Each day is different

After the shock news of Friday and the news of the new patch crippling my sternum we stayed up late, the hope that I would sleep right through.  Unfortunately it didn't work, this dry mouth seems to set off the first problem.  Reaching over to dab my mouth with some dampness, it trickles down into maybe what is bile sitting at the back of my throat.

An unbelievable pain reached from my left rib right across to my right hip, I felt like I had been out of my body and dropped back in, but totally unaligned.  I had kept part way on my back and part on my left.  I keep remembering we should sleep good lung up but I never do this, never being able to keep on my right side since surgery.  I couldn't breath, nothing would move, my lungs were stuck solid.  Gary got me to stand, painful to say the least.  I had to get up, I could not go back to bed, I hobbled to the landing only to find I had nothing left, no air in my chest.  Gary went for the ventolin but I couldn't suck the mist in, sheer panic overtook, my heart speeded I just wanted to die at that very moment, in fact I thought I was dying at that very moment.  We tried oxgyen but it was overwhelming.  We were stood staring at each other, both of us not knowing what to do, somehow I got through it.  I managed to get downstairs but the sheer effort was terrible.  I got onto the sofa but the restriction was the worst I have ever suffered.  I tried draining, but only 360 came out, no change. Gary sent a text to our GP, then to help settle me I took a diazapam.  I can't remember drifting off but I woke some hours later, the morphine I had taken together with the muscle relaxer worked, my ribs had relaxed but boy was I whoozy.

My GP had rang and told Gary what we had done was right, the tablet was the only solution.  My mouth is also full of Thrush, Gary rang Christine who called at a chemist and brought some Daktarin up, hopefully this will take away the burning red tongue and cobweb feelings I have in my mouth.

It was 1 pm before I could even keep my eyes open properly but by then we had been up since silly hours.  Gary was dead on his feet, all adrenalin wiped from his body.  I managed to finally shower, although I sat on the stool in the shower.

Gary took the dogs for a quick jaunt then went to lie down in the black and white room, a couple of hours nap would do him good.  Christine then arrived at 4.30 to sit with me until he woke up, which by then I needed someone to help walk me to the loo, the call of nature was close.  At 6.00 he emerged still half asleep, looking dead and with a blazing headache.  I don't know how much longer he can carry on caring for me so vigilantly without whacking himself.

The fear of another day like today was looking at me in the face, there is no way I can keep getting through these episodes, they not only take my energy but scare me beyond any words I could write.  Is this the normal for what we are to face.  I have lived with pain for that long, but this is different.  I keep trying to see if others have posted comments about how they cope, but nothing is there.  I believe men just don't complain, but how do they hide this terrible way of life we are enduring?

I am scared, part of me just wants to die now so I don't have to suffer any more of the brutal pains this cancer puts on us, but then I have to hope that if the can stop or shrink this obstruction my life will improve 100%, but everything is done so slow here.  If I was in the States, say, I could have already had radiotherapy, instead I have to wait until after a meeting and then mess around for dates.  Not fast enough when the lying down is what brings this on.

I took additional morphine before bed as the centre pain started to ache along with my right back, thn a tamazepam to help being on sleep.  Bear woke us at .2 barking but we both got back to sleep.  4.30 or maybe a touch later I needed to dampen my dry mouth, movmnt, why do we move?  I was in pain plus nature decided to call.  I couldn't then lie down.  The bedroom was freezing to Gary but again I was hot, even though my feet are the colour of purples.  I told him to get into bed and I sat upright with my head resting on the headboard.  We held hands and talked.  Next thing I know Bear is running round the bedroom, it's 9 and we made a good nights sleep.  I don't feel like a twisted knot, some discomfort but overall near normal. Today I am going to try and exercise, get my legs moving etc.

I am still sat in pj's and told Gary to walk the dogs.  I hope, no I am willing today to be a good day and that sleeping better has helped us both.  If it wasn't for this one tumour my life would be better, I have to pray that radiotherapy is on the cards and will do its job.

If anyone is experiencing something similar to me, please let me know, I can't be the only one that has this much pain and problems with breathing, more importantly to me, how do they get through it?

I have compiled this again on the IPad so apologies for errors, it isn't the best tool on the market to do blogs with.

I thank many of you for the words of support received, I hope that what I do detail you will never experience but if you are unlucky to do so maybe these accounts of what I have been through may help you.

I made Christmas 2013

Last Christmas when I was wrapping the tree decorations up I was sure that it would be the last time I ever touched these little balls of memories that Gary and Imhad collected together over our years together.

This feeling of doom followed me all year and the in September when my body hit rock bottom I was sure I would not be spending Christmas with the man I love, in the home we share.

To say Gary and my relationship has changed is an understatement, he has gone from husband to full time carer in a matter of weeks.  Hard to believe that 6 weeks ago I would never dream I would need to be pushed around in a wheelchair, now the wheelchair is used in the house to ferry me from living room to toilet and back.  

Today was the day of dread, the scan results from just before Christmas.  I can see and feel the deterioration of my body, is it the chemo whacking me or the cancer taking hold.  The belief is both, in order to see which is what chemo has been deferred for 2 weeks.  Because I am having Vinerolbine  twice in a 21 day cycle it is taking the stuffing out of me, on top of that I am draining away a lot of bodily fluids that should be used to feed me, instead they are protecting organs.  

The left has remained stable, the only good piece of news, the growth of various other sites is slight, another good piece, would be better if said no growth, no size was mentioned.  Under the sternum and by the bottom of the right rib these new patches aren't playing nice at all, more not reacting to the chemo.  My oncologist is having a meeting on Wednesday and will review my scan with a radiologolist in the hope that they will be able to alleviate some of the pain in my centre chest.  If I bend forward I cut all my oxygen off to my lungs and can't breath, nothing I can do stops the fear taking over.

