Hospital Stayover because of Mesothelioma

I never thought I would end up in hospital due to a cold so all of you out there, don't waste time wondering should I go to the Doc's or not.  I went to bed Wednesday night a little tight chested and felt like I wasn't getting any air to my lungs, On Thursday I awoke with a panic attack as I just couldn't breathe, well not exactly a panic attack but this awful feeling.  I asked hubby if he would make me an appointment at the doctors and because I just didn't feel well I stayed in bed.  He came back up an hour and a half before the appointment with a cuppa but I still didn't want to get up.  I told him I would forgo a shower (which isn't me) so he suggested calling an ambulance and I wasn't impressed ... you know the "why do I need an ambulance  I just have a cold blah blah" really I should have called an ambulance at 6.00 am that morning, in fact I should have made an appointment last Monday with the Doc and all would have been well.  We arrived at the doc's who turned us around and sent us directly to hospital.  They in turn checked me over and after a few tests  sent me onward by ambulance to the main hospital at Darlington.  Normally I would be kicking and screaming but I just couldn't be bothered, I hurt and even more I was scared, this not being able to get my breath was a worry and although it only lasted for a short while it gave my imagination to much to think about. 

To be honest I think during the day I was having strange dreams and although I knew I was dreaming when I was normal I felt that something in these dreams was important or had something to do with what was going on.  At least that was the sensation I kept getting and even now as I am sitting here I feel the same. 

This morning after spending the night on oxygen and having steroid's fired up my nostrils at 530 miles per hour I felt fine, infact I was helping (or hindering) the ladies being the youngest (nearly 50) on the entire ward of 29 beds! I felt somewhat of a wanted person early on when a young Trainee Doc asked if he could do his assessment on me, then I met another Doc who had heard of me through the Meso meetings etc, of course I was trying to convert them to take an active interest in mesothelioma! The decision was made at 8am that all being well I would be on my way home by lunch.  Well what happens, you all know once you get in you can never get out, that's why I hate hospital's so much. The amount of time you hang around waiting for your mam or dad to be discharged.  Anyway it was my turn, I was leaving (well waiting to leave and as usual pharmacy was holding the job up) then along comes Ann who says that my ECG shows I have a problem with my heart, she says "we know it was there in 09 because you had heart failure and an ECG was taken" but is my heart showing a problem that could have been there for a while was it just an abnormality because of surgery or is it something more sinister?  I saw one of the Chest Doctors (although I wasn't admitted under him on this visit) who told me the lining has thickened, there was talk of an embolism (thankfully it isn't).   So where am I now, well I am home, taking horse tablets for the infection but need to return for further heart discussions and also to return back to the chest clinic.  All I can tell you is that I am totally worn out and will debate further on this tomorrow.

Good News

Just a very quick note as I feel rotten again today, but I must let you all know.

I received an email from a lady who had the operation a couple of days before me by John, She is back to normal and playing golf 2 to 3 times a week. It is such wonderful news that this can give back life and more importantly back to normal.

I don't understand why I am so unlucky but for others out there they should know it can go right. The lady had a worse time than I did in the hospital and left 30 days after operation but without drain in place and no fluid, infact the only painkillers she took were paracetamol. Whereas yours truly came out with more morphine and nerve pain tablets plus drain but only 11 days after operation.

That is all for now but I am sure you are as joyful and happy for this lady as I am.

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

100% Wipe Out for Mesothelioma

Its been quite a journey these last 4 weeks and I am pleased that I have waited till now to write about the operation and the aftermath. I must start out by saying what a committed ward of staff I came across, from Joan the HouseKeeper to John Edwards the Surgeon. In the two weeks I spent at Sheffield I only came across one nurse that shouldn't be doing the job she was. That aside here we go.

I went down to Theatre about 8.30 this was to get the needles and epidural in place, I guess this took about an hour in all and I can't remember anything else of the 15th until Hubby and Lorraine were at my bedside in ICU. My next memory was the pain at 5.00am and I remember wishing I hadn't gone through with it and I just wanted to die, every part of me hurt. Hubby told me that all I kept saying was "I'm hurting". At 7.00am I was hoisted into the air and sat in a chair for a few minutes this was extremely painful and I met my physiotherapist for the first time, a tough cookie called Lucy. They put me back to bed and transferred me to PCU at noon, my new home for 5 days and 4 nights. Alot of this is a blur I had 3 drains and plenty of cables and wires plugged in. My blood pressure kept dropping and every 15 minutes your guardian was checking you over. This was when I heard the good news that John (familiar terms now) had removed all the mass together with my diaphragm and pericardium. I knew he had removed the diaphragm because of having a tube down my nose (most uncomfortable). The operation itself had taken 8.5 hours and the whole operating team were pleased with the results. John (bless him) did get me some photo's of what took place.

