Today wasn't good

I decided to go to bed without a relaxant, bad idea.  I laid in pain from my shoulder for an hour but I was determined not to take anything.  I still had bad sweats and this morning was no joy waking up.  I got up at 8 and made a cup of coffee but I couldn't drink it.  I was hot and cold, but I knew the nurses would come early today and I wanted to be showered and dressed.  

I slowly climbed the stairs and felt terrible, Gary had to help me wash my hair.  Breathing was painful and I was sure it was down to the shoulder.  I wanted to lie down into a ball and sleep until the pain went.  I managed to get back down to the living room and sat on the sofa.  The pains were making me feel physically sick but I couldn't face drinking anything or even taking my normal meds. The nurses arrived, took one look at me and rang my doctor.  I didn't want them to drain as I think I am dehydrated, even though this fluid isn't helping me, drawing off would make my BP drop.  I cancelled the physio as getting to his clinic was out of the question.  My doc arrived and gave an anti inflammation injection into my backside.  He needed somewhere with muscle to inject, he moaned my skinny bottom didn't have much either.  The injection sent some heat to my shoulder and it seemed to lessen the pain.  I started to feel normal and hoped this was the end of it.

Lorraine arrived for a quick coffee, this gave Gary a chance to take the dogs for a run, knowing if I went downhill Lorraine could cope.  Joyce then arrived, a little get together was forming, thankfully by then I was feeling better, a protein drink and some juice was now in my system.  We just got settled into a conversation when the nurses arrived back, it was decided they would drain.  Peeling the dressing off was painful and I yelped like a wimp, they said we could leave the drain out and only change the dressing once or twice a week.  Sounds good to me.  It started coming out fast then slowed, a pain shot up my back and I had to stop the drain.  We managed 700 litres but I didn't want to continue.  Joyce offered to massage my shoulder, which would probably help, but knowing my luck something else would go wrong, so we didn't bother.

It's been a hard day, my body is still recovering from the trauma, my mind has also had a wake up call - the cancer is real, it has made my stomach swell, leading to a drain needed to be fitted.  I am not dealing with my body trying to protect my organs by creating fluid and robbing protein and salts from  other parts of my system.  I can't escape to work and put this away in the corner of my mind because I am in pain.  

I hope tomorrow will be better, I don't want to go through another morning like this one, not only does it hurt it makes Gary feel useless.  I keep telling myself its early days and once my shoulder feels better I will cope with the other pains a lot better.

Being positive is great when you don't hurt but trying to keep it going when you feel so ill doesn't work.  I thought the cancer had won this morning and my body was getting ready to shut down.  Thankfully that wasn't the case.

No Longer in Control

I guess over the last 6 years I have to some extent being in control of my life, my illness and how I have dealt with it.  From pain management to finding treatment has started and finished at my own door and if I got it wrong then it was my fault.

Now I have a drain insitu I am not in control anymore.  I have to start having a routine that remains the same.  No longer can I just get up, read the blogs, reply to emails, check on face book then have a shower and either go to the office or work from home, but all at my own pace, some days fast and early, some days slow.  I need to become regulated, sounds like health and safety in a factory floor!

 

I will have to be seen weekly by the district nurse once I start controlling my own drainage.  I will need to start having a new morning routine, a one that works to a time.  Draining will need to be done about the same time each morning.  I will probably shower first, to help dampen the dressing so I can peel if off, then drain.  Pointless doing it a different way as if I shower after draining then the patch will be damp on my clothes.  If I do it every morning the fluid doesn't then absorb all my nutrients everyday.  I am hoping to gain some muscle back around my shoulders and chest but time can only say whether this will happen or not.

 

My wound is extremely sore, the stitches are tight and of course it doesn't look nice around the pipe that comes out.  Reminds me of that large tube when I was discharged back in 2009.  The pain is still in my side and towards my back, probably my liver settling back down after being forced from its normal living area. 

 

Yesterday I took an additional 100mg of morphine, 2 lots of 50 to get me through the day, I also took another muscle relaxant last night to ensure I got some sleep.  I soaked the bed again last night with sweat but didn't notice it as badly because I slept deeply.  Movement is still causing a lot of pain, either in the shoulder or the side and climbing the stairs is murder.

 

I know in comparison to operations I have undergone this is nothing but pain is pain and mars our life something cruel.  I will have several district nurses, depending on rota, Linda who came yesterday and this morning knows me from the big operation.  I told her I was hoping to go in the office tomorrow, she paled and told me I can't.  To be honest I think I would be stupid too, sitting at the desk is ok but having to move is something else.

I could feel the fluid building up and when I got up this morning a large volume had already gathered on my left side.  I couldn't wait for Linda to arrive, clock watching until the time she thought she would be here.

 

I was going to give it a go myself but the pain of trying to remove the dressing was bad enough, any tugging made the pipe unbearable.  The minute we tapped the fluid poured, I doubt it even needed a vacuum on it, the first litre was out in less than 4 minutes.  We changed bottles and did another one.  The flow didn't falter.  There is still a lot more to come but in the community we are only allowed to take 2 litres at a time.  Seems strange when having a procedure done we can drain much more off without a problem.  As the fluid was draining I could feel my stomach shrink, its amazing to see, I guess in reverse of a camel filling up its humps with water!

My two full bottles
 

I am the most oddest shape sideways, I wonder whether this will change or I will remain like this.  I know a few ladies who have gone through breast cancer and the mental anguish they have suffered because they don't feel like a woman any more or attractive to their spouses.  I have always tried to have empathy and I know this isn't the same, this is my stomach for heavens sake.  But I have scars that can be off putting and now I have a pipe sticking out of me and am the strangest shape of any human being.  I know that beauty is skin deep and that love doesn't see the scars or the shapes but in our minds we start getting a hang up about it.  I went through this, quietly, after I realised how ugly my body was after the operation, would Gary still want to hold me.  His hand feeling the crevices in my skin, the tightness over the shoulder blade and down the ribs, the strange lump that is in my left breast, now he won't dare hug me tight in case he feels the pipe pressing into his own flesh.  At least before he could always hug my right side, now he can't hug either.  We go to sleep with my lying on my left side and him cuddled up behind me with his arm resting over my waist, now he can't do that, my new appendage will be in the way, plus I doubt I could take any pressure on that area.  We can never fall asleep properly unless we snuggle up.  Ok I have slept the last couple of nights only because I have taken something, whereas Gary has laid awake for hours keeping watch over me.

 

I also read this morning one of our friends lost a really good friend suddenly this morning.  We met him a couple of times while on holiday in Dubai, Eugene was the perfect gentleman.  He worked at the Burj's front desk for customer services and what a nice fellow.  So sad that for years he worked in Dubai to support his family back home and then he went back this year to be with them to die suddenly.  How unfair is life sometimes. 

 

Each day the whole human race is battling through life, some don't realise how good life is and take everything for granted, others suffer terribly - young children born just to starve to death due to ignorance.  Those who are addicted to drugs that make others rich but can't help themselves and end up destroying their bodies.  Then us who have cancer, we appreciate everything but suffer in so many terrible ways.  A young mother wrote today 'Why do those who do wrong never suffer'  her life was damaged by mesothelioma then she discovered she had breast cancer.  I read this and thought the same, I've worked hard, I have never intentionally hurt anyone, tried to look after my body (ok sometimes I may have drank too much) but overall have done nothing wrong.  You will find many with cancer have never done anything wrong yet suffer.  The annoying thing is that drug abusers probably have more money per capita spent on them in the NHS than us with cancer do. 

