Saturday, 29 December 2012

A Meso Pain Day

Having had a couple of nights with the old Meso sweats, last night was a rude awakening to pain once again.  My sleep disturbed by a pain in the heart area, as much as I hope it is something else my brain kept telling me my pericardium was once again filling with fluid, did the chemo get rid of the first lot and this is a replacement I just don't know. 

I didn't want to wake hubby so with my little torch light I found my morphine and took a couple of tablets, the rustle of tablets woke him so we both didn't sleep well.  In my sleep my mind was trying to lock the pain away, I often wonder if this is what happens with other meso sufferers.

I had planned to go shopping today as well as take the dogs with hubby, the walk was out due to the weather and shopping would be no fun with a very heavy heart, but we did nip to the local shops and had thirty minutes away from the house.
We came home and decided to check what pictures we have on the computer and check our cards to make sure we had them all loaded.  The hours have just passed us by and we have had a laugh at some of the photos.  I bought hubby a negative scanner a couple of years ago and one rainy day he went through and put some on a disc, neither of us had looked at them so we walked down memory lane.

I remember this been taken, we met a Dutch couple on our honeymoon in 96 and we were together on a trip to Columbia, the policeman just let us hold his gun, even though only a couple of weeks prior there had been a gunfight between the police and a drug baron.

My beautiful Dana, I still miss her all these years later, I loved this suite and wish I had had it recovered rather than buying new!
Our Dana and Tyke both who would sleep on our bed even when we were in it!
A sleepy hubby and baby Jagar, who we lost when she was 2 from cancer
Our Wedding Day, my mam and dad, Nev and Stephen
Memories that we have and they still feel like yesterday.  We take pictures and video's but how often do we really go back and look at them?  I have vowed to go through them all and even find the old video's we took and play them.
Christmas is the hardest time for those who have lost a loved one or are caring for someone who is seriously ill.  Having read a few entries today on Facebook my heart goes out to so many that I should remember how lucky I am that I am still here, that I have outdone the odds first given to me and hopefully will still be around to celebrate 2014.  My future for treatments may be bleak but then that magic tonic could just be around the corner.  This time 4 years ago I was facing death, I came through and I have to hope that I and many others in my predicament find something to keep us out of pain and in remission.  If nothing else we all have Hope.


Wednesday, 26 December 2012

No 'M' Word here for a few days

It amazes me how much energy we use for one day, we pull everything we can and make believe we are well and truly fit.  I am so pleased that I didn't have chemo in December because Christmas Day was wonderful.

Although just hubby and I shared the day together it was a day like no other throughout the other 364 days we have.  Ok I took a little bit of getting myself organised on the morning, two cups of coffee before I showered.  No presents allowed until both of us were dressed and ready for the day.  Although Lexi was getting a little impatient, she wanted her presents and did her utmost to break into the lounge quite a few times!

Bear wasn't bothered on opening the treats we had brought them but delighted in helping me open mine, he would stand over me or next to me, his nose in the wrapping paper and drooling constantly, but he enjoyed the fun and excitement of it all.  Lexi, on the otherhand, snarled every time he went near either of the stockings that were for them.  She had no problem ripping the paper off and getting the goodies from inside.
We didn't set a time on when dinner would be, the Turkey having gone on a slow cook all night, it was up to us when we put the roasts and chipolatas in.  I must admit I did have a laugh at some of my presents, a bar of chocolate, a tin of old fashioned sweets.  The one that made my eyes water was a calender of the dogs that hubby had planned and pained over pictures for.  Then he gave me an empty box with a note inside saying "Can you guess what your present is?"  So I had another box to open with a beautiful diamond bracelet, two to open for the price of one, one might say.

Lexi over stuffed herself on treats, just before dinner she was looking slightly on the green side, if dogs can look that way.  So after our lunch and before their Christmas Dinner, we took them over the fields.  It was the first time ever that we have done this on Christmas Day and it was great.  There was no wind, the temperature wasn't fantastic but it didn't stop us have a wonderful time.  The ground is so boggy though and both needed the hose pipe in the compound before they would be allowed entry into the house.

I received a beautiful calender from my Secret Santa of the Mesothelioma Warriors, many pictures on it could be our Bear.  Hubby had hidden it so I couldn't peek but could he remember where he put it on Christmas morning.  When we were cooking dinner he disappeared then called me into the lounge holding a brown envelope, found at last!

