantastic idea" or "that's a really good gift" Is this normal in every relationship out there?

I still have to go shopping and finish off, I haven't got hubby anything yet! (although the dogs have) The weather has really changed and my friend hates the cold, funny that thinking about what I've done to it. Seriously, I can be boiling up everywhere but my back, it seems to work on its own temperature, and when I go down hill it always starts with my friend making my back ice cold.

It's our Office night out tonight, I have missed so many but tonight (all being well) I am putting the glad rags on, using loads of makeup and going out. Claire made me promise yesterday that I wouldn't overdo it today so I had enough energy to stay awake and come out and play. So the only bits I've done today have been light duties.

We feed the birds, usually have a few trays of seed on the kitchen windowsill, watching them all fly in and peck is amazing. So today we mixed some fat and seed together and set them in those coconut shells. Last year the green finches would tap on the window when the seed was all gone. The birds are still nervous as when you open the window they take flight and wait until 10 minutes later before returning to peck at the newly filled trays.

One last thing all those with meso or carers of sufferers I hope you have filled in the questionnaire on the British Lung Foundation website .. shame if you haven't.

Hope your shopping is going better than mine, Christmas Tree up tomorrow with a glass of baileys and Christmas Carol's in the background, I'm sure I'll be in the festive spirit by bedtime, so if your putting your decorations up tomorrow lets have a toast "To another year and many more to come"

Tuesday, 9 December 2008

Pondering Still

I thought I would thank my meso mate, without her words of comfort the other day my mind would still be spinning round like a kids play toy. We both have this disease, we've never met but are so in tune on the email, its wonderful. So once again THANK YOU.

I managed to go to work yesterday, on the drive in I was thinking about a fellow colleague and his wife, as I hadn't spoken to them since leaving for USAvand vowed to ring as soon as I got in the office. He had only worked with us 6 months before falling ill with Bowel Cancer, by the time he went to the Docs it was too late, the cancer had secondaries on his liver and lung. As soon as I took my coat his wife was on the phone. Unfortunately Graeme had died on Saturday morning. The tears rolled down my cheeks and for a start of what I was hoping to be a brighter week went straight out of the window.

Graeme had put up a fantastic fight, he had to change Chemo treatments twice but when I last saw him in October he looked thin but well. His humour was still at the forefront and his positivity shone from his eyes. Although he wasn't with us as long as the rest of the crew, he will be missed by everyone at work.

When we die we die but its the ones we love left behind that I feel the most pain for. I often worry what will happen to my hubby when I'm gone, I've told him several times he has to get on with life and find himself a new partner, I can't bear the thought of him being on his own. But how will I feel when I'm haunting him and see him kissing and cuddling someone else? How would I cope if he loved his next partner more than me?

I do believe in life after death, infact I hope I get a nice little cloud that doesn't take much cleaning, but seriously, do you think we still get jealous watching from above? I guess noone can answer that as we can't come back and tell.

Also want to wish another meso man good luck for Wednesday and I hope his results are good from Germany, and that the needle isn't too bad this next time round.

That's it for now, just wanted to thank Meso Mate and say something for Graeme

Thursday, 4 December 2008

Information overload

What an amazing morning, looking out over the fields at all the snow. Obviously the dogs simply love the snow and hubby made a wonderful snowman for us all to enjoy. It's hard work keeping the dogs inside as you can see they are both wanting there toy's rather than sit and have a photo taken with me.

I had decided to work from home today last night as yesterday, Wednesday, was a nightmare of a day. I had an appointment in Sheffield Northern Hospital to see the surgeon and due to the weather we decided on the train. My appointment was 2pm so we went for the 10.10 from Darlo, only it didn't come in till 11.45. So giving ourselves and extra hour and a half turned out we were 15 minutes late. Being the polite person I am I rang the hospital and told them we were running late, so if someone was there early they could jump the que. As it turned out we didn't actually get to see the Doc until 3.50 and we needed to leave at 4.15 for the last train out of Sheffield to Darlington. This was another blunder, the hospital kindly booked us a taxi for 4.15 but it didn't show. By 4.40 hubby was standing in the middle of the road and managed to flag a taxi down. It was rush hour in Sheffield and the road, only 3.5 miles to the station, was backed up with traffic. I felt like crying, I was cold, tired, hungry and by then totally sick to my stomach from our discussion.

