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  Surgery has been withdrawn from the options she had.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.   

Dogs Day

I managed to sit in the garden most of the day, although the sky was more cloudy than blue but I didn't get to walk the dogs.  It was too clammy for Bear to be racing around chasing pheasants or sniffing out whatever has been around.

 

As hubby cut the grass and weeded the veg patch I sat and read another Scott Mariani book, how Bob Hope manages to tackle every armed man and come out of it unscathed is beyond me.

 

Chris called up for a coffee and a chat just as the rain started, although it only spitted a little.

 

My stomach hasn't gone down any further nor have I spent time at the toilet, slightly worried that the water tablets are doing nothing.  I am back to not being hungry, hubby made a salad for tea but I only managed a little ham, a piece of lettuce, some apple, two grapes and part of an avocado.  Not enough for a growing woman like me, Ha!  In fact Bear, who sits by the table and watches every mouthful I eat with envy, decided he wanted to try what was left.  Salad and dogs usually don't go but he enjoyed the avocado and a grape.  Usually if he doesn't like something the moment he puts it in his mouth he drops it out, so I was surprised he ate them and wanted more.

 

Lexi got a little excited outside and wanted to play, three runs for her Frisbee and she's done, but Bear joined in too.  He wanted to play football - they are really like kids aren't they. 

 

I rang to see how Chris Shippen is doing, I am pleased to say she is home but she isn't eating and has no energy for anything.  Her grandchild is to be delivered on Tuesday and I pray that Chris will be up and feeling better to be with her daughter and hold her hand. 

 

To everyone with Mesothelioma and for those who take good care of us I hope you enjoy the rest of the weekend.  If you live up north there is always Sunderland Air Show to visit. Me, well I'll be in the garden again tomorrow if the weather is ok.

A New Day

After the terrible start to yesterday I finally got out and sat in the warmth but under the clouds!  My GP arrived at 1 to check on me and my tummy.  I would be lost without him as he does more than most doctors I know.

It took a while to get comfortable and I was pleased that Bear finally stopped wanting to be by my side and disappeared into the brick shed in the garden.  He loves it there as the floor is concrete and the building doesn't get any sun. 

 

I have heard from Mary in the USA, she has contacted Prof Fennel and he has a couple of options for me to think about, so once the stomach is down I hope to revisit him and maybe get something that will push me forward and keep me alive for a good few years to come.

 

A lot of people have left words of support and comfort over the last couple of days, it does make a difference when you know someone else is going through the same but can take the time to wish you well or pass any information they may have.  Most of my fellow bloggers are doing well at the moment and I hope they all continue to do so.  Good news lifts us all and reminds us that we can keep going.  Lou has an important meeting on Monday and I pray they offer her something useful too.

 

My darkest thoughts came to the forefront of my mind yesterday.  I was frightened and thought if this is what life had to offer I didn't want to be apart of it.  Today I am back on the ladder climbing up.

 

I can't believe my stomach looks like this though, Bear was pushing through my legs when hubby took the picture.

I feel for all those mothers to be in this heat carrying such a weight.

 

I have lost 4 lbs in total, but the stomach hasn't shrunk any since leaving hospital.  I do need it to go further down so I can at least fit in to my trousers.  I know you can buy bigger sizes but then they will hang on my bum and legs.

 

I didn't sweat last night but I did go to the bathroom a couple of times during the night.  Come on fluid get sucked out of the body and back into the blood stream so I can pass you out through my bladder!

 

I have heard that many people have problems with stomachs like this and have to have them drained regularly.  I would hate to think I had to go through that pain every other week.  Although my GP was shocked they didn't insert the drain under Ultra Scan guidance instead of just marking the spot.

 

Mavis is currently on a chemotherapy called Gemcitabine, this has been used as standard in Australia for approx. 18 years with good results so I can't understand why we can't use it here as a back up for those who have had Almita twice.  Although my problem is the platins they use as agents.  I wonder why they couldn't mix Almita and Gemcitabine together?

 

To be honest, I just want the stomach to go, I can cope with the meso growing at a slow rate but I can't cope with this.  It is putting so much pressure on my ribs, chest and back.  I have lifted the MST to 160 morning and night, maybe why I woke up without as much pain.

 

On that note I am off in the shower, there is a slight breeze picking up outside and I really would like to go with the dogs. 

 

Hope everyone else is having a good start to the day, I feel for those on chemo at the moment and those who are in hospices.  We forget what our partners go through sometimes maybe one day we should have a carers day, like a mother's day, to say thank you for being there.

Saturday Again

Well the sun was shining at 6 am but by 10 the clouds have come across and rain looks heavy on the horizon.

 

My GP and lung nurse both phoned with the MRI results, thankfully, and I mean thankfully, the meso isn't affecting my back.  I have a protruding disc between EL4 & 5 which has trapped my nerve root.  I have no idea whether they can manipulate this back in but I hope so.  I don't particularly want to spend the rest of my days in agony with this as well as the blasted meso.

 

Can't help but write that I am feeling rock bottom, with the loss of both Debbie and Helen this brings it home to us that we won't last till our old age but will be taken long before we are due.  It isn't fair that I won't get to claim my pension or become one of those old relatives you want to lock up in a cupboard. 

 

Our beautiful Meso Warrior Lou is also facing up to trying new treatments, a risky one too, having had everything on offer her meso just doesn't know when to quit either and on Monday is going to see about a new radical treatment.  I hope the information is good but more so the risks aren't too big endangering her life.

 

I would like to have attended both funerals of my friends but getting to Plymouth is out of the question at the moment, a long trip when sitting for an hour is all I can do, but I had hoped to hop onto a train to Runcorn for Helen's, under instructions from Barry I am to stay at home and get better for my holiday.  I guess Helen would have said the same.

 

Time I moved my body and went with hubby and mutts across the woods, hopefully moving my body will get my leg working properly and I may improve in mood!

 

I hope you have a good weekend, wherever you are.