I hope everyone else had a day to remember but let us not forget those who have lost their loved ones and Christmas Day would have been a hard time to bear. 

I hope and pray that we all will still be here next year to celebrate another Christmas with those we love.

Sunday, 23 December 2012

Another Meso Christmas

I am sure that I and many others are celebrating the fact that we are still here and around to spend another Christmas with those we love.

Four years ago I didn't think I would see 2010 let alone 2013 and isn't it a wonderful feeling, yet this year there has also been a lot of sadness, more deaths to this terrible cancer than I have known about in previous years.

Yesterday I had a migraine from hell and thankfully this morning I woke up, ready to get my act together, although I was still tired.  I wanted to change the lounge round so we could have the TV in the centre of the room and the tree where the TV had stood.  Not so easy when you have a large curved sofa and neither of us knew how it came apart.  Hubby pushed and pulled and we heard a crack, the sofa came apart and the connecting bit broke.  Thankfully it weighs that much I doubt it will come apart when sat on!  The whole room has been turned around and I quite like the end result, although my chair is by the door so I will be the one getting up and down to let Bear out, maybe not such a good idea!

Trees are up in the lounge, hallway and kitchen, phew! Then it was finish wrapping presents, Lexi got excited then and started trying to peek into bags.  This is when I miss our Tyke and Dana the most, Christmas was an exciting time for them, both would guard the Christmas tree in case someone would dare steal a present from underneath but more so because they knew they had gifts there too.

My best friends arrived dressed in their elves customs once again and we exchanged gifts, tomorrow we have flagged as a baking day, it was suppose to be today but the trees and me wanting to rearrange the lounge took up most of the day. 

I would like to visit the shops but if the weather is like today then I will certainly give it a miss, hubby has to pick up the turkey and pork from the butchers - he will be there for 7.30 in the morning. We both know from experience that the queue outside will be 20 or 30 before 8 am.

I hope everyone else is ready for the one day that causes more strife, family arguments and so much spending, but then it wouldn't be Christmas would it.

Friday, 21 December 2012

Radiotherapy Done and Dusted

Hubby as usual had us out of the house with loads of time to spare before my appointment but on this occasion I was pleased.  The roads were flooded in a few places so diverts were required and we arrived with only 5 minutes to spare. 

We were took in to a room where one young lady told me what the procedure would be, a quick CT scan for the area then mark me up then I would be free to wander for an hour then return to the area for treatment.  She gave me a top to change into and stupid me didn't realise there was a curtain around the area for me to draw.  So I whipped my top off and put their wonderful top on.  To be honest I don't know why I bothered as the minute they had me on the scan table they pulled it apart revealing all.  After the scan and the marking up a different assistant came through and said the doctor would probably want a word and would I just wait outside.  So we sat and sat, an hour and a half later I managed to catch another girl and ask if we were free to go.  She said the Doctor wouldn't be long but I had time to get a cup of coffee.  We popped along the corridor and I bought a coffee, back to the little waiting area and another 30 minutes later we were called in.  The Dr wanted a word.

Obviously the notes hadn't been read, she asked where it hurt so I told her that my left breast hurt when I undid my bra and it was then painful through the night together with this new area that is right inside my breast.  Oh she said When was your last scan, I told her September and then this small one, then she said its no good I'll need to speak to your oncologist, I am just doing the one that's on the surface.  Oh Dear he's in a meeting till 1.30 so you'll need to come back.  Forty Five minutes to spare, I suggested we called in to see Dr Owens, my surgeon from 2004.

I forgot how large James Cook is, thankfully there are short cuts from one side to the other, when we arrived at his reception no one knew if he was in let alone available but an assistant went to look, came back took our name then came back and beckoned us in.  It was great to see him, he said we were lucky to catch him as he had just finished surgery and was getting ready for a meeting.  Nevertheless, we chatted about life, his lovely twins, his dogs and of course mesothelioma.  He told me I looked well and was pleased I had put some weight on.  The time shot past I didn't expect him to give us so much of his time, he also mentioned about patient involvement and said if something regarding Mesothelioma came up he would get in touch.  At 1.25 we left to return to the Radiotherapy department.  As we walked up the Radiotherapy corridor one of the young girls came towards us and asked us to go over to the new Endeavour Unit as my treatment would be carried out there.

