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.

Tuesday, 27 November 2012

Cycle 3 Dose 2: Suffering

I had hoped things would have improved once the chemo was done, but heyho my name is Jan and nothing goes my way.  The chemo has done its damage to my stomach, thick orange and yellow liquid like the consistency of beaten eggs yolks came up, the pain something worse than anything I have known.  Nothing would stop the pain, I suffered all night and then finally I managed to throw up this stuff, it eased for a while until it started again.  I waited until Monday to phone the hospital, otherwise it would have been sitting in a bed in agony with them unable to do anything.  May as well spend 2 nights in ones own bed feeling ill than in a hospital one.   The damage is now done if I throw up I am now bringing up blood.
 
On Monday I also received an email back regarding my email for more space for the chemo lounge, it made it sound that I had a go at the nurses and of course they were going to be defencive.  So I wasn't surprised when I rang at 10 than it was 3 hours later when I got a call back and then it was from Bishop.  Thank God for Yvonne, she was understanding, I told her everything I have taken, and to be fair she said there really isn't anything more they could give.
 
Having been unable to get comfortable all weekend by yesterday afternoon I started to feel some relief and insisted hubby got out of the house and took the dogs with him.  He needed a break from me, his adrenalin has been pushing through his system since Thursday and it isn't good for him to be stuck with me all the time.  I was pleased when he did go out, he needs fresh air rather than being cooked up with me.
 
Thankfully we live on a hill, you wouldn't think it but its a steady climb to our little village, the road of course is badly flooded as farm fields lead onto it.  Our fields where the dogs run around are flooded which the dogs loved.
This is normally just a field, no lake in the middle
The small pond in the back of the wood is actually now a large pond which has formed a river running right through the trees.  Having been awake most of the last 3 nights I have listened to the storm and as usual thoughts aren't good in those black hours.
 
We have lost a number of mesothelioma friends over the last week and it is becoming too depressing, I know that I will never be able to have carboplatin again and I also feel that Alimta is out of the question too.  Bearing in mind I dropped Carbo in 07 and the Alimta still destroyed my internal organs. 
 
I fully understand that logic now of life is important.  Maybe I could risk another dose but at what cost, I have suffered from rotten insides for all these years, to the point of I was finally getting it a little better only to knock it back again.  Will my insides recover I don't know but I don't want to spend each morning back in this pain again. 
 
I have to hope and pray that the meso has taken a hammering and what growth is there has been knocked back giving me at least a couple of years.  After chatting yesterday I think I will also knock the scans on the head for a while too, whats the point I know my insides, why confirm the growth it only brings about the need to want to kill it but as I haven't got many options, sorry no options left, maybe its better not knowing.
 
I hope and pray that something will be found to stop the dividing of these unnatural cells soon and this will then put an end to the many deaths we have through mesothelioma.  Also I hope its in time to save me.  I am still quite young, a mere 52 and not ready to die.
 
On that note I guess I should try and get a shower, moving around hopefully gets the stuff moving through my gut.

Saturday, 24 November 2012

Reaction to Chemo Infusion

You just know things aren't going to go well, its an instinct inside your guts that pushes right through your body.  After taking the steroids on Wednesday, another bad night of sweats and not sleeping, Thursday was chemo day.  My temp wouldn't get over 35.7 but the chemo went ahead, even the nurse double checked it, and I told her it would be right, as it had hardly risen from that point for the last 3 weeks.
 
Having had difficulty getting the needle in, first the right arm with ten minutes of fiddling the thing to try and penetrate the vein we moved to the left arm.  Agony in both from needles!  The fluid started to drip.  I was itchy throughout after the steroids went in, my back the worst.  Then the carbo was started, I couldn't explain but I didn't feel well at all, then suddenly this awful feeling just below my heart and my lips were burning, my face was beetroot, my arms swelled, my stomach swelled and the pain got worse.  Gary called the sister and before we knew it 3 nurses and 5 doctors were in the room.  It was terrifying to say the least, my arms were increasing in size in front of my very eyes, I wanted to rip my bra off as I felt I was constricted, but there were people around.  Oxygen mask was the first thing put on, bp was high, heart rate extremely high and oxy very low.  Not a nice experience.  My only thoughts were thank god I didn't push and have this at home, I would surely be dead by now.
 