This morning at 4 am I woke with a really dry mouth, I reached out and used one of those mouth swabs just to wet my mouth, big mistake.  Movement set off that pain, I tried to lie down and go back to sleep without disturbing Gary but then being awake made me need a call of nature.  I pushed the bedding back and tried to get up but the constriction was like a vice.  I called Gary, he was up and by my side of the bed ina second.  He helped me up but the feeling was awful, I hobbled to the loo and then we hobbled back.  I tried to get back into bed and lie down but this was becoming Impossible, the pain was more acute and the breathing laboured, I could feel panic rising.  I tried to get a puff of ventolin to open my airways but didn't have the capacity to breathe in the vapour, Gary held the oxygen mask near my face but it was too strong and overcame me.  This probably lasted no more than 3 or 4 minutes but felt like a life time.  Finally, with the breathing under control I knew I could never lie back down, my whole torso was tight and rigid.  

We spent the rest of the night in the living room, me sitting upright on the sofa.  I don't think it helps having this bile problem either, why did I do my gall bladder!  

Nevertheless, it did work out well as we left the house in good time to go to hospital.

This season always reminds us the most of those we have lost, our parents, friends and other family members.  They are never forgotten but so badly missed so among the rejoicing of still being here I also felt bad for those who have lost their soulmates, especially just before.  Lisa and Gail were up there, both losing their soulmates so close to this time.  Helen and Debbie, the family missing them for their first year.  So many friends we have said goodbye too, the list goes on and on.

I fear this may now be my last Christmas, God willing it won't be, but I promise as I travel what could be the end of my journey I will always be honest to myself on this blog.

I am frightened, more so of the pains that come during the night than what I face during the day.  I have to start working my way up this well wall and reach the top in reaonable health so I can still challenge this terrible cancer.  I believe it's the chemo that is bringing about my weakness and I pray that over the next few weeks I can improve on my current situation and then restart treatment.  Without treatment how do we control the symptoms.

My thoughts go out to those who are also fighting this, my prayers are with you all.

Lets see 2013 off and hope that 2014 brings us closure to that magic bullet that just might save our lives.

Christmas

Wishing you all a very Merry Christmas.

Tomorrow will be a day of celebration for those of us who are still here to enjoy but a day of sadness for those who have lost a soulmate/partner, mother, father or sibling.

To my friends who face a difficult day my thoughts will be with you.

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.

Day four - Sete, France

One good thing about holidays is the sun.  If I was at home I would be feeling the same but looking out at a grey sky.  At least here the sun is shining.

My stomach has grown again, not so much round the abdomen but more round the chest area, I look ready to give birth.  It is also quite heavy, my back is aching carrying the additional weight.  We have had our morning walk along the canal that lies just inside the town of Sete, it's always good to make the effort and wander down the streets.  We watched as a motor home pulled into a very tight space, it's front wheels were close to the edge of the canal.  Just as he finished parking a large bus tried to get through, we have visions of the motor home going plunk into the water below, hats off to the bus driver who just managed to squeeze through.

Last night we had dinner, one drink in the sky bar then came to bed, it was only 9 but hubby was tired to.  I try my hardest to stay up for him, after all it's his holiday too.  To be honest if I could just stay in the sun till 5.30 then pick up a decent movie I wouldn't bother going for dinner.  But the whole idea of the cruise is relax then dress up in your finery for dinner.

I have contacted my wonderful Gp again, he has said I can lift the water tablets again, so hopefully my water may stop and start leaving me.  My Gp has been the only support I have truly had from the NHS,   Considering I was Admitted twice to Darlington in July nothing has come back for any further appointments.  Flying can cause the heart to work too hard hence creating fluid in the lungs but this doesn't explain the large influx of fluid to my stomach.  I fear I may need to go straight from the plane to A&E on our return.  Unless I hear from the private specialist, but he was on vacation when we left home.  I believe he gets back after us too.

I have to admit I prefer the small Seabourn ships to the larger ones.  Yes they have more space per person and more amenities but are harder to befriend others or even remember the names of the staff. Sad that Seabourn are selling them.  I guess though it won't affect me because I don't think I'll be around to worry.

I wish we had this delightful weather at home, I was musing over the fact that I need sun and remembered my mother told me that for the first 3 months of my life she left me in my pram under a pear tree in the garden.  She often said I never made a murmur I just loved being out in the sun.

I should close here, lunch will be closed if I don't get a move on.

Day Two San Remo - Day Three Marseille

As we left the Captains table from dinner I looked down - my stomach had blown up while we had been eating, not a lot but certainly different.  Last cruise this dress fitted my bodice perfectly, this one it was dropping off me, but the waist was getting tighter.  We came back to the room with thoughts of getting changed then taking in the show but you never go back out do you.

I awoke in pain, heavy to breathe and discomfort in ribs.  I felt awful too, I didn't know whether I wanted to be up or lying Down.  More than anything I was worried, my ribs were sore and I could tell fluid was built up behind them as well as on top.

Hubby made me go and rest some more as I really wasn't good, so an hour later I got up again, the pain from breathing wasn't as bad this time but the reality of how big I had become sank in.  No longer is there a small bump in my lower abdomen it is evening out up to my chest.  I know my vanity at first was kicking in, always having a reasons ably flat tummy, but this now affects my health.  My breathing will become hard during the night with all the additional weight.  My ribs are painful and angry, the only good thing, the bile has stayed away.  I also had a few (a lot) of tears, fearing I am truly on my last legs.

I text my GP and told him I was bloated and my ribs spongy, I have asked to see if he can arrange a drainage for when I get back as by then I fear My skin will be at splitting point.

We didn't get off the boat as I just didn't have the energy early enough, I regret this as the place looked beautiful and somewhere to remember.  Instead it took me till noon to get myself together, we missed breakfast so had a little sandwich from the cafe before going for a late lunch.

I was strung out most of yesterday but by evening I felt a lot better, this morning as Day Three of the cruise starts my stomach has bloated further, my left side is agony but for the rib pain I can at least take morphine.

Hubby will say 'Are hols really worth it' and I will say Yes.  I am no good first thing at home these days so once I've got that out of the way I am alright.  He has promised me this won't be our last holiday and I'll still be here next year.