What a beautiful building, brand new to James Cook, housing 3  up to date machines.  Once again we sat and waited patiently, another forty minutes or so and then my name was called.  In I went to the changing room and modelled their new tops.
I asked if I could take a photo of the machine but I was told that they don't like them taken as it ends up on face book. I should have taken a quick one of the reception, a nice area if you need to sit for a while.
I felt embrassed as it was two young men that were carrying out the treatment.  I don't like my body to start with let alone showing my boobs but I didn't really have a choice if I wanted the treatment.  I must admit it didn't take them long to have me in the right position and then it was done.  We finally left James Cook about 2.50 pm, a long day for us sitting around.  In the car hubby said "You know we may return to an accident as Lexi hasn't been" The dogs had been on their own some 5 hours, we never leave them for more than 3 1/2, so I guess today was a test. 
The roads were busy but thankfully the diverts were removed, we came home to a lovely greeting and no accidents, a quick cup of tea and I went to the office.  Everyone had gone except Nev and my IT manager.   I stayed an hour then headed home.  I hope everyone who had a last day at work today had a lot more fun than I did!
I hope I do get an appointment in the New Year so I can chat to Dr Peedell about the radiotherapy and if he managed to get both.  I must admit the little firenips haven't been around since the chemo lets just hope it stays that way.  One thing the Doctor I saw today said was there were quite a few adnormalities in the breast area - I hope they took them all out!  Another thing I said to hubby was I am pleased she wasn't my oncologist - she certainly didn't have any bedside manners and felt awkward with me. 
So another treatment down, no more scheduled.  For a body that has taken such a beaten it certainly still operates well, so many others out there have it a lot worse than I. I should remind myself that and stop moaning when pain troubles me - Note to self I think!
How can I moan when I have these two in my life!

Wednesday, 19 December 2012

Date for Radiotherapy

I had a phone call on Monday to say that an appointment has been made for Friday to be marked up for my radiotherapy, that means goodbye 3rd boob I hope.
Believe it or not the appointment letter actually arrived yesterday and it tells me it will take upto 2 hours to sort out the radiotherapy, mark me up, my oncologist work out the beam widths etc and then I will have my blasting.  At least it will all be done on one day.
Its our last day at work on Friday too, I do hope I will get back to wish everyone a Happy Christmas.  Its the first time we are closing down for the whole of Christmas, usually we open up before the sites so we can catch up on paperwork etc but with the decline in our industry I doubt there is any paperwork to catch up on, except of course my desk, I am so far behind. 
Now I have started back on the omperazole my stomach is starting to feel slightly better, strange how a couple of nights without a tablet can make the whole situation worse and then getting back on top is a long road.  I am wondering whether my extremely bloated tummy is to do with the bile or the meso, I hope its the bile, although from what I have read it isn't a nice thing to have and is very hard to get rid of.
My bloods, when I saw the onco, said the Liver was elevated, I just hope the bile isn't causing some type of liver disease.  Maybe I worry too much.

I heard from a lovely lady in my meso circle who has just become a Grandmother, I am so pleased for her because she never thought she would live long enough to see it.  Another nice thing about it is that I am sure she will enjoy many years with her Grandson as her meso is staying stable and long may that continue.

Well that's it for now, will let you know how the radiotherapy goes, I have a feeling I am trying out the new machine, at least I hope I am!

Sunday, 16 December 2012

Excessive Bile and Mesothelioma

Why do I have the worst experience when being treated?  On Saturday the guy came to insert the needle for my sedation for the endoscopy.  I had used elma cream so I wouldn't feel it go through my skin, he missed the vein then spent 5 minutes pushing the needle this way and that.  I had to ask him to take it out and try another vein, my hand was throbbing.  They say you don't know when using elma if the vein has been missed - believe me you can!  So he went for the elbow, couldn't get it in, again he spent time trying to get it in, another 5 minutes of pain.  Changed arms, it went in, some slight adjustment but finally he was happy.  Went to theatre and the anaesthetist complained, it was in the wrong arm!  I explained about the doc missing my veins and said once you put the stuff in you'll have to catch me before I fall, don't think he saw the funny side though, but I went out like a light, he must of managed to get me in the right position. 

News is I have bile from my throat all the way to my duodenum - on looking excessive bile up it can cause weight loss, loss of appetite and the feeling of being full all the time, can cause nausea and vomiting together with a whole host of other complaints we have when on and finishing chemo.  I seriously think that this is a side effect from the chemo but due to the way meso pains work we don't feel this.  It can also cause liver disease, my bloods showed some elevations.  Its just a thought but one to hold on too.  As for treatment, at the moment I have been instructed to go back on omperazole and two others that I just can't remember - Chemo brain.  So because of the Ultra Scan showing something else in my Bile Duct I also have to have a Barium Meal, haven't the date for that but I still think chemo has had a bearing on all this trouble.

