Thankfully No Bile!

Sitting on the sofa watching Tv most of yesterday with my feet up is not the way I like to spend my day but it was a means to an end, rest this poor body that has been through hell and back just so that I can carry on living.  By bedtime by ribs and pelvis bones ached, I thought I had been pushed into every rope on a boxing ring by Mike Tyson.  I decided the best thing to do was take a muscle relaxant so my body would feel better.  This also allowed me a sleep in, I woke at 6 am and took a metrocloprimde then back to sleep.  I had no bile, I was so happy that when I came down and met Gary in the office my eyes were sparkling, his face lit up.

I haven't done a lot today, my highlight has been talking to my Australian meso warrior Lou, the thing I love about face book is we can chat if we are both on line.  Her chemo regime is hard but when your body is still under 65 cells don't like chemo much.  I have noticed that the younger you are the more your body struggles on chemo.  I remember a doctor once telling me that cancer has to be more aggressive in younger people to break down the bodies defences.  As we get older our cells change.  My mother in law has had carbo, so side effects apart from a sore mouth, good that she hasn't gone through the rough stuff.  I am keeping fingers crossed that it has done its job though.

My tummy is starting to settle, although I think some fluid is still extra down there I am happy, I expected today to be worse than yesterday but today I am fine.  I have even managed a full prawn wrap!

I think my eldest brother is worrying I am heading towards end of life, I can understand this, but it makes it difficult for him as he can't talk to me.  I know I have thought about my job a lot and wonder what will happen but I can still work and over these last 9 years I have managed to do everything I have needed to do.  Even run the housing projects.  I would like to make certain hours but if I want to go to work I've had the choice, setting up set days may not suit me but it would be better for the company.  I guess it's time we all sat down and talked openly.

Hubby has gone through his adrenalin and is now in need of deep sleep, his afternoon siesta is calling him.  I should be doing more today but I truly believe all this lazing around has made me lazy.

I have recently had a few new people start reading the blog.  These are people who bought my book and have started finding out about Meso.  It's amazing how by doing something like writing can spread awareness about this crap ordeal.

I am hoping that this is the start of me getting better and over the hurdle that has been thrown at me.  I haven't heard from the district nurse yet, good job I knew when to take the other drainage bag off and replace with sterile dressing.  After all I do have a small hole in my side.

I am due to see Prof Murphy tonight regarding my heart.  Hopefully this sudden fluid has not affected my heart any further.  Heart failure is something you don't always realise happens.  I think I had a couple in 09, the fluid gave one away but the spasms I didn't realise were others.

The loss of two warriors this week has brought the community another knock but news that others have had no reoccurrence brings much needed lifts.  Also news of an orphan drug coming to the Uk and other countries may just be a new answer for treatment.  Prof Fennell is on the committee.  Other great news from Graham Brown, he had a full EPP in 2003, has been asked to join a research team.  He had a fever after surgery and has found a few that had the same have had no reoccurrence.  Is this a breakthrough too?  I will be watching his progress.

Thanks everyone  for the kind words of support and the vibes you have sent my way, thoughts are energy - no wonder I am on the up.

Draining and Life

Yesterday was the day I had looked forward to for weeks, the relief of having my stomach drained and feeling human.  I didn't wake up feeling human and I was also petrified that there wasn't a bed for me on ward 14 at James Cook.

 

At 8.30 we got our answer, in the shower and off we went.  I was there early as they needed another blood test and then I was finally taken down to radiotherapy. 

 

Dr Dean once again started with little needle then bigger and boy did a few hurt as they proceeded to push their way through my abdomen to get to the fluid.  I really don't want to go through this again as it isn't pleasant.  We talked about the drains they leave in place but he was quite happy to drain again, maybe having the same thoughts that my fluid was caused by the flight.

 

The pigtail drain went in and out he started syringing one after the other of straw coloured liquid.  He hadn't read the scan (and I thought private was efficient!) and even if he does I get the feeling I don't get his reported results.

 

After an hour of syringing it was time to let the drain do its work so I was attached with a little bag for the fluid to accumulate in.  Back on to the ward and hubby went home. Dogs to look after etc.