 

They will be getting benefits, probably free housing, kids taken care of, frequent visitors of A&E or hospital beds, rehab that costs a fortune and the stuff they use makes some people rich and they don't even pay tax off the sales.  They beg in the streets, some making more than the average wage earner then they just waste it all on getting high.  Not even mentioning those who rob and destroy people's lives but they don't pay nothing back into the country.  Yet terminal cancer is seen as a heavy burden on the state!  Drugs which are needed are denied because they cost too much.  We know that pharmaceutical companies charge a fortune but then they have spent years developing drugs and that costs so I can understand them wanting to make as much money as possible when the drug works - that's a different discussion.  Yet cancer patients, well we've paid our taxes, we've worked and raised families, took responsibility of our lives and when it comes to us needing help we are seen as a burden.  The Government are wanting to override NICE to ensure terminal patients, indeed all patients with rare (I know ours isn't rare but it is still classed as rare) cancer can have drugs that aren't on the standard list.  What is wrong with NICE?  They don't say we will stop treating drug users do they?

I guess that's me done for the day.  Time to let the additional morphine work and give me some relief from my pains.  To those suffering in treatment I feel for you and for those in remission don't do what I did, live don't put your life on the back burner believing you have another day, do it now.

 

 

Progress but sad news too.

It took some 3 hours or more to write the blog yesterday, I started and stopped and rested and just as I finished it and Gary had took the dogs out the door bell rang.

 

I was still in my dressing gown, the pain in my shoulder and side both unbearable that I hadn't wanted to move and shower.  Now the District Nurses had arrived and there was only me.  I let them in and apologised for being lazy, they asked about the drain and I ended up breaking down in tears, telling them the problems with the NHS and how I had been discharged and never heard from them again.  It all started over how many drains had James Cook discharged with me.  I said none the rep from PleurX had given us two but I hadn't been admitted let alone discharged and so the tale began, going back to July.

 

I didn't want to drain off yesterday, one because my wound is sore and the other because I only had 2 drains.  The drains were ordered from the manufacturer for delivery today, which have arrived, Dan the male nurse said right 'lets drain it off''.  

 

I am sure I have trapped a nerve in my shoulder, all through the procedure I kept my arm above my head and at times fisted my hand, pulling the body into an awkward shape.  So trying to get my arm in a comfortable place and not hurt my side, which any turn was also painful was a nightmare.  Finally we managed to get the dressing off, wow was that pleasant - not!  The wound is neat but sore and some bruising is appearing but under that suntan its hard to tell.  The drain connected and I started draining.  Although my stomach looks to be holding some 2 plus litres I only managed to get 700 out.  If I hadn't had any drains coming I would have bent this way and that to try and dislodge the fluid but I accepted defeat and we unhooked.  Mind 700 isn't a small amount.

 

They left us and I sat for the rest of the afternoon on the sofa watching mindless television.  My body hurting but relief that I won't need to undergo any more pain.

 

Lisa, my friend from America sent me a beautiful vase of flowers together with a teddy bear, at first we had no idea who they were from as no name was given and I even phoned the shop who told me they had no info but even if they had they would be unable to tell me who they were from.  Great!  But a message on face book cleared up the mystery.  I now have a mascot which I am trying to name.

 

I took a good cocktail of pills to go to bed with, exhaustion doesn't stop pain getting into your sleep and I needed to make sure I had a good night. 

 

This morning Gary took a sad phone call.  A lady I have become good friends with died last night from her mesothelioma.  Lesley was never a computer user, we would talk weekly on the telephone and keep each other updated with life.  We had planned to meet up this summer and have coffee but things always went wrong.  Lesley lost her husband this year then her mam, then I was ill.  She had gone through surgery but never seemed to get her breath after that.  I kept telling her to get in touch with Liz or go back and see her doctors.  She always told me she had and things were fine but they weren't.  She was only 61 and this last year had lost nearly 2 stone, her doctors weren't exactly giving her tonics that would get her weight back.  She was very religious and I hope that she is now at peace and with her husband, George, in heaven.

For Lesley
 

I had better try and shower before the District Nurse arrives, one thing that did happen yesterday they have contacted the MacMillan Nurse and I am now back on the books of having one.  She will be out next Wednesday afternoon to meet me.  It's been a long time since I had a MacMillan nurse, hopefully my new one knows something about mesothelioma.  Although Liz thinks I probably know more about pain of meso than the nurse will do and I bet she's right but I hope not, it would be nice if someone could give me something I knew nothing about and it took the nasty pains away.

 

One thing that cheered me today in the post we received a wedding invitation, my friend Dawn's son, Dan.  He is marrying his sweetheart in Plymouth.  I am shocked that Gary and I are invited as we haven't seen Dan for years and feel so privileged to be thought of on such a special day.  Fingers crossed we will be able to make it.

Inserting the drain

After the long journey to Leicester, In the UK anything of 5 hours round trip is a long journey, I felt terrible the next day.  I didn't even muster the energy to get showered but opted for a bath and as late as 4.00 in the afternoon.  It was like watching a beached Whale thrash around in low tide.  My day was bad but I had to hang out for one more day, D Day, no not the end of the war but Drain Day.

The alarm went off at 7.10, I had just got to sleep at 5!  I felt lousy but thankfully I didn't throw up bile like the day before.  Gary rang the ward at 8am to be told they didn't know whether I was on the ward or not so would ring us back.  In the meantime I went to shower, I heard the phone ring then I heard Gary come upstairs, he was sobbing and my heart stopped.  The relief of being told we could go brought his emotions to the surface.

We arrived at 9.00 am, the procedure was booked for 11.00.  We sat in a little interview room opposite what was my bed.  At 9.45 am I was getting anxious, although a few nurses had kept walking past not one had looked in our direction. So I went out to the nurses station, no one around.  A nurse kept walking past but ensured she never once caught our glances.  I went back out when I could hear more voices, this was 10.15, lots of people were talking to each other, all different coloured uniforms I kept my eyes on one and she finally asked can I help you.  I explained I was in for a procedure at 11 but as yet hadn't been admitted.  She took my name and said go back to the room.  Within a couple of minutes a nurse popped her head in the door and said that's your room, pointing to the side room which had been empty since we had arrived.  She said she would find my nurse and off she went.  A nurse then came by said her name was Kim and she was my named nurse, she said she would be a few minutes then went. 

 

I looked at Gary, time was ticking on so I suggested maybe he should go to radiology and let them know I was here just in case they thought I hadn't shown up.  On his way out he saw someone and asked if Radiology knew I was here, the lady assured him they did.  As he came back in another nurse came and said that they had been expecting me at 8.30 and why was I late?  Another right hand and left hand!

 

An Auxiliary then came with the equipment to take my vitals, BP was good at 111 over 74, temp my usual 36.5 and pulse was high (nerves).  I still hadn't been admitted.  Another nurse came with my operating gown and said can you get changed your going.  I still hadn't been admitted but who cared.  I was wheel chaired down to another ward, a outpatient procedure ward (still can't understand why I couldn't have just been admitted on this one?).  The nurse introduced herself as Wendy and that the two ladies sitting in the corner would be coming into the procedure to watch.  No asking mind, I was told!  They were the representatives of PleurX the manufacturers of the permanent drains.  I said as long as Gary comes in I don't care, she gave a look as to say No he can't.

 

My nerves starting before the procedure

Dr D arrived and told me how they would fit the drain, I wish I hadn't asked!  Gary was dressed up in the full X Ray department cover, the iron vest, the thyroid cuff and then the blues for the sterile environment we would be in.  The procedure is done where there is a large X Ray machine, lots of video screens and an Ultra Sound machine.  The room was quite spacious.