We don't think of the chemo going in as a problem, only once it is in.  I have learnt a valuable lesson, this stuff is extremely dangerous.  My concern now is what of the future.  Will they try with just Alimta or is this the end of my chemotherapy, and if so ... then what?
 
My insides today don't feel good, that stomach may not hold this time around, it came close last time.  Today, and its only Day two, it feels irritated and getting a little angry when fluid goes down. 
 
I didn't have any bone aches during the night of Thursday and can only hope that what happened on dose one has done the trick.  I am afraid now especially if that is the end of the chemo, although in a dream last night I heard someone tell me I needed to go on a trial. 
 
I was also naughty yesterday and dropped the steroids, just in case they had helped push the chemo into the allergic reaction. 
 
It's getting through the next week that is important now, we all know how that goes, I am so angry at having this cancer, I am still only young, to young in my books to die from this.  52 is no age in today's world, I have to have faith that the drugs I have had will work and hopefully keep the meso at bay for a while longer. 
 
The other worry of course is the build up of pain, the bigger the meso the worse the pain, I don't think my body could honestly take any more than it already deals with. 
 
I want good news, so many warriors have died over the last few weeks, it makes me feel guilty for still being here after all these years but terrified that my number is coming.  What a way to live, it isn't fair that we have been dealt this card, a card that isn't even our fault.

Sunday, 18 November 2012

Weekend Gone

Its been an interesting week where blogs and postings have been made.  Linda wrote a good one about the new support group that has been set up, sounds very interesting and hopefully it will carry on to be the same.  Amanda has written more on new trials, Mavis has been doing a few talks with Doctors and Specialists and Debbie is in the waiting for Scan mode.  On Face Book someone wrote they had been cured from Mesothelioma, sorry and all but I don't believe there is a cure and no one should post such an outrageous statement, it also coincided with the release of a book she has published, which left me feeling a tad suspicious of her reasons.
 
On the home front I have had a week of up and down, feeling healthy one minute and totally wrecked and in pain the next.  The flash headaches and concentration being one of the worst to deal with but those terrible mornings have returned.  Not only with my stomach feeling much worse but everywhere where my cancer resides has hurt too.  Hubby's suggestion take morphine, I on the other hand am trying to keep my kidney from having to work overtime and won't touch it.  Take yesterday, I felt dreadful when I got up, pulled round with coffee and computer then went into work for an hour.  I came home feeling the same but instead of sitting down and relaxing I baked.  I can't let this mesothelioma or treatment take control of my life again.
 
Today the air was still, no mist but a good ground frost so after I took 2 hours to pull round and get my aching bones moving we took the dogs over the woods.  Any form of exertion makes my nose run, I wonder if this happens to anyone else?  It even happens when I'm baking, having forever to keep blowing my nose!
 
Bear didn't find any pheasants to chase but the scenery around the woods today was beautiful, the rich greens of the grass, the browns and reds of the trees.  We have set up a few bird feeding places among some of the trees, seems a squirrel had a hard time trying to get into the nuts and pulled the feeder off the tree, unfortunately the top stayed insitu so he gave up, leaving his scratch marks all over the lid.
Bear gives me the hump if I haven't been on a walk with him so no doubt after today I will be back in the good books, fingers crossed. 
 
I have made an appointment with my GP for in the morning, I hopefully can discuss my thoughts and anxieties about the chemo lounge and the fact that I can't lie about using elma cream.  If I am to go private I need to get this set up in 3 days as I don't want to delay the chemo for a week, not while I am still in pain and believe the poison is truly doing its job and killing all those nasty meso cells as they divide trying to make more nasty meso.  If I was right and when I had the last one my body was starting a session of growth then I hit it where it hurt, unless, and I really shouldn't air this, it has the opposite effect and the meso gained strength from the chemo.  It is hard, my oncologist is fighting to save the NHS and on Monday afternoon I will be seeing him about the next dose, I will also raise my concerns with him too. 
 