 

The nurse who looked after my bay was a wonderful lady called Jayne, she was interested in ensuring her patients had the best treatment and were truly cared for.  Having retired she was back working part time and I think was probably what we would call the committed nurse.

 

The drain was uncomfortable at times, so I was encouraged to take morphine for breakthrough, something I wouldn't normally do but I wanted to ensure as much fluid came out as possible.  I found I had a good hour's sleep too.  My blood pressure was low, at one point down to 88 over 48 and I had to drink 2 litres of fluid straight off.

 

The drain was filling reasonably well and although my stomach hadn't gone down to looking like a normal stomach the fluid was moving out.  I told hubby I would probably be staying the night as the fluid was still coming when he rang to find out if I needed anything.

 

At 7.30 the drain seemed to stop, so I went for a walk and checked again, nothing further had come out.  At 8.15 the attempted drain removal started.  The pigtail again got tangled.  God I screamed  when they tried to rip it back out, it should slide out gently but this one didn't uncoil.  Jayne said she wasn't happy getting it out and off she went to find a doctor.  The pain just from moving it and it being coiled against my insides was painful.  Not something I wish to every experience again!  A doctor came and after more morphine, and some lidocaine was injected she tried, she saw that the wire and snagged and after trying to untangle it she decided it needed cutting.  God knows how she saw the wire to cut but I'm pleased she did.  That's 3 to date that haven't come out as they should.  I wonder if there are a faulty batch?

 

I had so many well wishes from the meso community I could have cried.  This morning I feel sore, both at the wound site and across the other side of my tummy.  I am still a very peculiar shape but thankfully in one piece.  I don't think I will be doing anything today, I was told I will crash either today or tomorrow due to lack of protein.  Hubby is going to go shopping today and has insisted I get Chris up to watch over me.  I feel like a child that needs babysitting!  I can understand his concern, 5.3 litres is a lot of fluid to have removed.

 

I also received some very sad news yesterday, Barry Gore took his wings and is now free of pain.  It is sad because his wife is now alone and he will be missed by his family greatly.  It is also sad that he had to have this cancer in the first place.  My thoughts are with them all.

 

Have a good day if possible, if on treatment I pray it goes ok.  

Ct Scan Done

I didn't get any relief from my bloated stomach on Friday but to ensure they can see what is going on inside my insides, I had a Scan done at Woodlands last night.

Today is hubby's birthday and I feel terrible that we won't be celebrating it.  Last year we were on a cruise, although that brought a surprising opening up from hubby and a lot of tears.  He said today I am so happy that we have managed another birthday together - something I didn't feel was possible last year.  

When he took the dogs out for a walk this morning I dared load the Ct scan on the computer and have a look.  I can't read them like an expert but due to Dr Abtin explaining them many years ago I have a good idea what to look for.  I can see a tumour in the left that I can't remember being there before but overall the lungs look no different, growth seems slow, extremely slow.  I can't read the abdomen apart from knowing the light grey is fluid and boy do I have a lot.  This quick glance lifted me completely and I feel mentally stronger as I am sure things aren't that bad.  

Another meso sufferer is having similar problems with treatments.  Having had only 2 doses of alimta without results the oncologist has told them either alimta or nothing.  Please explain to me if it hasn't worked why put some one through the dreadful side effects for nothing instead of changing treatments.  We know there are two other chemo's out there available but seems these aren't an option.

I am noticing my memory is slipping again.  I was giving another sufferer names of specialists but I even forgot I had been to see Paul Taylor at Manchester.  Mind he wasn't that helpful at the time but he is still another option for some one seeking a second opinion.  

Mavis is going to bring the differences up about how treatments are and aren't offered around the country, at her next Lung meeting.  Considering there is a standard practise for treating meso no one area seems to adhere to it.  What is the point in wasting a load of money researching and publishing this report for it to be collecting dust on a specialists shelf.  

I wish it was Tuesday tomorrow as I am really struggling again with fat belly syndrome - my fear of it being drained is a few bad days of throwing the accumulated bile.  I will get back on top.

I have received info from the circle on drains that are fitted, I had hoped I don't need to do this as my body hates alien things inside of me, but maybe I will need this if I don't actually need chemo yet.