 

I laid under the x-ray machine, nearly everyone stayed in the room and not the other side of the glass, I saw the nurse loading up the needles, long needles being filled with lignocaine and felt my heart sink.  The procedure is similar also to having a hickman line inserted. 

 

I am not brave anymore, I have endured countless operations and procedures, gone through pain that no one should have to both with operations and the pain of the cancer itself, and it has taken it's toll.  Never again could I endure a tooth repair without an injection, that girl has gone.  But in order to make a start you still have the initial pain of a needle. 

 

My skin was so tight with the fluid building up behind that even a pin prick would hurt like a blade and boy did it, as the needle went deeper he released the local anaesthetic.  Once about an inch in he stopped.  He had already ran the scan over me and marked out a place where the incisions would go in and the tube would come out.  As we were preparing he told me the entire procedure, so I knew what was to come but at each stage he told me again.  The next dose of lignocaine went in, this time the needle having to push through another cavity wall, and yes I felt that initial push, Gary's hand nearly lost a thumb but I breathed through it as best as I could.  There was Dr D, his nurse, a radiologist, the two ladies from PleurX and Gary.  All watching me squirm in pain.  How embarrassing but I had to squirm it hurt like hell.  Stopping and starting a few times until Dr D was satisfied that I was numb enough.  An incision was made where the drain would be inserted an another where the tube would come out about 4 inches above it.  The drain is approx. 6" long with lots of holes in to collect the fluid, the tail then comes out which is what is connected to my drain bottle.  The drain will lay inside the stomach, the tail needs to be tunnelled into the abdomen lining to hold it in place and ensure it doesn't get pulled out.  This was the part that hurts. 

 

Starting with, all Gary could describe as, a knitting needle, a tunnel was started from the first incision to the second, as the tunnel was enlarged a larger needle went in, one after the other, and boy it did hurt.  I don't care what others may think of me but it hurt and I screamed out a couple of times, cried a few times and worst of all my leg kept kicking out with pain, not good when someone is trying to keep a instrument inside a membrane and not go through the tissue.  Never once did Dr D loose his cool.  Once the tunnel was large enough to contain the tail pipe the whole thing was inserted, but this was the tricky part  A covering is over the entire tubing, this has to be peeled, like a banana.  But it is stripped while inside, that did make me yell out.  The tears of pain ran down my face and I kept my head turned to the side so no one could see how much I was crying.  Poor Gary's hand was red, his thumb nearly dropping off. 

 

After the needle had reached though into my abdomen Gary told me that a volcano started erupting from the hole and the fluid was bubbling out.  I asked if I was bleeding because I could feel the dampness, he said it was the fluid, I couldn't believe how hot it was, it burnt my skin.

 

The drain was quickly connected to a bag but it filled so fast it had to be tapped off, they wanted to record the fluid and in the room there was no where to empty the bag.

 

I would mention here that Gary did exceeding well too, he is claustrophobic and to be dressed up like a surgeon made it difficult for him, especially the mouth covering, on top of that he was extremely hot and nearly passing out with the heat, then having to watch some one cut me with a scalpel and cause me pain, he should be given a gold star.  Wendy, Dr D's chief nurse told him that many partners had been wheeled out for passing out while watching, hence she never allowed people in anymore. 

The final stitches, thought they would put one of those caps like an aerial cover round it!

A few tight stitches round the tube itself and to close the original insertion point and I was ready to leave the room.  My throat was dry from the screams I held back inside it and I felt extremely weak but I decided not to tell anyone as I wanted to be back on the ward and maybe have a quick nap. 

 

This procedure isn't an easy one, I know Dr D is famous for putting stents into livers so chemo can still get in for liver cancer etc and he has done many drains but during this one he and the reps from PleurX kept talking about different ways of tunnelling and inserting the thing.  I guess each one is work in progress, finding a different way of putting them in without hurting too much or maybe they review different ways to see who does it the best.

I was pleased it was over but I was sore.  My nerves in my hip hurt during the procedure, whether the pressure from the fluid or his instruments kept catching I didn't know but that caused a lot of grief during the procedure.  My right shoulder hurt each time I breathed, like some one had put a hole in it and was letting freezing cold air go right through my bones.  In fact it still hurts this morning.

 

I said, tongue in cheek to Dr D 'You never visit me on ward' as I was leaving, as each time he has put the drain in I have been left in the hands of the ward.  He smiled, he told me he never got out of radiology!

Relief its over!

 

We got back on the ward, the young auxiliary, Holly, came in to do my obs, she emptied my overfull bag and told me she would be leaving shortly, it was 1.10 and her shift would be over.  Funny I thought, I heard my named nurse tell her to take my obs every 20 minutes, who was then going to look after me.  Gary went off to find me some drinks while my BP was done.  She said shout when the bags fills up and she would empty it.  She returned with a plate of egg sandwiches and a cup of tea and had just left when I had to shout, as I had moved the table my bag had filled already.  I tapped it off as she emptied it again.  Still no nurse!

 

I could feel the pain getting worse so took some morphine and tapped off the bag, it had filled another 200 and I could feel it dragging.  I ate the sandwiches then the nurse appeared, she said I understand you are staying in.  No, I am going around 3 pm I said.  She paled, she now had to admit me and discharge me.  She wasn't happy and disappeared again.  I hadn't tightened the tap properly and noticed the bag was still filling, although slower, another 400 ml was already inside it.  Gary came back, he had seen the ward doctor and asked if he would mind discharging me, Dr D had said once I had drank and had something to eat I would be better at home, no risk of infection and better to get me home while the pain relief was still working inside. 

 

The ladies from PleurX then arrived to explain how to empty the drain and how everything works, we were given a cd pack, 2 drains and as they were chatting the nurse came in then left, then Dr D walked in.  I nearly died, so did the nursing staff on the ward.  The nurse decided to come back and dress my wound and undo the bag while he was there, was she trying to get brownie points, after all we had never really seen her!  She couldn't do it and had to find someone else, so left again.  We chatted and he wished me well.  He told us any competent doctor would be able to remove the drain when it wasn't required.  I said if you think I would remove it to go back through it again if the fluid came back he must be joking.  I will miss not seeing him again, he has a great sense of humour as well as an excellent doctor\interventionalist radiologist. (He is also head of Radiology at James Cook).   Shame he doesn't get to interact more with patients but that's the nature of his job.

 

I still wasn't admitted nor was I really discharged.  The ward doctor popped his head in the room said he would send a letter to my GP and left.  Gary left me to go and bring the car from the far end of the car park to the front doors of the North Entrance and I slowly walked the corridors. 

 

We arrived home to two happy dogs, obviously Bear was kept at arms length and I crawled onto the sofa.  The pain was terrible, my shoulder and side both radiating different types of pain.  I took a good dose of morphine and drank plenty of fluid. 

 

I didn't know what I wanted to eat but voted for Fish finger sandwiches, what has happened to the fish, it didn't taste like cod nor did it look white!  I ate must of them, Bear and Lexi helping me out. 

 

I took tamezapam for bed along with my MST and some paracetamol tablets, thought I would try them for a change.  No more water tablets, maybe I will put back on some flesh!

 

To find more information about how these drains work please visit their website, it may be helpful if you are having the same problems I have had.

 

http://www.carefusion.com/medical-products/interventional-procedures/drainage/pleurx/

So a new dawn begins for me.  I can control the fluid draining, I won't need to be crushed anymore by the fluid and hopefully once treatment starts I won't need to drain.

 

I have a great big pipe sticking out of me so I doubt I will ever be able to wear flattering dresses again, ok I still have a little vanity about me.  I used to be proud of having such a nice figure at my age.  But baggy clothes are in so at least I will be in the fashion, not that I have really bothered with fashion before.