I do want to bring about change, change to the lounges we have, after all Bishop has plenty of spare room, it keeps closing wards or moving them around.  The other problem is if I do complain will it make things worse, as I believe when you say something negative about a hospital or staff they all turn against you.
 
If I do go private again and require more treatment further down the line I doubt I will have to fight for it like I did for this 3rd line of chemotherapy.  Decisions, why can't our lives be made easier when we have this to deal with instead of being made so difficult.
 
Our Lexi has been naughty again and peed in the lounge last night, not that we knew until Gary stepped onto it.  Bear came upstairs at 7 to get me up because Lexi was crying to go out, as soon as I opened the front door she was out on the garden so I never gave it a thought she would have done anything in the house either.  No I didn't stay up I climbed back upstairs and went back to bed, although I had to take a puff of ventolene because the cold air and the stairs had knocked the air out of me.  Yesterday Bear got hubby up at 6 because Lexi wanted to go out then.  I hope this isn't a sign of things to come with Lexi, after all she has been on those tablets a long time and they can cause problems to her organs. 
 
I wish Chris good luck, he was told several months ago he only had 3 months to live and to put his things in order.  I told him to go and see J Steele, surely there could be something, so tomorrow he starts on IPM or IMP, memory isn't working.  The only problem is he has to travel to London, stay for 2 nights, one the night before and one the day of chemo, then come home to travel again in 2 weeks for another drug, then back again the week later to have the first two again.  Its a lot of travelling when you are on treatment and feeling ill, I hope the treatment works for him and he doesn't suffer to badly.  This is what I mean about trials or other combinations, why we can't have satellite hospitals that will administer the drugs on behalf of the main trial centre or a different oncologist is beyond me.  They want people on trials but getting to them isn't that easy, especially if you are ill.  Mavis and Tess went through this when on a trial earlier this year.
 
It's Denise's funeral on Friday at Yeovil Crem if anyone would like to attend, although no wearing black, its a celebration of her life.  My thoughts will be with the family, unfortunately I will be into Day one of Chemo.
 
I guess that's it for today, I truly hope many of you are staying in that Stable bracket and for those who are on treatment along with me, lets hope we tolerate it a little better this next time round, I know Steve is in tomorrow for no 3 so my fingers will be crossed for him.

Friday, 16 November 2012

After effects or Normality?

Its two weeks since the poison entered my body and I still feel as if I am suffering from the side effects, but not sickness or ulcer etc, although I have a pair of lips covered in cold sores.  My shoulders ache, my neck aches, my chest is heavy and hurts, my boobs - well I just don't want to go there. 
 
I am still tired, although I have been a little busy this week, popping into work, having a couple of meetings etc and going to healing.  A little bit of a cold is lingering in the background too.
 
I can't remember whether its normal to still feel this way, I hope it passes once the chemo stops because the thoughts of living with this additional painload isn't an exciting prospect.
 
I am on the edge of deciding to go back private for my chemotherapy, my works insurance covers me for this, but then I wanted to have an MDT team and going back to a private oncologist will lose this, although I'm not sure whether I have a team or not.  If I go private I can have the chemo at home, back up isn't there if something goes wrong as I would still need to go to hospital, but at the same time I have a nurse on the end of a telephone at all times. 
 
It is a tough decision, brought on only because of the cannula and the dreary room we have at Bishop Auckland.  I left a message with my NHS oncologists secretary to ask if I could receive the chemo privately but still see my NHS oncologist to ensure things were ok, she told me he is fighting to keep the NHS and doubts he would help.  I can understand this, I don't want to lose the NHS for anyone, in fact I think a lot more money should go in to it, but at the same time they should lose a lot of middle managers and top ones, bring back ERN's and have Auxiliaries do the duties they did before.  So much waste and the patient and working staff always lose out.
 
As we drove back from hubbys appointment last night it dawned on me that we had to fight for this 3rd line of chemo, he said radiotherapy would probably be out of the question due to cost etc and that trials would be the only thing open to me.  Well if I go down a trial route I don't see him as an oncologist, if this doesn't work he isn't going to offer anything else so why do I need him?  Questions that I have no idea who to get answers from.
 