The ship is a lot bigger than those we have been on before, I'm not sure whether that is good or bad.  There isn't the same closeness, more space and eating places but harder to get in to conversation with others.  Although we have ran in to the same couple twice and gate crashed their dinner table in deck last night.  In fact we had a late night, not coming home till 11 pm.

As we prepare for the day ahead I will try my hardest to put the fears of meso behind me, I have to hope that some one in the Uk will treat me.  I only need some thing to stop this fluid, which I am sure is due to my left side irritating the stomach.  I am also going to promise myself that if I get remission again I am going to hold on to it and stop worrying about the future, I need to enjoy the now.

As we start the day in glorious sun shine I hope that you have all sunny skies or had them.  In an hour we will be walking along the front and hopefully forget I am ill.

9 yrs later - Still fighting On

The 26th August is a date of great importance.  Firstly, it was my mothers birthday and now it's the Anniversary of the day I was told I had Mesothelioma.  I guess my surgery day is the day I should use but what does 21 days difference mean, because in reality if they had done something earlier I could have been diagnosed in 2001 instead of 2004.

To be honest, looking back, those first few years were easier, ok I had chemo regimes to contend with but I was happier and much fitter than I am today.

I am pleased to still be here and breathe the air, see the sun rise and fall, hold my husband and know he loves me and most days have a reasonable quality of life, sometimes reasonable is great and I then feel guilty for moaning that my pains get me down.

As I sit here on deck aboard Seabourn's Quest I have watched old couples pass me by, they seem spritely and fit, young people with fit bodies tanning themselves and of course a couple of crocks like myself.  I often wonder how others cope when their physical health is wavering and causing discomfort.

The flight over was fast but I did feel a little tightening in my left arm, like the BP cuff hasn't turned off but it came and went.  During the night I woke to my chest feeling heavy, instinctively my hands ran over the bump I still have in front of my stomach.  The top seems a little puffier, the skin above my ribs a little spongy.  I have taken a stronger dose of water tablet, as recommended by my gp, just in case.  I remember my stomach on the last cruise got bigger and bigger on a daily basis.

I caught a side way glance of me in the mirror and boy do I look odd, I am trying not to worry as others are in a worse predicament than I.  I also think vanity is now creeping in.  I've always had a flat abdomen so to have quite a tummy is odd.

After a late breakfast this morning we got off the boat and walked along the front of Le Lavandou, France.  We did enjoy the walk then back to the boat for lunch.  We have sunbathed on our deck, I didn't want to show my belly to the world.  Hubby keeps telling me other ladies have worse but men  don't understand it isn't what some one else looks like, it's what we look and feel like.

Tonight is the gala dinner, we are sitting at the Captains table, I do hope we are sat with some chatty people.  I will also walk in holding something over my tummy!  I wish they had done my draining right the first time then maybe my whole tummy would be back to normal, or I could then have gone back and had the rest drained with time to recover.

Tomorrow another port and another sunny day, at least I hope so.  When we came into land yesterday we came through quite a big storm but it blew over in an hour, the sky was blue and temperature hot.

Guess that's my update for today, please put a pray in for me that my fluid stays under control.  On a good note my dreaded bile seems to have calmed down - at least that's one good thing going for me right now.

To everyone with mesothelioma I hope you have had a good day.

Packed and Ready to Go

It's that time when you sit down and think we are ready but then you start to panic in case there is something you have forgotten!

 

Lexi has sensed something is going on although I don't think she thinks we are both going away, we are just waiting for Lauri to arrive.  Poor girl has just finished house sitting and looking after a cat then to come straight to ours and take over house duties and dog sitting!

 

I can't believe it, we had sunshine, blue skies and heat!  I even went with the dogs over the field, although a very short walk.  Bear has wet eczema and flies were zooming in on his bald wet patch annoying him to death.  Also I was quite breathless on the walk, I can't understand why, as I haven't been that breathless for a while.  At least we found this yesterday, his head was wet which we thought odd.  On further inspection under that mass of hair his skin was red and weeping.  Mind trying to cut his hair was a nightmare, he was pulling and tugging to get away from us.  I go slow and gently, Gary well he just dives in, probably better but I always worry in case I catch his skin.  It hasn't spread and that's the main thing.

 

 

This morning I woke up feeling a lot better than I have for several days, the bile seems to have stayed down a lot better, I wonder if that Roast Beef and Yorkshire Pudding dinner had something to do with it or the milk I drank with my tablets instead of fruit juice.  Either way I was a happier person this morning and life felt good.  It has been a while since I have thought that and really felt it at the same time.

 

I am hoping this is a good omen for the holidays and finally my body is on a turn around with the bile problems, just hope my 3 month pregnant body stays that way and doesn't turn me into ready to give birth over the next 2 weeks.

 

There have been a lot of fund raisers today, Angela put herself into a bird cage to raise much needed funds for the hospice that took care of her father .... I think she went down a treat or tweet!

 

If you would like to donate to the fund please go to  http://www.justgiving.com/angela-caulfield0

 

Two of our employees are doing the Great North Run in September, Paul Wright has ran this for many years donating funds to many charities, this year he is donating to Mick Knighton Mesothelioma Research Fund, Dave Simpson is running it for the first time and he is donating to Cancer Research.  If anyone would like to sponsor them I will be posting the link shortly.  (I have to ask Claire at work where it is!)

 

I forgot to mention that my mother in law has had no side effects as yet on her chemotherapy, although she is having carboplatin on its own I still expected her to suffer some symptoms.  I hope it does its work and reduces her mass so they can operate and remove it.  To everyone else facing treatment this week my heart goes out to you all.

 

One day may seem like we are doomed but tomorrow is always a new day and hopefully what ailed us is behind us.

 

The sun can make a difference to how we feel and I truly hope it has come to stay for a good 4 weeks or more.

 

Quality of Life

A lot happens to us as we travel through this journey.  In my case I have had more pains and related problems, ie this stomach problem of bile together with the new ascities that came at me from a blind corner.