 

I have to hope the pain will subside sooner than later, because it is agony but the pipe has to settle, my body needs to grow around the tube and accept it.  As I went through the pain of this being tunnelled into my flesh I thought about Tom, Tess and Colin, the only 3 people I know with drains and I wonder how they did this in their lung.  I have had plenty of drains in my lung but never ones that are buried there to stay inside.  Was it the same harsh procedure I went through.  I said during it I wish I had taken some diazepam but I was worried about my BP dropping.  Dropping 4.5 litres in less than an hour is dangerous and if my BP was low to start with then I would have needed a cannula and fluid pumped in.  No Thank You.

 

Sorry it has been so long but I have detailed out everything I can think of, I hope no one else needs to go through this but to be honest the fluid is terrible and if this is the only way I can live life without being in crushing pain every 2 weeks then it is the best route.  I don't understand why so many others don't have this option given to them for ascities.

 

My stomach has shrunk but not enough, I don't want to drain today as my wound is too sore, also I need the district nurse to come too.  She is responsible for ordering the drains so I hope she is going to arrive today.  2 drains will not be enough if I need to drain tomorrow, I think I have another 3 litres waiting and that is building each second of the day.  Not only does my body have to fight the alien cancer it will be fighting the silicone that now resides in my body, I will also have some bruising inside so have quite a lot of swelling.

 

 

Prof Fennell

After a really rough day on Monday I didn't think I would make Leicester to see Prof Fennell, I had visions of my body splitting open and my organs being crushed as the fluid inside me got bigger and heavier.  Some how or some one was watching over me, I didn't feel great yesterday morning, too much morphine had me feeling rather sick, but we got to Leicester and waited patiently for Prof Fennell to see me.  At one point in the car I thought we would need to turn around but no we arrived and Liz gave a cheery wave as we walked along the corridor.  She looked different again and as usual I didn't recognise her!

As true to specialists go, he was running around an hour late, Liz was actually working the clinic so we weren't able to sit and chat like the last time I was here but nevertheless it was great to keep catching snippets in between.

Our time came,  in hubby and I went, Prof Fennell is such a quiet spoken doctor but his welcome was warm and I thought filled with sincerity.  He asked what he could do and I explained the situation, how the re-challenging of Alimta had done wonders but now that the meso was back no treatment was offered.  I told them about the ascites, and how the hospital had discharged me without relieving me of the fluid and how I had gone private to ensure I had it done.  I told him the drain was being fitted on Thursday, keeping my fingers crossed this wasn't going to be an issue.

 

I thought the ascities would put Prof Fennell off and he would say no there's nothing he could offer, but he didn't.  It was like ascities didn't exist, but as Liz said later, they see quite a lot of it.  He never said to me Quality over Quantity, or go and put your house in order.  He discussed some chemo therapies and the various trails that are coming to the UK, the gene coding that is now being done at the Royal Marsden to help ensure you get on a trial that suits your cancer.  Then it was right we'll start with this chemo first, you'll know if it isn't working as the fluid will keep building up! 

 

How simple was that?  He is going to write to the oncologist to say start me on Vinorelbine tablet form.  So not even any nasty needles!  I asked what happens if the oncologist won't do it, he said contact Liz and we will do it from here.  "We just don't want to make you travel its crazy when you can have the same thing at home."  Crazy as it sounds but my onco won't give me anything at home!  He even said we can have a go with a further two chemo's but lets try this one first.  Even the fact I had a reaction to the carbo didn't make him blink. 

 

I also found out the true meaning of linage of chemotherapy.  If you have Alimta and Carbo twice you have had only 1st line chemotherapy, if you have had Alimta and Carbo then Venorelbine that is 2nd line chemotherapy.  I am not sure what it is called if you swap carbo for cisplatin I would think that would be a change of line too.  Funny I always thought it was the number of chemo's we had had.  So for me I have only had first line chemotherapy although I have rechallenged it twice.

 

My husband was in a state of shock nearly all the way home.  He can't understand how Prof Fennell could say we'll give this a go until we don't get a result, when we had to fight tooth and nail for chemo last year at Bishop and then this year be refused.  The difference in health care is bigger than he thought.  Even Newcastle aren't as willing to play.  Although if I decided to do a trial, I would prefer to do a trial in Leicester or Royal Marsden or St Barts than Newcastle as they don't do meso specific.  I don't mind trying a trial as long as it is for our cancer and then if I deteriorate I can still have some form of treatment.

 

Liz had also arranged an appointment to speak with their pain management but as we were running late they had left for the day.  We discussed ideas and she said my best option was to find a Pain Consultant.  The length of time I have been on MST and the high quantities I have taken over the years kind of makes me a bit more knowledgeable than most Macmillan nurses.  She mentioned that operation where they slice the nerves to stop pain and also said that changing MST to a different make could also change the way the pain is managed. 

 

I hope that I will be able to get in touch with Dr Nicholson at James Cook tomorrow, I saw him in 04 when first diagnosed but he left.  He is now back so fingers crossed there.

 

We were shattered when we got home, just before 8 pm, fed the dogs and had something to eat ourselves. 

 

I've had a terrible night, my stomach is now heavier than the last time, although it doesn't look so big outwardly, the fluid has found gaps everywhere and even gone sideways etc.  I got on the scales 9.8lb, am the same weight as last time I had 5.2 litres inside.  I was the same weight April 2012 when I went to Leicester, although then it was healthy flesh not 8lbs of fluid.

 

I have thrown up again this morning, bile, I did this before the drain was inserted time before last.  I hope I can last one more day otherwise Gary will be taking me to A and E at James Cook.  I do want to hold back because I am frightened they don't put the drain in without ultra sound.  I know my friends on face book will tell me to go to A&E but holding out one more day is better for me. hopefully, in the long run.  Having the correct drain inside is important together with ensuring it is positioned in the right place.  Plus if I went A&E I would probably have to wait until tomorrow anyway. 

 

Hope has been restored in our household, I remember saying to Prof Fennell it's alright putting a drain in and looking after the symptoms but I need to stop what is causing the symptoms.  He totally agreed, I am still totally in shock. 

 

Chemo is a hard master, it can be terrible to tolerate and even cost you your life but to have it never offered when you are strong or willing to do it is not anyone's decision surely but your own.   We have a light at the end of the tunnel, and not just Plan A but there will be a Plan B and a Plan C.  Over the next couple of days things are being set in motion.  Part of my biopsy will be required for testing, letters written to oncologists and I can breath again, knowing that I may not be looking at arranging my final funeral details before Christmas 2013.

 

I want to say thanks here too, I was overwhelmed at the many messages that I had, although quite a few telling me I should be at A&E (which I would agree), overall the love and support given.  People underestimate the power of the word or the feeling that others supporting you can do for you.  I can't promise I won't moan about the pain of the drain until it settles down but I can promise one thing, I will be looking to a future, one that had been denied me a couple of months ago.

 

Now catch up on my fellow bloggers, Lou is still facing chemo, Mavis has finished her 4th line, Steve is out of hospital, Linda & Steve are planning all kinds of things, Tess has achieved another target and Amanda is supporting her husband but I can tell is worried. 

 

I am going to sit on the sofa and try and catch up with sleep, getting comfortable is the problem but at least I can smile again.

Please give me relief

The sun was out from 12 to 4 yesterday and hubby sat me out in the garden.  I couldn't get comfortable whether I reclined or sat up.  I knew lying down was not going to be ok because the weight of my insides is too heavy now.  My insides ache from all the tablets I am taking, I guess my lining of my gut has been irritated with them as well as the meso.  I can feel a hardness just left of my belly button and under a mole that I have had for years.  Each time the stomach has swelled this has felt solid, like a piece of shrapnel lodged deep inside.