When I get back on the computer I will post a letter a long term meso fighter has received from the Canadian Government.  

So as Saturday will be another day on the sofa for me I hope the rest of you are making the most of it.

Home - Safe and ballooned

I have woken this morning from sleeping in my own softish bed and my back feels like new, I was expecting to be crippled this morning but, touch wood, all I can feel is bile sitting somewhere in my chest.  The stomach has stayed as yesterday, no larger but no smaller.

 

After having to take morphine for chest pain yesterday before we actually flew I was dreading today but maybe things are looking up.  The only other things I am suffering are my eye's are out of focus, this always seems to happen now after I return from holidays, my mouth is extremely dry and I have a headache.  The headache is probably due to the extra morphine taken yesterday and last night at bedtime.  I did check my weight on the scales, I have gained nearly 8 lbs, and I know it isn't down to food, that's quite a lot in one week.

 

I came home to a message from Dr Vish's secretary, he has arranged to see me at 5.40 on Thursday night, this is to discuss the procedure they plan to carry out, which will take place at James Cook Hospital.  I only hope it's sooner rather than later. 

 

The mental torture I put myself through about flying didn't happen, that is a relief in itself.  I said to hubby on the plane coming back, I feel so good now, maybe we could have stayed on board.  He gave me one of those looks and reminded me I had taken 40 mg of morphine because I was doubled over with pain at 11 am that morning.  I couldn't remember!  I must admit I did keep nodding off on the plane so maybe my memory was wiped.  I could see the relief of his face as we were getting closer to home and I was ok.  Although he doesn't go through physical pain, his mental torture must be terrible.  How do they cope when they see us suffering and now there is nothing they can do but hug us or tell us everything will be fine?

 

I hope I have brought some nice weather home, looking out we have that mist we had back in 1975 and 1976 when we had glorious long summers ... that would be nice feeling the warmth still on my bones while waiting to see what is going to happen.

 

Today I am going to rest up, once over the packing would have been done as soon as I came through the front door, if it stays in the cases another day I don't care.  I think both of us need to relax and get over the stress of the last two days.

 

I will start my letter writing and battle tomorrow.  I am going to write to the Trust and explain that I am not ready for the scrap heap.  Maybe I may even have to revaluate Dr Vish if he also thinks that, but I won't know that until after Thursday's meeting.

 

In all honesty we don't know whether the meso is in the stomach via the lymph nodes or by contact with my false diaphragm, or whether it is caused by something else.  The bile can do damage, especially the amount I have floating around in the morning.  At Darlington Memorial they did take away fluid to be sampled yet no results have been sent to the doctors or as I keep wittering on, no outpatient appointment has been sent to discuss it.

 

I have received many words of support from the mesothelioma network of warriors and I really appreciate their support and advice.  No one truly knows what this disease is capable of doing before it actually robs us of our last breath, I keep being told I am in uncharted waters - yet doctors don't want to record what happens.  If this is the case then how will any medical details ever be known and help others in this terrible predicament.

 

On that note I am ending here for now. 

Day seven - Ibiza. Time to leave

Waking up yesterday in terrible pain wasn't the best thing to do on holiday.  My back, kidneys, chest, heart and sides ached and hurt.  It was difficult trying to eat my slice of toast, no room down the gullet.

I know each morning has been bad but this was worse.  I was still tired but lying down was so painful I had no choice but to get up.  After 2 hours of no improvement I tried organising getting my stomach drained.  We were scheduled to arrive back Friday, so after emailing and telephoning various individuals I got nowhere.  My mind was racing, what if my stomach got to the point of where I felt the skin was splitting open again, I certainly couldn't cope.  I don't want to go to A&E if possible because they didn't use ultra scan to guide the drain, now that I know the liver is forced from its normal position I am scared they would catch it.  Darlington must be the only place they don't use guided insertion.

Seeing my stress and the fact that once again I am beating at closed doors hubby has said he is going to be assertive from now on and help get things done.  That said we decided to cut the cruise short, so after a lot of calls to our agent we leave today.  I feel guilty doing this but then I didn't expect my body to balloon like this.