 

They tell us that they will do everything to ensure we have a decent quality of life.  Is that just to handle the mesothelioma or everything else?  Because please this bile problem has been bugging me for years!  It was part of the reason I don't particularly fancy chemo again because I know it will make the situation totally unbearable.  I think my Australian fighter and friend, Lou, is having the same kind of trouble.

 

I know you are sick of hearing me wittering about it, but I can't help it.  I have seen three GI guys, the last actually telling me what the problem is, but no one will fix it.  If the guy back in, I think 2010 had done something, when my meso was under control, instead of saying it was either a ulcer or cancer, I would be in a better place right now.  The noxious stuff burns other organs in time, my poor insides have had enough from the meso without this, and boy has it come back with a passion.

 

It also brings me to another point.  No one but the sufferer or the carer actually does see what is going on inside a home.  We, as sufferers, try to put the good olde brave face on when company arrives.  Seriously who wants to come and visit someone who is moaning about pain etc.  I am always saying to my friends Yes I will get out and do this and do that, I know that on most things it can't happen.  I can't plan whether a week next Thursday I would feel up to a shopping trip, but I say it anyway to be normal.  The carer on the other hand, hubby in my case, is quietly telling them not to make arrangements because no doubt I will fall short and let them down.  My friends probably think it is him being over protective, but it isn't.  He sees far more than anyone else, he understands that I want to be normal and do these things but he also knows that I know I can't.

 

I had a sad phone conversation with a friend who has mesothelioma.  She is in her early seventies, a fit lady as well, who was considering surgery to remove the meso from her left lung.  Unfortunately, now she has made her mind up to go through with it, the meso has surfaced in her right lung.  Surgery has been withdrawn from the options she had.  Alimta didn't work and I believe she is trying a different treatment.  I hope all goes well, she was very bright in her outlook considering the blow she had just received.

 

Another friend who has had surgery is struggling in two different ways.  One, breathlessness, her breathing is getting shallower each time I talk with her.  I have asked her several times what her specialist says and she tells me he says all is well.  I don't believe it, also she has lost a lot of weight, in fact she would be classed as starved from her body weight.  I do worry about her but I can't tell her what to do.

 

Tomorrow is my late Mam's birthday and also the anniversary of the day I was told I had terminal cancer.  Maybe some reflection there then in the morning.

 

The weather seems slightly warmer outside today, Bear has managed to get wet eczema on the back of his head, we have had to cut a whole circle out, he actually looks like a monk!  Typical though, as we will be away soon.  On top of that it seems Lexi may be coming into season.  Boy is our Lauri going to have fun dog sitting this time round.

 

To those on the outside who aren't carer's for sufferers, but friends of either party, take a few moments to wonder how you would cope if it was your loved one in this situation.  Once over I would have thought going out everywhere and doing everything I ever wanted would be the way to go, but meso isn't like a normal cancer.  It has so many restrictions going on inside, and on the outside, well we just look so healthy.

 

To the meso community, happy Bank Holiday Sunday, I hope those in pain are finding relief somehow, those on treatment are coping with the rotten side effects and those in remission, well enjoy it to the full. 

 

Me, well I'm off to pack, I fear this may be my last holiday and that frightens me, its a long time to next April when the weather would make the med a place to visit again.   

For one good day several bad!

Yesterday, although my back was killing from being manipulated on Tuesday, was a good day.  I woke up reasonably fresh and happy.  I would have been at work early but for a phone call but we are here to help and what if I got in work late, I don't run to a clocking in and off system anymore.

 

My niece came over as her car needed to go back to the garage we bought it from, a rattle in the engine was of concern.  Hubby had her the morning while I went to work and then I arranged for us both to go to the hairdressers and have a little girly pampering.  Although I needed the hair cut for holidays.  I can know see again through my fringe, which helps of course.

 

We had a big dinner, braising steak with lots of thick rich gravy, dumplings, potatoes and veg, whether the fat of the 2 dumplings I ate has caused this morning's burning chest and bile problem I don't know.  Maybe I should start monitoring my food, but as I don't eat a mass amount it does seem stupid.

 

Hubby, as you know, has been doing the Insanity workout, or was.  He pulled his calf muscle the other day and has had a few days off.  The muscle was just getting better when he ran down from the garden to answer the phone and he felt it go.  Oh No!  Have managed to get him in with the physio on Saturday morning.  At least he can still walk, sorry limp!

 

The sky outside is grey and that's exactly how my insides feel.  I was thinking of my meso warriors going through chemo and that thought nearly made the bile come higher.  You see if I do get the option, a great IF, in the future, the bile and chemo don't mix well either.  The chemical will work itself back down to my liver and kidneys to be washed out but the bile will then back fire and come back into my stomach.  This is what I think happens anyway, I can't put my hand on my heart and say its true.

 

What was worse, the big belly or this bile?  How after all these months did it manage to come back just before my stomach was reduced and has stayed.  Granted, it isn't as bad as last Sunday but it isn't pleasant either.

 

My meso can be felt too, my right back is uncomfortable leading me to believe that fluid still isn't moving from the pleura.  I will be on edge now until after I fly on Tuesday morning.

 

Time to shower and hopefully see if I can feel better.  I am clammy and sweaty again, which I hate nearly as much as the bile.

 

I should have been attending the funeral of my Meso Friend, Christine Shippen, I am now pleased I emailed her son last night and said I might not make it.  I know now I would never have managed to drive up to Cramlington feeling like this.  Although my thoughts will be with them at 10.00 am.

 

To everyone else, Bank Holiday Weekend is upon us, I hope the weather isn't as grey and wet where you are and that all plans for the weekend go ahead under sunshine.

 

Am frightened but aren't we all?

The week has had been ill, pensive and normal.  The bile has been the worst of the problems that I have gone through, the heavy burning in my chest and the throwing up of same.  I went into the office on Monday to turn around and come straight home.  I text my GP who kindly rang me back and said he would call in.