 

I managed a little bit of Sunday Lunch and sat like a Sumo wrestler on the sofa all night watching tv until it was bed time.  Several times I had to keep seeking dry areas of the bedding as my body soaked the bed in sweat, the pillows soaking and offering no comfort for my head.  The pain from the stomach waking me every hour or so.  I took extra morphine in the hope of relief but it didn't work just made my stomach tract ache from more drugs. 

 

My fear is that I wouldn't last long, tomorrow I need to go to Leicester but what if Dr Dean can't insert a drain during the next couple of days, I can't cope.  I could walk into A&E but which hospital and would they fit a permanent good drain if it was A&E or just anything that they could get hold of.  What if I can't make tomorrow?  The way I feel this morning I doubt I could sit in the car to get to work let alone 2 plus hours down the motorway and back

 

Whatever is happening is happening fast, I have heard people say meso can change overnight and to be fair I have witnessed it change in others but not this fast?  I cut the diclofenac back yesterday to just one tablet, thinking these were causing the sweats but nothing changed. 

 

In 2004 I was put on steroids to try and stop the fluid accumulating in my lung, the only thing they did for me was put me in bed for a week with a migraine from hell.  I remember Gary had to change the bed 3 times a day to keep up with the sweat I was pumping out.  Am I going to relive the events of 2004, although these came to an end in the August when I was opened up and the cancer removed.  I can't see anyone going into my stomach and removing the tumours that have somehow managed to slip through the diaphragm and get there.  Or risking opening the right lung to take out a couple.  But it doesn't seem the lungs are what are causing me pain its this bloody stomach.  How didn't I realise it was happening, how could I miss such an important change in my body until it was too late.

 

The sun is shining outside, it feels like an early summer's day but even that hasn't raised a smile to my face.  I have taken another 40 mg of morphine, my insides feel like I have taken strickening poison which is burning a hole through the soft membrane of my lining.  I hope the morphine will kick in shortly and then maybe I can get some sleep in the chair. 

 

When we are ill we want to be seen and sorted straight away yet the hospitals around us are in capable of treating patients this way.  I know if I went to A & E we would sit for a couple of hours, even if I told them I had had a drain before they would probably procrastinate on doing something, by the time a hole was punched through my stomach wall and a drain inserted, or even better, if it was done under ultra sound, it would be too late for me to get out and travel to Leicester.  But on top of that I would have sat in pain for hours again waiting for something to happen.  This isn't just me, it happens to lots of people.  We are in pain, we need treating - yet urgency is out of the window.  That's what scares me about hospitals, there is no urgency in treating the cause of the pain.

 

They say we should think of quality over quantity when thinking about treatment and yes the treatment makes us ill but don't they realise how bad the mesothelioma can make us?  Do they think the cancer just slows our breathing down?  We suffer with pain, crushing pains, hideous growths that come out of drain sites.  Hideous growths that hang from our organs.  Suffering isn't quality, so give treatment at least we have a chance of going down fighting and possibly, just possibly buying time that is full of quality. 

 

I can feel the morphine starting to take effect on the aching stomach, my back on the other hand isn't getting any relief.  I guess the fluid is pulling me apart in some places and squashing me in others.  My ribs are tender to the touch, my skin taunt where it is pulling, where the drains have been inserted hurts, each hole giving off its own pulsating pain.  I should moisturise the skin to stop it splitting but am frightened the fluid is absorbed and makes me even bigger!

 

Who are we supposed to turn to at times like this?  I have an oncologist who knows I have this problem but has he or his nurse checked up on me - no.  I was supposed to see someone after my last admission at Darlington - to date no appointment.  I am relying on my private insurance to get Dr Dean to see me.  Even that ward let me down as no district nurse ever rang, nor did the Macmillan nurse who was supposedly being made contact with on my behalf.

 

Gary and I are alone, I can't expect my GP to keep dropping everything, although I am his responsibility, cancer isn't his speciality.  We are waiting for a phone call to see if Dr Dean has received a referral to insert a drain, I have to pray he can do it this week.  What if its only tomorrow he can do it, then I will have to cancel Prof Fennell again.  How will that make me look in his books, this will be the third change, but I need to see him to get treatment to stop this happening.

 

I am rambling now, my thoughts are everywhere because fear is overtaking me.  I know that I will feel better in an hour when the pains subside into a background reminder that I am ill rather than the full on state I am in.  Another 20 morphine to help bring this about. 

 

Will keep you informed if I get anywhere today, otherwise I am going to try and sit and sleep.  Even having strange sensations running down my legs, never had these before - probably the fluid cutting off nerves.

 

No one should have to go through this.

 

 

 

 

 

Saturday Shopping - Trying to be normal

I was so pleased to go out with the mutts and I think they were pleased to spend some time over the woods with me.  Lexi was, as every time I stopped she would come in and out of my legs.

The weather was warm but I did find it hard going and had to take a puff of my ventolin, only problem was something else went down my throat, probably a little bit of lint and I ended up trying to cough it up.  That took some effort, leaving me a little out of puff for the rest of the walk.

I had decided I was going into Darlington come what may as I need some clothes.  I have only 5 tops that I can wear over leggings, in fact I think I only have 6 pairs of leggings.  So after a small bite of lunch we went off to town.

We parked as close to Marks and; Spencers as we could and I was pleased at the choices of long tops they had, so 2 light sweaters, 1 long shirt and a knee length dress I came away feeling quite pleased with my purchases.  We popped into Mothercare expecting to find maternity wear but nothing.  So along the high street we went, nothing in BandH, nothing in Next, River Island etc.  I had to get one of those false bridges for my engagement ring as all my rings are slipping off my fingers so we called at a jewellers then headed up towards Taylors I had planned on going along Skinnergate to Binns but my stomach was aching.  The weight of it hanging out over the front was becoming unbearable, so we cut down Posthouse Wynd and back to the car.  I was in a lot of pain by the time we reached the car and couldn't decide whether I needed morphine, but I held off and nursed my aching tummy instead.

 

When we got back home the sun was shining in our garden so Gary thought it would be nice to sit up the top and sort the potatoes out he dug up last week.

Cleaning the spuds!

It was nice until I sat out and the grey clouds came but I did help clean a few, at least we have fresh veg that have had no pesticides sprayed on them.


Our own turnips!
 

I am counting the days to Tuesday when I will see Prof Fennell about treatment, I pray to God he will give me something that will not only treat the mesothelioma in my stomach but hold it back from growing.  Then do I get a drain or not?  If it works I won't need one but then what if it doesn't work.  The water tablets I am taking are stripping everything from my body apart from the stomach.  I need to finish taking these asap, the diclofenac are probably causing the night sweats but then again are they, could this be because the cancer has advanced so much.

 

Steve Cook has suffered fluid in his pericardium. I thought back to those years when I used to under go the same problem and thought my heart didn't have any room to beat.  I didn't realise how serious this could get and I guess I was lucky not to die.  Now I am getting those pains back again and I have been told the fluid is once again accumulating around the pericardium.  I have a false heart sac which won't stretch like the pericardium sac does, anything over a litre could cause serious problems.  A friend in the USA told me her hubby also had a drained fitted to release the fluid into the chest cavity, maybe this is something else I will need to think about in the future.

 

I have never been as scared as I am now.  In 08 when I knew thing were bad, sorry near end of life, there was always the option of surgery and thank God I was given that opportunity.  Now I haven't got that fall back, just the hope some form of chemo will buy me more time and hold back this terrible cancer.