Hubby was on the computer the other day and for some reason checked the time so he took a snap shot of:
I think he had a spooky moment to get it exactly on time.

The wind finally died down today and I thought I am going with the dogs today, I thought this as I went for a shower.  As I was soaping away I heard a thud on the shower door, it was Bear.  He hardly ever comes upstairs, I think he caught my wavelength and heard me thinking I was going with them.  He was all excited.  He kept coming in and out to tell me to hurry up.    He even waited at the top of the stairs until I got dressed, then when I was he came running at me, grabbing my hand then running between my legs.  I would hate to think I was shorter - I would forever be bruised.  It was a good job I didn't change my mind, otherwise when we came down the stairs I think he would have pushed me!

I said to Hubby I am always in the same coat for every picture you ever take but there again it is the warmest coat I own!  Bear stayed by my side most of the walk, which he doesn't usually do.

Then Lexi decided to do her favourite of running through my legs...

It's hard work when both her and Bear are trying to do it together, thankfully Bear didn't follow.  I couldn't believe how much water is still over the fields and how far the pond has expanded. Thankfully Bear doesn't bother going in but one day I think he might.

So that was our morning, we came back and I tried to eat, nothing at the moment is wanting to go down, I feel like I have a large lump at the top of my stomach.  Hope it will go as I can smell the Roast Beef cooking in the kitchen.

That's my news for the day, I hope when I wake tomorrow the tablets have finally got back on top of the bile and I feel somewhat better.  I am hoping that the bile is causing a lot of the other pains, that would be nice, instead of it being the Mesothelioma.
Christmas is so close I really must get out and do the small gifts, the chocs etc.  I always buy chocolates for the doctor's surgery and the chemist.  I have just finished writing out our Christmas cards so some of you may get them late (sorry!).
That's it from me for today, I hope that Steve is on the road to recovery from his chemo last Monday, Chris hasn't been as sick on his second dose - so things are improving there.  For Jimmy who was badly treated when rushed into hospital with pain last Sunday, they didn't want to do anything saying it was the meso, it turned out to be his appendix and they burst.  Doctors forget we are still human and can suffer from other ailments.  I'm pleased to say he is on the road to recovery but I hope his wife takes it further.  To the rest of the meso community I hope you are all stable and on top of the meso.
Dr A is still trying to get hospital's interest in cryoablation, please if you are seeing your oncologists mention his treatment, it may not cure but it can help.

Saturday, 15 December 2012

Cryoablation and Saturday's thoughts

After thinking I was having radiotherapy then ringing to find out I am in a back log I settled down to just having to think about the camera.  To be honest I haven't really thought about it, instead it's being knowing I have fluid on the left side from the meso has filled me with a strange hope that the pain in those lower ribs is the fluid and not thickening.
I am worried about not having chemotherapy, I think anyone would be the same, yet on the other hand I am relieved.  I will be able to spend Christmas feeling good.  Although I didn't have the full on side effects after no 2 which is worrying in itself.  I know I had a rough time with the stomach but my vision didn't blurr, my headaches weren't coming and going and I didn't have that I don't feel well but can't put my finger on it feeling - or is it we just simply forget?
Stupidly I am worried about the outcome of today, what if they need to do a procedure, will my body be able to cope with another invasive operation?  Yet I want to have a stomach that doesn't make me feel ill on a morning and waking up isn't an awful start to the day.  Strangely though they haven't been as bad as before I was violently sick with no 2.  One thing I have noticed is a new pain in my right breast.  I have them in my left so this is something new.  I can't feel any lumps which is a worry as it makes me think I have meso pulling on muscles on this side now.  It would be great if we got a good reading of our scans.
Dr A sent his comments back regarding my last scan, he also confirms everything is slow growing but I have new growth in front of the heart, could this be the same as the one I know about or a different one, the reason I say this is because he is worried about it breaking through the skin, therefore it can't be around the pericardium as that sits further back.  He would still willingly come to the UK and do me but is finding a hospital that will allow him.  Why do we get blocked by red tape?  He informed me that their department is setting up an International Training Centre - I can't see our lot going over and learning let alone bringing this service back. 
If I could get a couple cryoablated I would feel so much better in my mind.  You know my thoughts, debulking is important as one becomes two and two becomes four etc.  It also works for just pain relief and recovery is a lot faster than a few blasts of radiotherapy, no tiredness afterwards.  I know there are a few risks, like nipping a vein or collapsing a lung but overall there are risks in everything we do with cancer treatments.  Oh well pointless going there!
I found this photo of me just before chemo and I thought wow I look quite healthy so here I am looking somewhat at my best (meaning not in my dog coat, jeans and whatever else keeps me warm)
But boy we don't realise how we age do we!  I must learn how to apply makeup one day.
Have to shower and fill out forms, 4 hours with no food or drink, just re-read it says 6, hope the procedure is running late as I had a coffee at 7.30, oh well see what he says when I get there.  Just shows how bad my memory is.