I did ask if the medical centre had a ultra scan and could drain my body at guest services, she didn't know and rang the nurse.  Hubby said we don't want to ask them, they will put you on mainland in hospital, which neither of us want.

We went for lunch, the food at lunch to me is the best meal of the day, but I couldn't eat more than a couple of mouthfuls.

We were anchored off shore and believe it or not but it was quite windy at one point, but we set ourselves up on the deck and spent the remainder of the day sunbathing and napping.  I think we came in doors about 7 as the sun was heading down.

Packing didn't take too long, another painkiller then we ordered dinner.  I still only managed a couple of mouthfuls, even hubby with his appetite couldn't eat much.

A movie then bed.  This morning we have pulled into the port I feel so much better than yesterday and am doubting we made the right decision, but then relief at knowing you could get sorted in a day or so can make all the difference.  The doubt won't last long, I have just looked at the rib cage, it is trying to expand, my extra morphine helped during the night.

This is the first time we have ever booked holidays so far in advance, but for cruisers you need to.  Hubby is on about next years but as much as I would like to think we can plan that far, looking at this was a big mistake.  I have enjoyed the sun, we don't get weather like this often in the North East of England.  I have often said if we did I would never leave the garden.  Wish I could get hubby to move somewhere  hot!

We were discussing causes yesterday, my bile has subsided again and I wonder if this toxic chemical that lives in our body could be the cause of irritation.  I know overall the stomach is the worst problem to have but it has been nice not having bile sit at the bottom of my throat and making a burning hole in my chest and stomach.

We have a couple of hours to kill before we leave the plane, the only clothes that will fit are now a pair of leggings, so I doubt I will eventure out into the sun for those last minute rays.

Lou should be through her first run of chemo now, she has had a tough time with it, Mavis has done well with hers.  We are all eagerly waiting the outcome of her 4th line, praying other oncologists will heed this path for others.

See you back in the uk

Day five - at sea, Day six - Menorca, Spain

Yesterday was the ships crossing from France to Spain, it was a little wild but the hot sunshine and the speed of the ship didn't stop us sunbathing on our deck for most of the day.

I thought I was getting somewhere with losing water with the increase in dosage, I found myself visiting the toilet quite often and by 6 pm my extended stomach was softer.  I was thrilled and hoped this morning I would wake up feeling better.

I woke up feeling worse, my stomach is again rock hard and with reading about the drop in air pressure when flying my fears for flying home are high.  I don't think my skin can take much more growth.  I woke with an aching back, around my kidneys, my chest is heavy with what feels like a restriction right around.  Breathing deep is painful.  I said to hubby maybe we should try and fly home from Ibiza tomorrow but that would be a longer flight.  Also really what would coming home early do, I don't want to go to Darlington Memorial if possible because they didn't do the job right last time.

I have to say though yesterday was lovely and relaxing for us both.  But that morning didn't get off to a good start either.  We laid out on deck, hubby mesmerised by the waves and me by reading a book. We did go down to the restaurant for lunch, they were doing an open Market day.  So many different choices of food.  I think I eat the most a lunch time on the cruises as I prefer the buffet style choices.

We sat out until 6.30, the sun was still hot but it takes me an hour at least to have a shower and get ready.  For all I passed so much water the dress I went to wear refused to fit me.  I pulled out a pair of cropped trousers that I have worn already on this trip and they were a lot tighter, this brought me down in mood.

I was up at 8 as I ordered toast to ensure I have something on my stomach to take the water tablets, once I struggled through eating half a slice I had to go back and lie down.  I don't know whether we will get off the boat today, we need to take the tender into port, all that bouncing may be a bad idea.  It's 10.30 and I have no energy to do anything.  We came away for sun so I guess what does it matter if we stay on board.  I do feel guilty for hubby though, he needs a break away from Mesothelioma, a break from me being ill - hell I need a break from me being ill.

We have just agreed we will be staying on board, so a day of rest again on the deck watching watching the scenery go by as the boat gently keeps turning on the waves.

I guess one good thing about us not befriending anyone this trip is that we wouldn't be letting another couple down by not meeting them if we had made arrangements.

I had better make a move, if nothing else I can sit out in the sun and hopefully pick up again.