 

I am still only 53, I know now that there have been deaths younger than I with this cancer but still 53 isn't old.  My life was cut short at 40 when all of this started and although I have tried to live a full life, work, holiday, husband, dogs - not in any particular order - I have had to go through terrible pain, chemo's, surgery and recoveries.  Even holding it back could only give me 4 months to a year then what?  Miracles are required for not just me but thousands of us who are diagnosed with Mesothelioma.  We need resources and research to find something to turn meso from terminal to chronic.  I could live with chronic, all of us could.

 

This is the website who Dr D Breen belongs too:  http://www.ablationforcancer.co.uk/  I am still debating whether I should send my scan and see if he could rid the right lung of the 3 tumours I know about, maybe killing these would help stop the right from getting worse.  But after our emailing I'm not sure he will be nice, although what's saving ones life got to do with worrying about someone else's attitude.

 

I also read this regarding the pericardium: http://en.wikipedia.org/wiki/Pericardial_window  it didn't make me feel that good I can tell you.

 

I had a phone call yesterday from Chris S.  He was diagnosed with me back in 04 but sometimes I don't know why I talk to him.  I sent him off to see Prof Steele back in Oct 12 because his onco told him he couldn't do anything else.  He is lucky in some respects as his tumour has remained on his aorta and although over the years has grown it hasn't spread.  Over the years I have listened to him but never once has he asked how I am doing.  He tutted me going to the USA for treatment, yet this could have worked for him back in 08.  I mentioned this David Breen to him because his tumour has grown another 1cm - I don't know why I bothered because he then treated me like an imbecile explaining what the aorta is, I know what it is, I had a tumour wrapped round my own in 08, which Dr Abtin cryoablated!  He is lucky, his meso wasn't diagnosed until he was in  his middle 60's, I know that is still too young to die but he has had 20 years extra on living a full life than I have. 

So this morning I am not feeling that good, after having the sweats and my stomach is aching, my chest region is heavy and aching, but I do want to take the dogs out with hubby but feel at the same time I want to waste another day of my precious life being a couch potato.  I need some fight putting back in to my tanks, they are running low at the moment.

Another thing that annoys me is I had a good memory and could read something and retain the information.  If someone posted anything on a trial or I found something by my own research I could remember it.  A lady rang me the other day looking for advice and I couldn't remember a thing to tell her, how bad is that.  I was once reasonably good at being able to help people, now I just tell them to come onto facebook and look for the groups on mesothelioma.  I am finding I am relying on my friends to keep reminding me of treatments.  On this I would mention Graham, because he keeps having to retell me stuff.

As I am writing this, once again the perspiration is starting to build up, my forehead is getting quite clammy again.  I remember having bad sweats back from January 04 until I had surgery in the August when Dr Owens removed all the tumours.  My cancer had changed and remained constant in the January onwards no more growing spurts, just full on growth.  I just hope this isn't what is happening now.  On that pleasant, not, note I will close this blog for the day. 

I hope the sun stays out where you are and that whatever treatment you are having is working, please just add me to your prayers that things will go ok Tuesday.  Just hope my belly isn't too big to get into the passenger seat - it definitely won't fit in the drivers!

 

News on Trial at Cardiff

I had a phone call yesterday from the lady who is heading down to Cardiff for the vaccine next week.  Although her day has been put back while the NHS funding is put in place to pay for the chemotherapy, she will receive the vaccine for nothing from the Researchers.  I do hope this works for her but as she said, she is still getting the same chemotherapy and hopefully the vaccine will ensure the mesothelioma will never come back.  Only around 28 people have had the vaccine so far, maybe this is why they are lifting the ban on living in Wales.  It will only be given to first line sufferers.  Shame they won't give it to us who have gone further as just a vaccine, maybe it could do something for us.  Nothing tried nothing gained is my motto.

 

I had a busy day yesterday, I went into the office on the morning for a couple of hours.  I didn't get much accomplished but I did manage a little bit of work.  I came home to have lunch then Liz was here, we were going to work on the book, but only managed a couple of chapters as my toe lady arrived.  Yes time to dig those big toes out again.  At least now its monthly they don't get so deep and the razor blade doesn't need to go as far into my toe!

 

As Sam was digging away Lorraine arrived, she thought she would pop in on her way from the hair dressers.  Must say it was a nice cut but am used to Lorraine's hair looking bouncy, it had been straightened and flush to her face.  For once I didn't say anything, usually if I don't like her new hair style I put my big foot in. 

 

As Sam was leaving the phone rang to say Gary's car was ready to collect, his electrics had gone haywire!  He had gone out leaving me to have the house with the girls, now I had a panic, the car needed collecting before 5.  As I opened the door to let Sam escape the back way, missing Bear's large drool, I saw my car had come back, Gary was somewhere in the house!  So in the front way and found him in the office.  He moved the car then I said goodbye to Liz and was just about to throw Lorraine out so I could take Gary for his car when he said Liz would drop him off. 

 

Liz and Gary left and Lorraine and I sat down for a chat.  It's been a while since emotions came out and we both broke down in tears.  Lorraine sat with me 9 years ago, keeping me company when Gary was away with work, after my first surgery.  She nearly threw the Macmillan nurse out when she first called.  We laughed about that, trying to raise the sadness we both felt. Why throw the nurse out? she arrived without any knowledge of mesothelioma or the fact I had been diagnosed with it.  She wanted to know the details of my health, how long I was given etc.  Lorraine couldn't believe a nurse would come without any prior knowledge, she asked her to leave. 

 

Gary walked in on us both sniffling and left abruptly, I saw him sitting up the garden on the swing and knew he too was crying.  What an afternoon!

 

I was up must of the night with stomach pain and finally running to the toilet.  I think I peed more during the night than I had during the last two days.  At 3.10 I was back up, sitting on the toilet with the worst stomach pains, I heard Gary ask if I wanted a hot water bottle but I said go back to sleep.  I returned to bed at 4.  I was a little cold after sitting up for so long.  

 

I have just read Steve Cook's blog, he has gone through surgery to insert a drain in his pericardium to release fluid build up.  Last year Prof Murphy was talking about doing this for me, after reading on Steve's blog that it is major surgery I don't know whether I would be able to undergo the procedure.  Although suffering those terrible pains when you have fluid in the pericardium isn't pleasant, especially when the heart feels it doesn't have room to move.  I wish Steve a fast recovery, but please read his blog.

 

Lou has also had a few days away from home, a relaxing time which she needed.  When we are away from our normal life we do manage to put meso to the back of our minds and for that short period of time enjoy living. 

 

Mavis as had her last chemo for 4th line, now we are all waiting with baited breath to see what her scan says.  My fingers and toes are crossed because if she has had a great result I will be pushing for her chemo, if at all possible.

 

The sun is shining and it is quite warm out, I am going to have a shower and do what I haven't done for weeks, go over the fields with hubby and mutts.  It will be lovely to spend some time out in the woods with my little family.  Hopefully this afternoon we will pop into Darlington, I need some long tops which I can wear over leggings and maybe try a pair of maternity trousers on so I have some support for this stomach.  It is getting heavy and making my muscles ache.

 

I wish everyone a good weekend and hope you have a sunny, warm weekend.

A sunny morning

Yesterday morning I woke up soaked with sweat and felt a little out of sorts, the rain was lashing down and the sky was grey so it was a good day to work from home.

 

I only ever updated the blog once or twice a week but during the course of these changes in my body it seems the blog is getting more and more updates than ever before.  Maybe my last journals of  my life that for not other reason I want to share.

 

Joyce came over about 2.15 and I had an aromatherapy massage, I just had my legs and shoulders done, the worry of the last time close in my mind.  I don't want that bile back.  Luckily it hasn't come, not sure whether drinking so much milk is helping.  A glass or two while I watch tv from 8 till 10 then I take a small glass to bed with me.  I do wake up with a very mouth, I think this is due to the water tablets, and milk doesn't quench it but then it has worked so far with the bile.