Wednesday, 12 December 2012

Stomach Problems!

On Monday we discussed the possibility of chemo in the future, a very slim chance I can ever have it again and then under observation and probably a trial of sorts.  I was told that he could possibly administer some Alimta but at a much lower dose, no one to my knowledge has gone under 50% of their allocated dosage.  He said the side effects would probably hit hard but the treatment probably wouldn't do anything so was it worth the risk - No.  Hubby thinks he was trying to let me down nicely because he didn't want to sound like the man that said No.

I am, however, getting a blast of radiotherapy on Friday to that left breast, my 3rd boob hopefully will get a decent blast and stop paining me.  As he skipped through the ct scan he noticed an new growth inside my breast so hopefully the radiotherapy will stop it in its tracks.
Hubby and I both went to see the stomach man on Monday night, we believe hubby's is caused by stress, he has thickening inside his gullet, like a corn on ones foot.  He is under stress, I can tell by all the hard and dry skin around his heels and elbows, so it seems this is the same.  He had a quick feel of my stomach and then booked me an ultra sound, which I had yesterday.

What a nice doctor carried this out and found, to my delight it is what is causing the problems, what he thinks are stones in the bile duct.  They showed up white on his screen so fingers crossed they can blast them and that will be the end to my yucky stomach.  It could also be what causes the chemo to give me so much grief as it could be blocking part of the way to the bowel.
So I await to hear if Friday is on, I pray the radiotherapy will work and even getting rid of that one pain can benefit my quality of life.
On a different note we have decided to look for cruises next year, boy didn't realise how hard it was to find a cruise you like!  I had hoped we would do one in the start of the year but the little ships (which we have only ever been on) are fully booked.  Maybe it will have to be Dubai but hubby says I never eat when we are there.  Problem is it is too expensive to order a meal and waste it so rather than risk trying something I just don't really bother.  Mind the last time we went was when I was too thin, my eating habits have changed so much since then.

I must start Christmas shopping for those little things that make Christmas, now that I'm not having chemo I will be making an effort this weekend.
I hope Steve has a better week on the chemo than the last time and to everyone fighting this, Good Luck with your treatments and I hope the side effects are minor rather than major.

Sunday, 9 December 2012

Looking Back

Since the first dose of my chemo in November that rotten pain in my heart region disappeared, I knew instantly that the chemo was working, not only because of that but lots of new pains on the first night.  I mentioned the pain going for the first time to hubby a couple of days ago, telling him how great it was to be free of at least this one.  Last night it struck at 3 am,  waking me from a strange dream I also noticed how damp the covers were where they laid on that area.  At 5am I had to take morphine, I had catnapped between but the dream was the pain, my mind was trying to lock it up but it just would not go.  I would not be due for chemo until this Thursday, bearing in mind I have had 1 full lot and one lot of Alimta and half a dose of carbo I think my body is telling me that the chemo won't hold it back for long.
I could be totally wrong and singing off a totally different hymn sheet but back in 07 I started chemo, my kidney area was unbearable together with the heart pains.  I ended my Chemo in the Jan of 08 and by April the pains were back.  They were back a lot worse than before the chemo, so is my body telling me why struggle with the chemo if it isn't going to do anything. 

Our life just isn't our own, our thoughts are constantly battling not to include meso in them yet everything we do has a knock on effect with the meso.
I was speaking to Les, a meso friend, today.  She is a slight 5'4" and has dropped to 6st 1lb, she is trying desperately to gain weight.  Its strange with meso because nearly all of us have lost weight with it at sometime or another. 