 

I felt somewhat guilty when he called as I was feeling a lot better and felt like a fraud, other people are out there needing him more than I was.  He listened but didn't say much about the events that had brought me through the weekend, although he did listen to my chest and said I could fly.  Relief over Gary's face as he thinks this holiday will do us both good.

 

Each morning and night I look at my stomach.  I am so frightened that the fluid is going to return, although it took a few months to get to the level of where it was (9 months +) it had been building from at least April this year.  Of course I am going to be paranoid of it's return, I had never heard of this happening before and now having gone through it, I am scared it comes back.  I am taking the water tablets but to be honest I don't think they will do much good, after all they are designed for when the heart's right ventricle doesn't work properly. 

 

Needless to say I haven't got a nice flat stomach, one that I had last year any way, but it is still a funny shape.  Whether I sit and sunbathe this holiday I'm not sure, probably should keep the middle bit covered!

 

I read somewhere that Ascities is usually a sign that we are on our last legs, I don't feel that, my meso certainly hasn't overtaken my body and I wonder if that is why my oncologist said palliative care only.  Even so, if that is what he is offering, I haven't heard anything from anyone regarding looking after me!  No, I still haven't heard from Darlington regarding an outpatients appointment or whether the fluid withdrawn from my stomach had cancer cells in it.  What is wrong with the NHS and continued care?  Is it just us with Mesothelioma that are thrown on the scrap heap and left to fend for themselves?

 

I have gained 2lb already, but this could be down to the fact that I have managed to eat more over the last few days than I have over the last month.  The other down side to my belly going is my back is hurting again.  My back man, bless, said because the weight from the front has gone its putting pressure back on the disc, see I can't win!

 

At least I can get back into clothes but I am still taking a few of my friends things away on holiday, just in case! 

 

 

As I do every night I groom Bear, he doesn't like a fuss or to be cuddled and hugged but grooming is a big bonding thing between us.  Last night he put his head on my lap and hubby couldn't resist taking a snap, although Bear moves if we get the camera out these days.  I can spend anything up to 2 hours a night, especially after he has been running through the under growth over the fields.

 

So today I am clammy and sweaty, I will go in to the office for a couple of hours but it's Wednesday and healing service is at 2.00.  I certainly think I could do with absorbing quite a lot as well as ask for it to help everyone else.

 

The service for Chris Shippen is now 10.00 am on Friday morning, its at least an hour's drive with no work traffic.  I have a feeling that I won't make it on Friday as my mornings at the moment are slower than normal.  I feel terrible as I was planning on going but when I did route master last night I realised it was a little out of reach at the moment. 

Acsities Drained

Friday Morning was not good, I woke up with that burning in my solar plexus and knew I didn't feel well.  I came down and had a few mouthfuls of coffee before going back up to shower.  As I cleaned my teeth I felt the bile rise, I had no choice but to be sick, thankfully the toilet lid was already up.  The little coffee I had drunk came up with some thick gunk.  I took another Rennie and had a shower.

 

I had, for the first time in months, a massage on my legs on Thursday, I also had a small massage over my stomach to show me how to move fluid.  Whether this allowed the bile an escape route back up to my throat I don't know.  Since having a fat stomach the bile hasn't been a problem.

 

On the way to Woodlands my bile was uncomfortable but stayed where it was, a glass of water while waiting seemed to move it down a touch further.  I wished hubby had taken the phone in with us as he could have photographed the stages of my extended stomach shrinking.  It was amazing. 

 

The first needle did hurt, I can't lie, in fact the 3rd one did too!  But this time the needle didn't go 8 inches into me just  2 inches, a lot closer to my side and not too far into my abdomen.  It was done under scan, which ensured nothing was damaged either.  Makes me worry about what damage they did on the last attempt at Darlington.

 

To my surprise Dr D actually syringed fluid out, when I was first laid down on my back I couldn't see my feet, as he kept drawing fluid suddenly my toes appeared, then the top of my feet.  I was shocked I had been so extended.  He didn't have any trouble in draining syringe after syringe out.  He stopped when I said I could now feel him drawing the fluid.  That was when he put a bag on and let the drain do a slow job in letting the rest come out.  At first I stayed pretty flat but realised the drain was probably letting the fluid back in so I sat up. 

I sent hubby home to be with the dogs, there was nothing to do, plus the hospital room was so hot, he was starting to pass out.  I was kept company by Lou who was messaging me for most of the morning.  My blood pressure was up and did  a yo-yo, dropping to 70, rising to 87 back to high 70's then 90's.  I was tired but the morning flew.  I expected to be out by noon, but that came and went.  Hubby came back and again I sent him home, the fluid was still coming and I was happy (is this really me - happy to stay where I was!) to stay and get it all out.

 

No one again has said what is happening.  If the fluid returns I have no idea what I will do as yet, the consultant I saw who organised Mr D is on holiday for 3 weeks, I have my fingers crossed that the fluid will not return to my stomach.  I am concerned about the flight, but if there is little fluid in there surely the flight can't exasperate it, can it?

 

I weight 9.02 this morning, I have lost 8 lbs overnight, not that I recommend this type of weight loss.  Hopefully my insides will drop back into place shortly and I won't look the odd shape that I am at the moment.  Lisa told me I will be like after having a baby, the body will drop back into place.  Never being pregnant passed 12 weeks I now have an understanding of what it must be like. 

 

I did have the sweats quite bad during the night but this morning I didn't wake up feeling like a ton weight was resting on my chest.  My ribs feel normal instead of that feeling that something is behind them forcing them outwards. 

 

Today I am going to rest, looking outside I am disappointed, the weather is dull, windy and looks like rain.  Typical!  I can work on editing book 2 if I can keep my eyes open.  My BP was still low when I left hospital but am sure today on the sofa will put me back on top.

 

Happy days ahead, our holiday isn't that far away now, my stomach hopefully will go back to normal, ok I may have a little unfit roll but at 53 I'm allowed.  Just need to start eating again so that my arms don't look like sticks.

 

On a wonderful note, I reached our 17th Wedding Anniversary.  On our 8th I never thought I would reach this far so I am thrilled that I am still here and of course our marriage is still rock solid and we are still in love with each other. 