My chemo is next week, so if I am to do something it will need to be arranged Monday or Tuesday, I don't want my chemo day changing as it hits well if I ulcerate, unless, of course, it is a Friday which gives me a guarantee that I won't be bad on a Saturday or Sunday.
 
Whichever route I go I know I will question it, but then not many oncologists really do want a mesothelioma patient on their books, we cost quite a bit and we can't guarantee we will stick around for a long time.
 
 

Tuesday, 13 November 2012

Changes!

I have no idea what I did but I lost my layout for my blog!  I can't retrieve the colours that I had or the background.  Warning to all - never go into something that isn't broken!

Sorry if these colours don't do anything for you, not sure what to do now, my blog has always been a pinkish colour and to go totally different would throw those who have become use to it.

Please let me know what you think of it, if its unbearable to see these colours and it puts you off reading it I would love to know.  In the meantime I will try messing around with it until I can fix it.

Sunday, 11 November 2012

Staying Alive

This week has brought many thoughts flicking through my mushed up brain.  The most important is the fight to stay alive as long as possible.  Reading that both Denise and Jo have died from mesothelioma this week hit me like a double decker bus out of control, especially more so with Denise. 
 
I spoke to a fellow mesothelioma suffer, Chris, who was diagnosed with me back in 04.  I sent him to J Steele because again he was told there was nothing out there for him.  He has had Alimta and Carbo 3 full cycles now over 8 years.  His meso is hanging from his aorta, a 6 inch mass, which reminds me of the set of curtains I had hanging from my lung back in 04.  After my cryo in 08 I tried to get Chris to write to Dr Abtin but his oncologist said it wouldn't help and that was that.  I am hoping that if Chris gets shrinkage again he will reconsider this as an option.  After all Dr Abtin was 1mm away from my aorta back then too.  Dr Steele has recommended the IPM course of chemo and I pray this will work for him.  He may be 70 now but he certainly doesn't feel it - again why should he be given up on?
 
Amanda too has done some amazing research and posted it on her blog, they keep telling people this is rare, it isn't as rare as one would think.  Together with Linda (Doing something Positive) they have both raised valid points.  It may be rare to community hospitals but Mesothelioma is a rapid growing cancer with more deaths per year than road accidents.  Yet we hear road accidents can be prevented, what about deaths from this cancer - surely they too can be prevented!
 
I feel so alive today, vibrant and energised, I don't know whether my body is going through some mammoth change and kicking the meso out (that would be a big answer to my prays) or I have been instilled with how important life actually is.  I journey from one day to the next and never think the next will not be there, this week has proved that, more so with the rapid decline of Denise.
 
I was also contacted from a company that deals with removal of asbestos, they wanted to use one of my blog pieces in their newsletter to show to employees why there work it is so important.  I am pleased that I was able to help.
 
There is nothing out there that prepares us for when our oncologists say to us "Sorry I don't know what else to try, just enjoy your time left".  To date I have had this in 04, 08 and 12, seems every four years - I hope by the time 2016 comes around there are more options out there.  Chemotherapy isn't pleasant, in fact I think its the worst thing in life to go through, but if it keeps me alive then I should have the right to keep taking it.  I don't understand why we are so far behind the USA.  I know we are following them in this terrible Claim for everything but there doctors are still willing to give things ago.  They don't see Mesothelioma as a death sentence, they see it as a challenge, why can't we?
 
Well that's my thoughts for today, neither enlightening, heartbreaking or moaning, just ramblings from someone with chemo brain.
 
Good luck to all the meso warriors - yes that means you - everyone with this cancer is a warrior and lets hope change is around the corner.

Saturday, 10 November 2012

The Loss of a Friend - Denise

Many who have mesothelioma don't know anyone and like to keep it that way, in my early days I tried every forum to find someone else with this cancer but for years no one came back.  Then slowly I started making friends and have kept in touch through the good and bad times of this terrible cancer.
 
On Friday at 2.00 pm a friend from my blog and then facebook died.  I can't believe it was only in April this year she was diagnosed, the growth was small and within 2 weeks of being diagnosed she started chemotherapy. 
 
Denise was frightened, I know we all are, but she was sure she would die.  We all tried to reassure her that this would be a long way off, how wrong we all were.  I got to know Denise quite well over the months, speaking quite often on the phone, her sense of humour was a strong point and she did make me laugh but she could not shake this fear of dying.
 
