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

Visit due at Clinic

Well its that time again, a drive to Sheffield, fluid splashing around from one rib to another and all to see how I am.

Do you think I will find out anymore about radiotherapy or tomotherapy, I bet I am still left out in the cold and come away knowing nothing more.

This weekend I slept and I mean slept, I went to bed about 10.30 on Saturday, I woke up at 11.30 am (just in time for a late breakfast). I had a quick shower and said to Hubby lets go out and off we went. His words before we got into the car were "Are you sure your up to this?" We got 2 miles down the road and turned around I felt a little sick. We came in and I crashed on the sofa, I raised my head at 4.30 and had a few mouth fulls of tea before crashing back out again. It was 6.30 when I finally woke up and managed to stay awake. Poor hubby had sat playing on his ds lite and didn't dare turn the TV on incase he woke me up (bless!).

At least I have caught up with my sleep for a few weeks.

Yes I still have pain (Acute pain is hard to say how bad as the painkillers keep it under wraps,) so that means ..yes I still take pain killers, Yes my chest still feels like an iron cage is attached to my rib cage and is too small for my body and yes I have started getting all my sensations back but if I touch these areas they are extremely tender. For some reason even my stomach is now tender, is this the stitches holding the diaphragm in place or is it something different.

I am extremely pleased to be alive and yet I still complain about pain! How can anyone possibly put up with me. I have outlived the predictions of dying I am still here and for all the complaining about pain and tablets I am really happy. Having read some people take such a long time to recover I should be over the moon that within 2 months I could go back to work and keep my hand in. I do think I did return a little too early in hindsight but I don't think it has left me with any long term problems.

We go through treatment so we can get on with our lives, yes our lives so why do we worry what the Doctors will say about overdoing it!

Promise I will let you know what happens on Wednesday.

Good luck to Alan, his tumour has reduced and fingers crossed he stays in remission.

Keep up the fight everyone.

Meso thoughts

Once again I find myself thinking about this disease, I guess I am lucky as at present I should still be cancer free but you can never tell. When you don't take much in the way of painkillers you can tell instantly when this cancer is growing but when your on a lot of painkillers your not necessarily out of pain but alot of it is hidden away.

I was reading on macmillans site that a guy was still having pain three years later, I looked at the down side of the pain and hubby looked at the positive side as he was still here three years later to mention the pain.

I was also flattered and embarrassed to read that others have found me to be an inspiration to others. I am pleased that I have been able to help others, and I am sure Debbie Brewer is as well. Those with meso need to share anything new on the market or tips to help each other over the rough and be there for support.

The sunshine has certainly cheered me up but again brought home the fact that I might not be able to fly ever again. At home you never seem to relax and lie out do you, your either thinking about what to get ready for tea or feel guilty because the ironing is stacking up!

I actually had a few beves the other night, and for the first time in years I found myself feeling rather tipsy, it still didn't help me sleep but I did enjoy the taste.

Keep fighting the fight and good luck to everyone

Energy and Mesothelioma

Here I am 20 weeks on and looking good (thank god for medication!) Believe it or not, although I have lost weight I have a 2" spare tyre round my stomach I will have to start doing some excerises to tighten this flab up!

I don't know whether the EPP group suffered from tiredness for a long time after, I know I am. Also sleeping is a problem during the night, I wake up every hour so I'm missing that lovely deep sleep.

Have no new news about NCARD or the government's decision, but am seeing John Edwards in clinic soon so I will be asking how its going along.

I wonder if the fluid has reduced or the airleak cleared up,If it has I'd would be straight on the phone booking a holiday. Good luck to you all and wishing you well

Jan

Mesothelioma and Medicine

I know another week has gone by and for those who are recovering from operations or chemotherapy its wonderful to know you are another week through the pain and the side effects from the chemo as well as becoming more like your old self.

Last week I was quite down and by Sunday evening hubby decided to look at the leaflet that came with the Duxolatine, (the nerve damage tablets), and highlighted 8 of the side effects and a possible 4 others. The dose had been doubled to 120mg a day and obviously the side effects stood out because the dose is so high. I Must admit I had no pain at all in my side the entire time I took this amount, so the morphine wasn't been used for breakthrough. So Sunday night I didn't take a one and have started to feel a little better, at least on Monday I could cope with the sunshine!

I remember the second time I had to go through Chemo. I never thought I would need to have it again, I was so sure that I was different and the Chemo had worked in 2005 and killed the cancer for good. Unfortantly that didn't happen and in Sept 07 I was back on the stuff again. I know that some people handle it really well and don't get as ill as I did. I started writing my story about chemo but I found it quite emotional, my friends keep asking me to finish it but in some ways this blog has become my story, whether its read by only me or not doesn't matter. A few people keep telling me to write a book but I would prefer the humourous to the serious and I'm not sure I could do it. So please (if I do have readers) ignore me now and again when I start going off on one.

Any way as I was saying I started writing my story but didn't finish it, why? because I started writing it at one of my lowest points, and on chemo you tend to find as you go through the course you do get lower and lower, but it was good to read and I would recommend anyone on Chemo to try and write down your feelings so when your well you can go back and see what you have gone through and how well you are doing.

I wish I had set up a video diary or something, more so after this operation, because I forget how bad I was and then when I start whinzing about not improving I could see how bad I was and how far I have come.

We went out to dinner on Friday night with the couple we should have gone on holiday with. They haven't seen me for months and were so pleased that I looked so well. Even I thought I looked well. The evening ended at 9.30 so I would be home by 10 and in bed by 10 past.