 

A lot of good news in the community too, many people have had clear scans, some are now 6 years clear of meso, that in itself is something to celebrate.  Wish I had been as lucky but then I am still here and many have not been able to share wedding anniversaries this year or birthdays.  This still hurts me, we have been robbed of a life due to the greed of man.  Man is the root of most evil in the world, either to make a quick buck or to kill for sport.  I won't go there today, its a good day.

 

Please spare a healing thought for me and everyone who is undergoing treatment, it doesn't cost anything to say please send healing to everyone with mesothelioma. ... Thanks.

Chris HasTaken Her Wings

It is with great sadness that I write to inform you that one of our mesothelioma friends, Christine Shippen, took her wings at 2.00am this morning.

 

Chris and I have emailed for a long time, nearly as long as she was diagnosed in October 07, again it took over a year for them to find out she had Mesothelioma, taking ill in 2006.

 

The news that she was taken ill so fast shocked me a couple of weeks ago, she died at home with her family.

She was so excited when her first grandchild was born to her Son, and so looking forward to the birth of her daughter's baby last week. 

 

Chris wasn't a member of face book but gave her story to many of the websites we all read, including  my website. 

 

She already has a Snowdrop fund set up with Mick Knighton Mesothelioma Research Fund and I believe her request was donations to this instead of flowers at her funeral.

 

My thoughts are with her husband and children.

Weight and Eating

Not long until my lump is drained and maybe I can start living normally.  I have managed work 3 days now, only 3 hours, but by the time I have pulled files out from one shelf or out of my desk drawers, entered info on the computer, turned this way and that for the printer then to file what I've done etc my stomach feels like, well Hell.  I have worn some hipster jeans but after a while even they hurt, they sit just under the lump but now are forced down ward.  Those men you see with big bellies and their jeans hanging six inches lower than their backside, well that's now me, and I hate it!

 

I have written a few articles on and off for various websites over the years, always to promote what Mesothelioma is like.  Lately, I have had the privilege of being asked to write a few for MesotheliomaHelp which you can read by clicking here, they are similar to what I write on my own blog but not everyone with meso would ever find my blog let alone read it.  But the site also has different people writing on certain subjects and sometimes a different view point can make all the difference to what you think to what you know.  Why mention this, you are asking?  Well having this fluid in my stomach has made me feel ill some days and ok others.  I have gone on to lots of sites that detail ascities but not one says 'you may feel like' or 'if you feel like do this'.  Mavis, the Google Queen in our group found me a discussion group, one that was for ovarian cancer, the thread was now closed, but what disappointed me was that Macmillan information or Cancer UK don't say the how you will feel in much detail.  Yes they detail symptoms, but the symptoms are how to diagnose the disease not how to deal with it in a personal way.

 

Hubby has started the intense workout video's Insanity.  These are all cardio vascular exercises to rid him of his over large stomach.  He doesn't eat junk food but can devour a large packet of crisps in 5 minutes.  He had food poisoning, am sure I mentioned this before, and then lost weight before gaining lots and blew up to nearly 15\16 stone.  He lost a lot of that but his stomach has never gone and he blamed the poisoning for doing something to him.  His tops are stretched to the maximum!

 

 

 

I have never nagged my hubby but on the last holiday I saw what hubby will morph into in another few years if he kept his crisps and over eating up.  Finally he agreed to do something about it.  I once told him that if he suddenly went on a diet and lost all his weight and toned up after I died I would come and haunt him.  If he could do it to find a new wife he could damn well do it for his current one.  I think I got through to him.  So the menu plans have come out and even more healthy eating is currently taking place in our house hold.  Problem for me is that I am still not eating enough.  His stomach needs to shrink so instead of eating till he is full and bursting he is learning to eat until he is nearly full.  Me I have a little food and feel stuffed, example tonight one piece of broccoli, 2 oz filled steak and 2 new small potatoes, a few thin slices of mushrooms.  The dogs got a potato between them.  I have also consumed today 2 thin wafers and half a pork roll, yes the dogs got the other half.

 

I don't want that fight I had in 2011 where I had to gain weight because I had dropped so much.  It isn't easy for me to eat a lot, that's why I didn't think I had middle age spread.  I knew I was eating a lot of liquorice and thought that was what caused my small bump at the front, now I know it was fluid slowly building up.   

 

On chemotherapy you don't really want to eat, either due to nausea, sore mouth, sore oesophagus or loss of appetite.  Your stomach shrinks and although it is something that can grow and stretch, hence we get fat because we overstretch it by overeating, it is hard when it has become use to eating very little.  Not eating enough makes us lethargic and down, but it also does other damage, our organs aren't receiving the nutrients they need to fight off illness or keep our organs healthy.

 

Taking the water tablets as well I have also noticed how thin the rest of my body is going, like your insides are being sucked dry.  My skin isn't as radiant, ok I know I am old but my skin has always been soft, now it feels hard and dry.  It seems they are draining me of fluid but not from the right spot!  Which brings me to any other worry, once the lump goes (maybe I should give it a name?) and I am to stay on the tablets will my insides keep getting sucked dry?

 

Wow I've written an essay not a blog.  So where do I end this blog, if you aren't eating enough ensure you take vitamins (something I mean to do everyday but forget!), eat small and often (not always easy to do) but these are essential to us.  Instead of fighting this battle of food alone try and get the family involved too.  Work on menu's that if you don't eat a lot you are getting some of the 5 inside of you.  Veg and fruit are a must, carbs and protein are important.  500 Calories can be made up of healthy and filling food without the plate looking overloaded but a good meal to feed each part of your body.

 

There are many people currently fighting this cancer, the treatments are giving them so many problems but they are battling on.  At healing today I asked for a rainbow of healing to fill each and every one of us, whether you believe or not there is no harm in asking for healing in your mind... you never know a couple of those pains might just disappear.

 

On that note I bid you all good night. 