The standard regime of chemotherapy didn't do anything to halt the growth and like many before her, she went to Barts.  A new regime would be used, unfortunately Denise took ill before she could try anything further.  No one will ever know why it happened so fast. I am pleased to say that over the last few months she did so much, visiting places with her family, indeed you could never find her at home during the day, she was always out and about.

I was lucky to meet Denise and her partner at the Conference in October, I am still shocked that four weeks later she has died.  The one blessing is that she didn't suffer, pain had stayed away for most of the time, but that is no consolation to her family.

We just never know, we think we have become accustomed to this cancer and we expect everyone to live a lot longer than a mere 7 months, this has been a big wake up call to the mesothelioma community as a whole and to me personally.  Another tragedy that should never have happened.
 
I hope that her family can find solace in the fact that she didn't suffer but to lose a parent who was young and vibrant is a cross to heavy to bear.

Rest In Peace Denise.

Wednesday, 7 November 2012

Interlude - we are at war!

As I am slowly destroying my good cells and hopefully killing  the nasty meso ones it brings us to the time of recollection.  I am putting myself through the infliction of poison that I know will bring my body to its knees, if I was a serial killer doing this to others I would be locked up and labelled a grotesque killer, one who pours pain and suffering on those affected.  Yet I am an innocent in all of this, as are all those who have gone before me and those, unfortunately, who are to come.  Do I want justice, you bet. 
 
What enjoyment has asbestos brought into my life?  If it was from smoking, then justifiably I am to blame, even though when I started, smoking was something you did to be an adult (stupid but true in my youth) and people weren't warned of its dangers.  Its like over eating, being obese, self harmed by today's adverts to eat fast food and caution to the wind on what it does.  But asbestos, what did it do for me - apart from give me this painful death sentence.
 
I have just had a conversation with hubby, he doesn't think that fighting will ever get us anywhere, kind of it isn't our battle, but it is.  If it wasn't for people like Chris Knighton or June Hanncock this cancer would still be hidden away and classed as a rarity among those under 75.  We need to join together, we can't teach doctors about medicine but we can help them understand a disease that rips at the very heart of yours and your family's life.  In fact, as I wrote many times before, this was an old man's disease and in the eyes of the politicians and NHS was it really worth spending money on, the people targeted were no longer paying into the system and would probably only have a few years left anyway.  But these people had paid into the system, many probably fought the war to keep us Great Britain, yet they were cast aside by money and greed.  It is still happening today, research into mesothelioma is still the lowest, where does all those millions go raised by Cancer Research, surely there are enough breast chemotherapies out there, bowel cancer has a good success rate (if the doctor is on the ball and diagnosis correctly).  Many are caught soon, yet meso, well it sits and sits and then suddenly you are terminal with what they say 'little chance of survival'.  Had I listened in 04 I doubt I would be here, there were 4 of us diagnosed around the same time at James Cook.  Two of us are still living, both are now battling again for our lives.  So in averages that's 50% survived 8 years since diagnosis, that kinds of throws their statistics out of the window.

Chris, who was diagnosed with me, told the doctors on several occasions he had worked with asbestos but they didn't listen, it took him 6 months for the diagnosis.  Why didn't they test him the minute he told them about his work with the stuff, they choose to ignore it and probably wasted money on trying this tablet or that before finally doing a VAT.  I wonder sometimes if they just wish we would go away and die, saves them spending money on us that could help someone else who is cureable. 
 
An arguement thrown in by my husband as I showered this morning.  If an oncologist has say £10,000 is he going to treat two breast cancers, who can survive, or one with breast and one with mesothelioma who will likely die in a few years.  Is this what we end up being, a spreadsheet of where the money should go.  What about all my tax and Ni, all those out there who have and are paying it.  Our Governments (all sides) are so liberal with our money on aid abroad, immigrants, free housing and poverty limits, yet come to a cancer created by man  (which made companies a lot of money),  it seems we arne't worth saving because it doesn't look good on the books!  Lets see, if I had died in 05, thats 8 years worth of tax and NI the treasury would be without, say I only paid in £15,000 thats £120,000 for 8 years, times that by the likes of those meso patients who still are alive and like me working, thats a lot more than the one treatment of chemo it has cost.  In my case this is the first chemo the NHS is paying for.  Ok I have had other treatment, 3 surgeries in all on the NHS. 
 