Its amazing how every 12 hours your body can improve, I counted off the 12 hours and could see the difference. The tube came out on Pete's shift. How embarrassing having some 6' Dark haired blue eyed hunk of a nurse pull a 36" cable covered in yack from your nose, this was a strange and hopefully never to be repeated experience. Laying in this bed for hours at a time I often gave thought to those who are involved in freak accidents and find themselves in a hospital bed, in pain and confused, at least I partly knew what to expect but for accident victims it must be terrible.

My first night in PCU I could not get comfortable at all, my legs ached, my back hurt where the tubes stuck out, my bum was numb, Infact the only things that didn't hurt or ache were my fingers and toes. If you are contemplating this operation make sure you gain a few extra pounds, me I'm skin and bone so everything hurt, I swear I could feel the pipes inside pressing on my ribs, blood vessels and nerves. I could only drink 30mil of water an hour and my mouth was dry but caked inside.

Why do things happen at night, during the day I would feel fine but come night time my body would start to hurt more and I knew it would be along 12 hours. On Night 2 in PCU the line into my vein decided not to work correctly, this records blood pressure and other bits and pieces, its the vein you can't see but can only feel. The SHO decided I would need a new one I told him how terrified I am of needles, but he assured me that I would be numb as they had to mess around to get the needle in place. The local injections hurt but once they started to work I held the Nurse's hand, and discovered that even at my age there's nothing wrong in showing weakness. I said tongue in cheek to the Doc you only have 30 minutes to get that in after 45 they gave up, the needle would not go in at the right place and they were taking no chances in causing infection etc by prodding endlessly into my wrist.

Day three one of the chest drains came out and was I pleased I thought it would make a lot of difference to the pain but it didn't, I also had a bout of diarrhoea, it was just as John was leaving my bedside after discussing the tube removal and progress. I asked for a pan but oh I was unlucky and the smell was unbelievable! No where to hide either. Thankfully it wasn't any virus just a build up of all the pain killers and drugs given over the last 96+ hours that hadn't come away yet! Embarrassing for me was the bed bath that followed then handing over the pj's to hubby.

The time in PCU did pass as a blur, I use to be sat in my chair and do bike exercises, this was to get my lungs expanded, I'm sure sometimes I would sit for an hour or two just pushing the pedals round. The epidural came out so did the catheter. I must be the only person who wanted to go but couldn't, I sat on a commode for an hour, then the toilet for another hour, then had lunch and tried again, still nothing but all the time the pressure was building up. I turned the tap on in the toilet thinking that would spur me on but all it did was make me more aware of this pressure build up inside. I had to be re catheterised, did I care not blooming likely, Just get that pipe in there and give me some relief and by god did it. I had a water infection. So for another 24 hours I was catheterised, did I care no, it was the only wire that didn't bother me.

My first night out of PCU and no epidural saw me lifting in pain, and I mean lifting. There was no way I could get comfortable, the staff didn't seem interested in anything other than making themselves tea and toast. I was out of bed every hour during the night but I could only be drip fed pain killers, whereas if I was at home I would have dropped 40 mil of severdol, if that hadn't done the trick in 20 minutes another 10, by the time morning came I was lying on the floor hugging a foot stool. Thankfully someone from pallative care came over but I was still only allowed a small hit of morphine everyhour instead of a large dose to get ontop of the pain. It turned out I ended up taking something like 600mil of morphine in that one day. This is always a problem for anyone with cancer who is on morphine, your daily balance needs to rise when you've had surgery and also you need a much higher dose to get ontop of the inital pain, once there you can drip feed 20mil to 40mil an hour to keep ontop but you rarely find you need to take anymore for at least 4 hours.

When I moved wards I finally got to meet Pat, who had gone through the operation the Monday before me. It was good to actually meet someone else who felt like that had been ran over by a bus a few times. Pat actually never complained of any pain, so it shows that we are all different. Where I was in agony, she suffered nothing, whether that is down to the amount of treatments my body has gone through and the fact that Pat hadn't had any I don't know. Pat unfortunately had to go back down theatre and that's when she did confide that if she had had to do it within 48 hours of the first operation she didn't think she would pull through. I remembered the fear of being sick and if I had been I would have been rushed back into Theatre and I knew what she meant as I doubt I would have made it through another operation.

I think I have written enough for now I'll let you all digest this amount and will continue on a new posting another day.