Last October I remember how thin I was,  what made it worse was getting ready for a holiday and not being able to get the hairs from under my armpits.  That was a wake up call, I remember getting on the scales and being 8st 2, at 5'8" I was thin, I would probably have looked better if I had some toned muscles and a chest but I looked terrible.
At least now I have regained the weight and got myself a right fat belly, far too much sugar, but what do we do, stay too thin which isn't healthy or eat sugar which then doesn't help you in the battle to fighting cancer.

Tomorrow is the day I see the oncologist and discuss the path forward, if there is one.  I know my husband's feelings, he would prefer I don't do anymore chemo and I can understand his reasoning.  I felt the same 2 weeks ago but you forget what you go through, maybe that's why we can battle on.  Women give birth and they say the pain is terrible but they go and do it again.  That is one experience I wish I had had but it wasn't to be and no point moping over it.
Reading other's postings, Mesothelioma is still classed as a rare disease yet more and more are diagnosed with this killer cancer yet less and less seems to be happening in the way of finding cures.  I have been following a lady who believes there could be answers in alternative meds and I honestly believe that has to be true.  Within nature a cure is always there for something natural, look at nettles and dock leafs.  We have far less understanding of natures own cures than we do of chemical ones.  I don't want to take something that will keep destroying my good cells and makes recovery hard.  Already my brain cells are mush, my memory is so poor I can forget things in a few seconds.  It also raises the question of cost, more money can be made from something manufactured and patented than someone taking a drink from a plant.  Look at mistletoe, it seems to work for others yet when you ask an oncologist about it they say it doesn't.
I have to believe that the meso that resides in my body will now grow so slow and take at least another 2 years to start really doing any further damage.  I know things are changing because my 3rd boob hurts more, either its tagged onto another nerve or buried itself into some more muscle.  To be honest I would rather go under the knife again than take chemicals, but finding  surgeon who would be willing to take the risk to open that side up again is the problem.  I wonder if I lived in the States if it would be so difficult to find one, they don't seem that worried about re operating as we do here.
I haven't heard from Chris who is now on to the 2nd chemo of his first cycle, I do hope he didn't spend the entire time over a toilet since Tuesday.  You don't like to ring when someone is on treatment because I know I don't like having to chat to people when I'm in pain. 
A lady has had that operation where the nerves are cut in the back so she can get away from pain and using morphine.  I was just reading about it in Meso UK's quarterly and then a lady has done it.  I remember my pain Doctor from the hospice offering me it in May 09 but I was told by my surgeon if I had it and was still around in 2 years it would be a lot more painful as the nerves would grow back and misaligned.  I hope this isn't true but it would be interesting to hear what happens in 2 years with her pain.
Another lady I know who is 70 had surgery in October, she has the same pains I do, the iron cage around her ribs and constriction in her chest.  I for one, think she was very brave going through it but then again 70 isn't old and most are still fit and healthy, my mother in law still plays golf 3 to 4 times a week in all weathers and she's a couple of years older. 
Seems I'm rambling tonight so I will take my leave.  There are so many of us on treatments at the moment or awaiting news on scans just after treatment, this time of year always makes it harder. 
Which reminds me, I must start to get in the mood and buy some presents, we are going to have Christmas Day on our own for the first time since being together, I just hope it doesn't turn into Just Another Day.
Keep warm and out of the cold winds, don't forget those scarf's around your mouths!

Sunday, 2 December 2012

Fresh Air

I am still in the 'would I', 'Could I' or 'Should I' if offered just Alimta, but reading back what I wrote during the time I should be saying to myself 'No it won't be offered and if it is I would be crazy to take it'.
I was out today for the first time since Chemo on Thursday 22nd Nov and boy was it nice to feel the sun on my face, not nice feeling the cold air work its way down my throat.  Which reminds me, yesterday I did a stupid thing.  Gary dug out the deep fat fryer and emptied the fat out but left it stood on the work top to clean, (why can't they just finish jobs when started) after moving it from one side to the other for 4 days I thought 'If I don't do it now it will still be there at Christmas'.  I turned it on and forgot, when I remembered the fat was burning, of course I opened the lid and got a good blast of the burning fat down my throat, I swear it burnt the hairs off the back of it.  A lesson I have learnt, leave things well alone!  It took hours for the smell to leave the kitchen as well.

Back to today though, the fields were crisp with frost on the ground, the water was still quite frozen but no wind and I managed a good walk without the need of my inhaler.  Although Gary did drive the land rover down the first field, I think a hill to far was the thought. 