 

I did have the sweats quite a lot during the day, but I have to say they weren't the dead rabbit smelling ones.  I think my cancer has changed again.  In the early days the cancer growth seemed to run in a pattern, every 12 weeks I would take ill for 23 days, then just before I was diagnosed I was ill all the time.  Surgery and treatment stopped this happening until it started again sometime in 06 when it became every 10 weeks, but the pain would only last a couple of days at most.   Treatment again stopped this.  After surgery in 09 I didn't have any problems until 2011 and they came back, every 10\12 weeks I would be having the adrenalin rush (fight or flight syndrome) but since July when I had 2 together I believe the cancer has changed and gone into a constant growing spurt.  Hence the stomach not staying down, my right lung hurting.   Last year I thought both Lexi and I would die in 2013, maybe its the 13 that made me feel this way.  We hear that saying mind over matter, I just hope my thoughts of not surviving 2013 didn't set the cancer off!

Anyway my massage was wonderful, then I made my oddball lasagne for tea then went back to doing some work for work. 

The sun was shining this morning at 7 but now at 9 we have grey skies again.  In summer when its sunny the sounds outside sound so different to when it shines in autumn and winter.  I wonder why that is?  I am going to go into the office this morning and get some other work done.  I always find I need a different file to what I have when I'm working here, or I've left something at work that I needed.  I sent Gary into work to pick up a load of files for me yesterday and yes I still left something off the list!

 

Linda Reinstein spoke at the Washington Senate yesterday on behalf of mesothelioma victims in the USA, regquesting the ban of asbestos.  Please see Mavis's blog or visit ADAO for the report.  We need the use of this rotten material fully banned in this country.  I bet there are things that still come in which have asbestos.  I heard about drywalling tape having asbestos in it if it is made in China.  So DIY fans beware.

 

My stomach has slightly grown which is becoming a worry.  If Prof Fennell sees me with a 9 month lump out front will he too turn me away?  I have to hope it stays down enough that I don't look near end of life.  Then I have no idea what to do, do I go and get a drain or see if treatment works, that's if he gives me some.

 

I spoke to a person who has tried the herpes virus in Sheffield, yesterday.  Details here:

http://www.cancerresearchuk.org/cancer-help/trials/a-study-looking-hsv1716-treat-mesothelioma

 

He had one dose put into his drain, it seems his own immune system wiped the virus out before it could do anything.  He didn't feel any different and the cancer hasn't done anything different.  Such a shame but that is only one person.  He doesn't talk a lot and getting answers out of him was quite difficult.  He had good results on his first chemo and I found out yesterday he is under the same oncologist I went to in 2011 and am still with.  I also found out that he has never been offered a rechallenge of Alimta\Carbo even though it worked well in 2009 for him.  Makes me wonder if the onco only wants us to go on trials rather than treat with known treatments.  He explained about his chest drain too, how when he takes too much fluid he gets a terrible ache in his chest, like the drain is bashing against his lung.  Pretty much the feeling I had when the drain was in my stomach and bringing nothing out.

 

So that's my news, I am going to go in the office for a couple of hours this am then Liz is coming over to get the rest of book 2 finished, hopefully.  It means another re-read to ensure no more errors then that will be ready to publish.  I can't wait to get this one done, it is a much better book than the first, more to do with the spirit world. 

 

I hope the rest of our community will enjoy the change again and have some sun in their part of the country or world.  Keep brave my meso friends and carers, this cancer takes everything from us.

Rainy Thursday Morning

After dosing myself up yesterday and that pain finally receding to the back of my mind I went to work, I had arranged for the Auditor and I to have a meeting so I had to go regardless.  The sun was shining which lifted my spirits.

 

Before I left for work I spoke to Andrea, her dad has being fighting mesothelioma for, blimey, it must be 6 years now, although his meso is steady he has developed NSCLC which is so unfair.  One killer cancer is bad enough without another.  It was good to hear her voice, I haven't seen her for a few years, I think the ball at Newcastle, was the last time. 

 

As soon as I walked in Mal, my second in command, asked how I was after working so long yesterday.  I told him I had a crap night and it was probably down to lifting and moving files from drawers and shelves.  He had offered to keep getting up and getting me stuff but I can't have that, he would never get his own work done.

 

I didn't accomplish any work, and came home around 1.15 in time for lunch and then Liz, my editor and chief book reader, landed.  We worked through the second book, correcting my mistakes, have only the last 6 chapters left, so hopefully it may make Kindle and the printers by Xmas.

 

I didn't get any further information from Dr Breen but a friend in the meso circle sent me the website of his facility, why couldn't he just do that originally?

 

http://www.ablationforcancer.co.uk/cryoablation.html  This says what they can do, and yes they do treat tumours on the chest wall and in the lung.  How come I have never found it before?  The amount of searches I have done for ablation and never once has this shown up!  I am going to fill out the submission form and see what happens.

 

A couple of days ago I received a request to ask for a link to another help site - I emailed back to ask if they were attached to lawyers, nothing has come back saying they are but for any information you have to fill out a form.  This leads me to believe they sell on names to lawyers in the states, so please be careful who you give your name to.  The site is called mesotheliomagroup.com.

 

I also received a sad email this morning, Chrissi has taken her wings.  Over the years Bud and Chrissi have sent emails just to say how she is doing.  She had major surgery a couple of years ago but the meso came back.  She passed in her sleep and thankfully without lots of tubes and wires in her.  She put up a brave fight but another life was needlessly ended due to asbestos.

 

I again have woken up with that rotten pain in the chest, I soaked the bed last night with sweat, even my pillow was wet!  At least my dreams didn't wake me with pain last night and I slept reasonably well, although I can't understand why being so wet didn't wake me up, it must have been a residue of the morphine that kept me knocked out.

 

I can't decide whether to go to work or stay in the warmth of my office at home.  The weather outside looks cold and wet, I think we will be in for a long winter.  I have also asked Joyce to come over this afternoon and maybe massage my legs - this time I will stay away from my stomach, I don't want any bile reappearing in my throat.

 

I have been drinking milk before I go to bed and having a sip during the night when I wake up to visit the loo.  I think this is doing the trick - but I am terrified of it coming back like it did before.

 

On another good note Bear's head has finally started to get better, it has taken some time to heal which was helped by him trying to scratch it as much as possible and rip the scabs off that kept forming.  But you can't watch a dog 24\7.  He has been very much by Gary's side, giving him face butts.  Bear doesn't lick, his affection is putting his snout into your face.  As Gary was digging all the potatoes up Bear kept nudging him and butting his face. 

 

I live to fight another day, I am hoping this stomach of mine will remain at this level at least until I have seen Prof Fennell next Tuesday.  Who knows by the next week I may be on treatment and these cancer pains will recede as the chemo takes effect, I just hope I can cope with the treatment.  Having chemotherapy is never a walk in the park.

 

Till the next blog.......

 

 

 

 

Pain in the Pericardium

I am dropping to bits a wee bit faster than I should be.  Have had a terrible night's sleep, the pain in my centre chest disturbing my sleep, even coming to me in my dreams.  During the course of the night I have taken several morphine tablets to relieve it but to no avail.  Guess the mesothelioma around the pericardium is annoyed or irritated, hence giving me pain.  I know our Australian Steve is having the same trouble but I don't think we carry out the same type of routine here in the UK, anyway I don't want to spend a couple of days in hospital.  It usually clears on its own - rather it used to clear on its own!