 

 

 

 

 

 

Sunday Sunny Sunday

I dreaded going to bed last night so sure I would have the same bad night I had before.  I said to hubby if you wake up during the night and I am lying on my back please roll me over.  Bless, he did once during the night.

 

Bear came up at 5 wanting to go out but I vaguely heard the order Lie Down so I just drifted back to sleep.  He came back up at 7 and out of bed hubby got and stayed up.  I came down at 9, I needed the additional sleep but any longer and my body would not benefit from it.  I felt so much better, I had somehow stayed mainly on my left side.

 

The sky up here was grey mixed with blue so I made my mind up I was going with the dogs, after a little messaging on face book I showered and actually managed to get a pair of hipster jeans on.  Tight where the button fastened, but on.  The fields were really windy, Oops and I didn't take anything to cover my mouth.  I managed, both Lexi and Bear loved the fact I was with them and stayed close by me the entire walk.  It was wonderful to feel the fresh clean air on my face.  Once down the first field the wind wasn't as harsh and I enjoyed watching Bear go and sniff here and there.  So many butterflies this year and so many different coloured ones.  Also a beautiful blue dragonfly stayed close by the pond.  They are so beautiful to watch as they dart here and there.

 

As hubby has started Insanity, I sent him for some decent trainers yesterday.  Mine are looking rather shabby so he said we would go and get me a new pair as this shop in Bishop had such a large range.  He also needed some shorts to work out it, accidents could happen in his loose fitting ones!

 

I tried on a couple of pairs but my feet weren't comfortable, I didn't think at first and bending over pulling off and putting on shoes my stomach was starting to hurt.  The trousers were obviously pushing in and forcing some of the fluid back.  When I finally choose a pair and was waiting for hubby to pick out some shorts I had terrible stomach ache.  I thought I was going to collapse with it.  The pain was similar to when you know you have to go to the toilet, but I didn't want to go.  I left him in the shop and made my way outside, holding my unborn stomach.

 

He drove home like a bat out of hell, I had to tell him to slow down as I felt my insides were sloshing from one side to the other.  Hot water bottle and stripped off jeans the pains started to recede.  So it was an hour on the sofa.

 

I watched and counted as he worked out and put some roast potatoes in, not that I was hungry but it is Sunday.  I have managed to eat some veg, a slice of beef and two small roast potatoes, not a lot really, but at least it has gone down.  The dogs were pleased as they got quite a lot of dinner.  By the time my stomach is drained I think I will look like a skeleton!

 

My head is still all over the place, one minute I have no thoughts of what could happen or what is happening, the next I am worrying and on the computer reading articles.  Mavis has been a great help and found a site where a discussion was on about ascities.  If anyone else would like to read it:

 http://www.facebook.com/l.php?u=http%3A%2F%2Fwww.inspire.com%2Fgroups%2Fovarian-cancer-national-alliance%2Fdiscussion%2Fcoping-with-ascites%2F&h=LAQGFnbIC

So its work again tomorrow, I have no idea what I am going to wear either.  I know my friends brought some of their wardrobes over but the dresses are more for the cruise than work.  Even if I wear leggings I haven't got anything to go on top!  I never thought a woman in her 50's would turn up to work with leggings and a long top on.  When I think back to the ladies I used to work for when I was in my late teens, you called them Mrs and they always wore suits.  I can't remember the last time I wore a suit for work, probably just before I was cut open in 2004.

 

 

There has been a lot of writing about the new trial to take place in Australia, Amanda has wrote about it on her blog and Nancy (Guest writer on here) has done a cover too. 

 

http://www.mesotheliomahelp.net/blog/2013/08/australian-mesothelioma-clinical-trial-brings-a-cure-one-step-closer-to-reality

 

There are quite a good few articles on this site, but I do like the way they break information down.  I don't know what it is anymore, probably my chemo brain, but following medical information seems to be hard work for me these days.

 

Well I am off to sit on the sofa and catch up with a few TV programs, I can't wait to see what is going to happen in The White Queen.  Boy how devious people were in those days, although I wonder what's changed.

 

Good luck to those having treatment this week, I just wish chemotherapy didn't have to be as harsh on us as it is.  One day someone will invent a tablet we take, like a blood pressure type, and mesothelioma will become a chronic rather than terminal disease.

 

 

 

Healing Circle - Unbelievable

I went to see my GP yesterday to renew the water tablets and have a chat.  My GP has been wonderful since starting the practice, he has gone out of his way to help me through the meso and has promised to be my back bone as we move forward into another journey.  He never met me when I was originally diagnosed, he joined the group just before my surgery in 2009.

 

He checked the computer, still no discharge papers from Darlington.  I told him I had seen Dr Vish and Friday I was having my stomach reduced.  He isn't happy that I went the private route but understood the way I felt about this lump out front.

 

I talked about the future, who would help me through the decision of choosing between Dr Steele, Dr S or Prof Fennell.  He told me he would.  Although he wants me to try and get back in touch with my old oncologist Dr Hughes, he was private when I saw him, but now back on the NHS.  My doc thinks it would be a good idea to go through things with him too. 

 

I think my Doc is hoping that St Barts or Leicester may talk my current oncologist into trying a different chemo, good luck with that!  I said it would be better if I could have treatment up here than have to travel to London or Leicester and have it.  He mentioned that due to trusts and funding that may be difficult, so I said well I can always pay for it.  He said I shouldn't have to pay privately for a treatment to keep me alive, I have already paid out quite a lot over the years and the insurance paid for my second round of chemo.  Of course the first round was free as it was on trial.  I would pay anything to keep me alive and so would hubby.

 

From the doctors I went straight to healing.  I haven't been since long before our last cruise, so it was great catching up with the ladies.  Three have read my book and were telling me how much they enjoyed it, even though vampires were things they would never normally read.  I was told off by one because she said she couldn't put it down for 2 days and didn't get any house work done!  I was pleased, in fact I was beaming with the praise.