Bear was so excited that I was with him, as I kneeled down to take a photo of Lexi, Bear knocked me flying on my back then managed to stand on my chest.  I was totally winded by the big boy but his excitement grew and kept stepping over me so I couldn't get up!  Finally Gary managed to grab him so I could get up, but he was so boisterous and kept jumping up, no kidding when an 10 stone dog decides to spring at you ... MOVE.

Tomorrow I am going to venture out to the shops and try and do some Christmas Shopping, feeling a little guilty here as I should return to work.  I haven't had all the normal side effects from the Chemo and although I was hanging for them they didn't break out.  I wonder if this has to do with the anti-histamine they pumped into my veins.  No bad headaches or really bad kidney pains, had aches but not 'rolling around in agony' pains.  This is what is making me wonder whether this second lot has done anything, my breast is very painful as is the bottom rib, back to the normal pains not the chemo pains I had on the first dose.  This again is bringing back the worry that I need more chemo, which then starts the merry go round in my head again.

That's it for me, apart from the picture that caused Bear to flatten me.
This was her walk for a few days as the old girl was limping badly, I think she needed more rests than me today.

To everyone out there fighting this -  keep strong and well away from anyone with colds and flu.

Saturday, 1 December 2012

I know I said No but ..

If I hadn't had the reaction to the carbo and\or the Alimta and still received the anti histamines I think I would probably have had no side effects at all from the chemo.  I haven't had the really bad headaches, the kidneys aching, the double vision etc, maybe people who suffered like I did could try this as a help towards keeping the side effects down.
On Monday I told Gary that once over the stomach thing I would not reconsider chemo, even if  I am allowed just Alimta and to remind me of this statement because I know I will forget how bad things were and the fact that at times I thought I was going to die.
So On Thursday I feel like new, I think Ok it wasn't that bad, the lung nurse rang and said that carbo and any other platins would certainly be out of the question and she thinks Alimta will be too, in fact Chemo will be ruled out.  Thursday night I said "Maybe I should just try the Alimta, if allowed, to help fight the meso"  you can imagine what followed.  It's funny how we forget so fast what we have just gone through, what if it is both and I died, what if it did irreversible damage to my insides - where would my quality of life be?  What if I finally did have Renal failure.  He is right of course, I am just thinking of the mesothelioma and not the rest of what can and can't happen.
I am feeling pain like before, the aching under the armpit has returned, whereas after the chemo on 1st November these pains didn't come back, now they are here, my lowest rib is painful where the majority of the thickening resides, is it dying or growing?  My left breast is heavy and painful, is the seeding spreading? My back on the right is achy in three area's, its niggling and wearing me down. This cancer brings us to having to make so many decisions, and weighing up the pros and cons is so hard.  Now I am frightened that an half attempt at killing it could do the opposite and the bloody stuff has being ignited to grow faster. 
Your mind plays tricks on you, was it that bad really what I went through?  Maybe I am becoming a wimp and others suffer much worse (many with nausea) so why can't I just accept it.  I forget that my partner has witnessed me squirming around in agony for 4 days not knowing what to do, the worry of throwing up and bringing a lot of blood up doesn't help either.
Yet, for the first time ever, I went on Chemo when I was fit and healthy, I have even kept an appetite that after week one kicks in and I have eaten normally, a first for me.  The truth is I am scared, what if the oncologist says we can still try Alimta, even at 50% I know that I will want to go ahead and give it another shot, even though I promised I wouldn't do it.  I also know that I could be risking my life and upset my husband, he wants me to be alive for as long as possible but the risk of having a very poor quality of life isn't part of the deal and there are no guarantee's on this.  The stuff is very poisonous and until its in the system no one knows what will happen. 
I have no answers just so many questions running around in my head.  I am probably one of the only ones here in the UK who has gone through so many rounds with Mesothelioma, tried so many different approaches and to be honest have failed miserably because the damn cancer keeps coming back.
I received some beautiful flowers from the Meso Warriors, they made me smile and reminded me I am not on my own, that by each of us trying something or recording how we feel helps others who are travelling this same road. 
I am thankful that I have never suffered from sickness through chemo, I would have no idea what it is like but I know several who are suffering badly at the moment and I wish there was something I could do to relieve this.  Pretty much that magic wand to take away all our suffering.
All from up North, where ever you are I hope that meso truly is the last thing on your minds.