Hubby had ate nothing all day and had a bad headache, I still kept feeling dizzy. The Doc is the kind of man that tells it like it is. The worst thing I heard was that had I seen him four years ago removing my pluera would have been a much simpler procedure. We asked so many times in 2004 and 2005 why the pluera just couldn't be removed and we were told every time that this wasn't done.

No wonder so many patients get stressed out, information is never passed around, the only operation around in 2004 was the full monty and the percentage on that was 1 in every 2 died on the table. No-one in their right mind would take those odds, even me.

He painted a very bleak picture of what would happen, because I have another tumour under the diaphram, and because I had cryo first, he isn't sure whether it would be easy and give any benefit. The worst is the fact that I would have a cut from the top of my shoulder blade right down the left side and curving inover by the last rib, I guess about 20" in length. Its not the scar I'm worried about but he said it could cause a lot of nerve damage pain and there is the possibility he might just open me up and close me up without doing anything.

When we got on the train to come back it was full, hubby got a seat with another women and I sat on a single. Because we were unable to talk it through, my mind was working on overdrive, Gary's headache turned into a pounding one where even moving the head hurts and by the time we walked through our front door we were both exhausted. So he didn't sleep and I dreamt about surgeons knives all night!

I have spoken to my two best friends and they both think I shouldn't consider it, my eldest brother (always the optimist) didn't want to comment and I haven't told my other brother yet.

Apparently there is a meeting happening regarding lack of information given on treatments throughout the UK lets hope that some form of standards is given and also away that oncologists can be updated about other options. At the end of the day oncologists mainly deal with the drug side only, this should be changed so they can investigate all types of treatment and like a supervisor, everyone should report to the oncologist who would still be the main point of contact for the patient.

Why is it that we never find out about what can and can't be done if you are in a different region. As I said, when I was diagnosed I had a set of curtains hanging off the lung and small spots on the chest wall. Even if the pleura had been removed in 2007 I would have been in a better position and the cryo could have removed anything that the surgeon was unable to pull away. Now I'm in the situtation that if I go through surgery the Doc isn't certain how peeling will affect the tumours already cryo-ablated. Always a chancer I would take the risk and see what happened, but the thought of Intensive care, large cut and nerve damage, loads of those awful tubes sticking out of my body to drain air and blood isn't what I envisaged for the start of the year.

Before any decision can be made by either party I need a PET Scan. Well we all know how long they take to get in for.

I asked about length of survival after the operation and he said they hadn't ran a trial on it, I don't believe in trial info as its not really right. If you have 10 75 year olds go through it and 5 die within 6 months while the remainder die within 1 year and 10 60 year olds who die in 2 years the average is 65 years and 12 months. Why can't they publish 60 - 70 extra survival 1 year, 50 - 60 extra survival 5 years etc. Not 100 on chemo against 100 on surgery and mixed ages, it tells us nothing.

I'm still under 50 and healthy but he couldn't give an answer, you have to take in the fact of how much meso is left, rate of growth etc. and as us sufferers know, it can change overnight from remission to full all out warfare on our body.

Guess this is for me to ponder over for the next few weeks but any comments to guide me one way or the other would be appreciated.

My poor hubby has just dressed up like the mitchlin man again to take the dogs out, they are loving rolling around. I think the snow is starting to melt but darkness has fallen and its hard to see what's happening out there. I had some early winter presents this morning, a padded jacket suitable for the highlands in Scotland, thick antartic socks together with mountaineering gloves, all these to keep me warm.

I use to love walking our dogs but they are terrors on leaders and pull better than a steam engine, this is because hubby prefers taking them over the fields and letting them run. I keep threatening to take them for a proper heal walk but I get so cold so fast, hence the padded jacket, I too will look like the mitchlin man, so if you see me out with this bright pink jacket being pulled at 60 miles an hour don't wave as I'd never see you flash past my eye's.

Enjoy the snow and no doubt I will be back on pondering my thoughts.