 

We went into the service room and the atmosphere was electric.   Myra and Shirley have both worked on me together for a long time and it was the same yesterday.  As I sat waiting I thought of all those with meso and especially Lou, Tom and Esther at the moment.  I could feel tingling long before I sat for healing.  I can't say what I felt apart from I did feel someone wiggle my nose.  From somewhere deep I had a feeling of peace start and it came out over.  Tears fell from my eyes yet I wasn't upset or felt like crying.  It was if my soul had been touched and lifted.

 

When we asked for the energy created to be used on others I sent mine as always to those who I know with meso by name and then the meso community.  I truly hope many of you felt the peace that I did yesterday around 2.30.

 

As we sat watching TV last night I attempted to groom Bear's under bits - not a chance!  My mug of tea was down by my side as I was trying to get those knots out under his back leg but he got up, sniffed my mug and I lost my tea!  I have to put a towel under the mug otherwise he splashes it everywhere!  Sometimes he can go for weeks without bothering then suddenly he wants every cup I have.  Our Jagar (Bless her) used to love my coffee, no cup was ever safe.

My Mug or Bear's Mug?

My stomach seemed smaller last night but I forgot to take the water tablet and this morning its looking a little more squashy!  I am still not hungry although I did manage a tuna sandwich and soup last night, not really enough to keep me going but at least it is something.  I felt extremely full by the time I finished it.  I jumped on the scales this morning, I weight 9.8, so I haven't lost a great deal, 6 lbs in total.  Makes me think the fluid is getting heavier as I haven't really eaten properly now for 3 weeks.

 

Mavis has done well with the protest but still needs more people involved, visit her website for details.  One last piece of sad news, Linda (ADAO) was burgled - they took those things that can never be replaced, jewellery her beloved husband had bought her, including his wedding band.  I hate these low lives.  Sentimental value is worth more than any £ or $ that they would get to probably feed a habit.  I just hope that saying works "What goes around comes around".

 

Well on that note I had better get moving.  I'm going into work and hopefully get a few hours in.  The sun looks like it may stay this morning, not much of a breeze but plenty of floating grey clouds.

 

To all those involved with mesothelioma I hope this ray of sunshine lifts you today.

Stomach Result

I emailed a private doc that I had seen to diagnose my hernia, Mr Vish, on Sunday, in the hope he will be able to do something with my tummy.  I have waited patiently for the NHS to send an appointment that was supposed to be for last week, but then what if they didn't do anything by our holidays - I would be snookered.  He emailed me at 8.00 Monday morning and said I could see him that night.

 

The weather was terrible here all day, it rained and rained.  I knew I had to go to my mam's and sort the house out as I am renting it to a friend for a couple of months while he waits for his new house to be finished.  It was emotional again, packing up the remainder of things and giving away the final things that adorned her bedroom and the living room.  I had sorted 4 boxes out that I thought we, as a family, would want to go through, and they have gone in the attic.  I only filled up once but managed to keep myself focused and not break down.  I still expect to see both my parents sitting there, but more so my mam.

 

I had an appointment with my back man at 3.30, after a quick stop at home off I went to Durham.  He can tell a difference with the muscles in my back, they are certainly relaxing and thinks the stomach is now putting a little pressure on it.  Once my stomach is sorted he believes my back will be ok, and will give a few exercises to ensure I keep it strong.

 

We stopped off at home to feed the dogs then off to Darlington to see the private doc.  He scribbled some notes down, examined me then told me I was getting treated on Friday morning.  He isn't doing it but the radiologist is.  He will then see me when we get back from hols to ensure it has stayed down.  If it comes back up he is more than happy to put a pin in it (joking).  I will feel rather embarrassed if it is all fat that I have suddenly put on!  Seriously though he tapped here and there and could here fluid.  He doesn't think its a lot either but enough to cause the problems of not feeling hungry etc.  I think maybe the water tablets are working, my wrists, ankles etc are looking thin, I think they are pulling all my fluid and pooling it in my stomach!  He told me they will help control the symptoms of fluid.

 

We came home and ate, I didn't realise how late it was, nearly 7.30 by the time I put the dinner plates on the table. 

 

Lou, our wonderful warrior in Australia has just received news that she is starting chemo again.  I am pleased that they are going to treat her again but also worried for her.  She has had bad reactions, much like me, to the chemicals.  She is being admitted for treatment, I guess by now she has already had the first lot of chemo, due to time difference.

 

We spent a little time yesterday texting, without saying much to anyone, her stomach too has been expanding and when she got her results her specialist told her the cancer is thriving, fluid in her abdomen too.  Please read Lou's story if you haven't.  She is an amazing lady who has been through more treatments than I. 

http://asbestosaustralia.blogspot.com.au/

 

Bear is still staying by me and last night kept resting his head on the side of the sofa and giving me those big brown eyes.  Although I think he was after doggie treats rather than wanting kisses!  AT the moment he is waking me up every morning at 6 am wanting to go out, he is consuming so much water during the hot nights he can't hold out.  I don't want to make him lie there bursting at the seams but I have to hope this won't form a habit.

 

As I wait to hear how Lou is, I know so many people are going through treatments or preparing too.  I am worried myself about starting something.  I want to get the cancer back under control but am terrified that maybe the chemo could kill me the next time round.  We are always dicing with death, whichever option we opt for, or if the oncologists are willing to give.

 

The meso community supports each other through these times, as well as when we lose a loved one to this terrible cancer.  We share the good news and celebrate and take the bad news to our hearts.

 

I must try and get into work, the sun has come out today so maybe I can fit into another of my friends skirts.  Oh to lose my tummy, shame Mr E couldn't get rid of his so easily!  I want to get him the Insanity work out discs but I have been unable to find them in UK outlets.  We saw this advertised in the States when I went for my last cryoablation, wish I had ordered them then.  I would have a nice slim hubby, well if he actually did do it!

 

Hope Steve has arrived at his skiing, Steve & Linda are filling their days doing something positive, Mavis is resting, Tess is still meeting her Targets, Amanda & Ray are having some chill time and Lou, hope the chemo is being gentle with you.  To everyone else, have a good day.  I feel uplifted and hope that I will stay this way.