 

I managed to get into work yesterday and enjoyed it, I didn't think about meso and what it was doing inside my body.  In fact just now I have realised why my chest is so poorly, I was lifting files from my drawers to my desk as I went through work etc.  Maybe I have just stretched a bit of cancer!!  Seriously though, it was quite nice to be at work and get on with something other than me.

 

I had a note from another carer telling me about a Dr David Breen (stomach specialist) who does cryo-ablation in the UK, operating out of Spires Southampton.  So I emailed the doctor yesterday.  He said he didn't do small tumours in the stomach area only on large organs.  So being me I emailed him back and mentioned Prof Suh and Dr Abtin and the fact that Dr Abtin was willing to come and demonstrate the use of cryo on lungs.  This was the good doctors reply,  I have emailed again apologising if he thought I was undermining him.

Dear Mrs Egerton

I need to be clear.…we have one of the largest cryoablation practices in the world and second only by volume to the Mayo Clinic in Rochester.

We tend to use microwave for lung tumours and Cryoablation for focally chest wall-adherent disease.With all due respect I almost certainly have considerably more experience in this arena than Dr Abtin. Our aim is always to do the right thing by the patient and deploy therapies appropriately.(My anaesthetist partner- Dr McGill - is copied in above.)

My understanding is that you have peritoneal-based disease in the abdomen which will likely not be suitable for ablation.

I do hope he will come back to me, maybe he could zap the 3 solid tumours in my right lung.  That would be a blessing as it seems its the right now that has gone crazy.  If chemo can't kill them this will.

 

My tummy has expanded slightly but I am praying the tablets will start doing their bit and keep it slow growth.  I feel like a chemist has moved into our kitchen with all the different tablets etc.

 

I also heard from a lady last night who is newly diagnosed.  She has contacted Jason Lester at Cardiff and may be allowed to go onto the trial.  This is the vaccine that works with Alimta and cisplatin but for first time use only.  She rang me out of the blue and we spent some 30 minutes talking about treatments etc.  Again, although newly diagnosed her oncologist hasn't offered her much advise, more so it took 9 months to diagnose.  She has spent the last months researching as much as possible and I truly hope that the trial in Cardiff can work and this vaccine stops are reoccurrence of the meso.  If it works on first users, who knows there could away it targets the cells when they return and turns nasty Mr Meso to mush.  Always hope.  Needless to say she is from the North East and for them to take so long to diagnose, even after a VAT is terrible.  She said she thought it maybe mesothelioma but was ignored. 

 

Well our niece and her boyfriend came over last night to stay, they were heading for the airport early hours, 2.30am from ours, it would have been 1.00 from their home town. Hubby took them up to Newcastle Airport and we will both pick them up in a couple of weeks.  The fear over Egypt and the problems out there has had the two of them on edge but Thomas Cook would not let them change destinations and at one point last week I think they were going to just not show up.  Anyway after checking the news constantly they have gone.  I do envy them starting out on life, even more so the fact they are going to the hot sunshine rather than the cold weather we are having.  Although this morning the sky is blue.

 

I had planned on going in this morning again, but I need this pain to subside.  It is nearly 9 am and I have so much work to do, my auditors are in this week checking my trial balances so we can finish some accounts.  Although still have plenty more to do!  Have taken another 40 mg of morphine, it has taken the edge off, so far since 1 am I have taken 100 extra, although the other 60 was 20 at a time. 

 

What I hate is if one thing improves another goes wrong with this cancer.  The fight is back but unfortunately the pain is too.  I did read once that if chemo doesn't work on old cancer it could escalate its growth.  My right lung was old cancer that never moved until recently, maybe the chemo just ignited it - but because oncologists don't really follow our progress I doubt this would be recorded or ever reviewed.

 

On that note its time to end.  May not be good reading for you but it's what is going on.  I would love to open my blog at the moment and write something great like I bounced out of bed feeling the sun on my face and ran down the stairs, dance in my step!  Boy do I wish it was like that.

 

To my fellow fighters and carers - have a good day - smile at yourself just once to ease the tension you could be feeling.

 

 

 

Visit to GP

On Saturday night I took a muscle relaxant as my body ached.  On Sunday I didn't take my low dose of water tablets are they aren't supposed to be used with the other tablet.  I even wore a pair of jeans that were quite baggy around legs and roomy in the waist.  I felt a lot better with myself as we went to bed.  Around 4 am I woke with discomfort, my sides ached badly and pains in my chest. I got up at 8 and noticed how large my tummy looked.  After my morning coffee and a quick look on face book I showered and put the jeans on from the day before.  They just managed to fasten, tears filled my eyes and yes I sobbed in hubby's arms.  I try not to cry because I have to be strong, During the last 9 years up until recently I could count on one hand how many times I have broken down, these last two months I have cried a lot.  By doing this I am allowing the meso into my mental psyche and also it hurts Gary to see me like this.  He went to shower after me and I noticed how long the shower ran, I think he did a bit of sobbing in private. 

I had set my mind on going in the office but I rang the doctors and managed to get an emergency appointment, the receptionist put me in with my own Dr Jose.  Gary drove me to work as he was coming to the docs with me.  My colleagues were over the moon to see me after so many weeks.  I was amazed at how fast I managed to go through the file of post and sort it out, at 11.00 I left to go to the docs.  Our wait wasn't as long as I expected and we went in.  Winny told me that my regular radiologist had read the scan, he hadn't done a full report as yet, just a quick email.  It saidI had  deteriorated a lot since May, especially the right lung.  I cried again, what is wrong with me!

I told him what I had done and although I don't think the tablets work I can't be sure not taking them has helped the fluid.  He told me to lift the tablets again and also start the dicolfenic.  I hadn't started these because if you have had heart failure you can't take them.  He told me for the short time I need them it wouldn't make any difference.  I asked him to refer me to Dr Dean again but this time to fit the drain.  I don't want to be dying with a heavy stomach sitting on top of me.  He told me I won't be dying anytime soon and all I need is some one willing to treat with chemo.  He also mentioned Dr Abtin and said it was a shame he couldn't come here.  My right lung tumours would certainly get killed.  I think the tumour inside the lung is the one to worry about though.  My eyes welled up so I got up to leave, he gave me a hug and told me not to worry, see Prof Fennell first and see what happens.

I came home first just in time to remember The British Lung Foundation had arranged for me to do an interview with That's Life magazine, to help promote their new Take 5 awareness program.  Emma from the mag rang at 12.30, I felt sorry for the lady as trying to follow my history is quite hard.  The call lasted some 90 minutes, she will write it up then ring me back with her story then if I agree it will go to the editor to be published.  Gary isn't happy that I did this because of the way they sensationalise stories.  The good thing is, if it is done properly meso will reach a wide range of readers.  Also the payment will go to Mkmrf.  

I seemed to pull myself together and went back to work.  I threw myself into it, before I knew it everyone had gone apart from me and my brothers.  I had intended to talk about the future, we would start then the phone would ring and we would lose our thread, in the end it was decided to talk after seeing the Prof.  If things are bad then I will have to relinquish my job for the security of the company.  If I have chemo then I can work at home on the days I am ill but overall I need to decide if I will work set days in the office.  This year I have been so unreliable, which in my position isn't good.

Today has been hard on both hubby and I.  Gary said when he was cutting the grass Bear stayed by his side, then when he decided to have some play time with them Bear kept pushing his nose into Gary's face.  I think he knew Gary was troubled.

Tomorrow is another day I hope the tablets kick in.  I find it strange that I really don't want to visit the toilet much as it is, just hope they start working, at least I can tell my the jeans I tried on.

I'm shattered so ending this post and catch up with some recorded program's, although I think I may be asleep in an hour.