See I am prepared to fight, I probably already have a bad name among the peers in the NHS, but I am not bothered about just me, I fear for the future of us all.  I don't have children (probably due to the bloody meso attacking when I was pregnant) but I have nieces and nephews, I have friends who have children who are dear to me.  I have friends that I hope never have to face this with their own families and I have many friends who are facing this now, and friends who have lost the fight.  Yes Cancer isn't the big scary word it was in 1970 when you really did die within a few months, but that's a natural cancer, this is a cancer created, a fibre that can not be destroyed. 
 
I am calling Researchers, find a way to break down its dna, you found how to do man's, find the thread that can lead to the destruction of this little fibre that can't be expelled from the body because of its unusual design.  Cancer UK give us more money, instill around the country that we need trials ran in every county, and not from drug manufacturers, from our own universities.  We are supposed to have brainy children these days, then why aren't we using them, we have computers than can create imagery and help break down pathways a lot faster than by pen and paper.  Lets get trials ran concurrently, so everyone can have a go, lets make it easy for mesothelioma sufferers to find out what is out there and update the oncologists country wide what is available.  This is what Cancer UK should be doing, breast cancer will become a thing of the past, mesothelioma is and will be a thing of the future.
 
On a strange note, in my dreams at the moment I want to dig a tunnel to my sinus, my mind is convinced that this little fibre is stuck in there and sending its deadly virus into my chest.  Maybe I am going mad but I wonder could the thing be looming in there? 
 
And lastly as I take this interlude, every year since 05 hubby has made a bonfire night, this year, as with previous ones, I was on chemo so he brought the old bin down to outside the door and insisted I still had a sparkler to play with.  I am hoping next year I will be back up the top, eating hot dogs (which I hate but love the smell of) and baked potatoes while watching the fireworks explode in the sky. 
 
 

This is to remind me to stay strong and ensure I am still here for next years.

To my friends who are currently going through chemo and those who are getting ready to start the terrible journey again, I salute you.  To those on trials - you are my hero's.  To those who have no understanding of what it is like - learn about it, you may not be so lucky later down the line.

Monday, 5 November 2012

Cycle 3 - Dose 1: Days 1-5

My heart goes out to anyone that has to cope with chemo of any type, especially those who live on their own.  We know nobody can actually make us feel better, it is truly a journey we have to travel inwardly on our own, as is anything that causes pain. Yet just knowing there is that hand to hold makes us feel a little better.  It's at times like this I feel the most guilty about my mam living on her own those last few years of her life, not that she was on chemo or had cancer, but if she was afraid no one was there in those long night hours.

When my heart goes into meso fallout, I look to Gary as in expectation of him being able to help, I know he can't but we think some one can help, it's a natural human feeling.  I am giving him all those good signals that all is well, I can get through these 10 days because I have done it before, just wish these days were over.  Then we start again, our own fear of feeling this bad forgotten until it starts again.

I seriously can't believe patients can walk through chemo with only the odd feeling of sickness, my body hurts in places I didn't think could put out as much pain.  My kidneys are really doing everything they can, pushing that poison out but boy do they hurt.  I won't take any additional pain killers because my kidneys have to deal with the fall out, so these bad headaches will have to stay until my kidneys stop hurting.  I hurt and moan, I can't express how my body feels, a severe flu but without having flu.  I want to rest but find it difficult to settle, I could read but my eyesight is playing up plus headache makes it a no no.

It is so annoying when you want time to sort stuff out you never find the time, when you have the time it's usually because you're under the weather, therefore can't be bothered.  Back to afternoon tv and quite possibly a nap.

Keep strong all other chemo participants, I hope this journey is an easier one for you to travel.

Thursday, 1 November 2012

Cycle 3 - No 1 after 5 year break

Started the steroids yesterday and already made a big mistake.  I took the first one at 9 am and then somewhere between 6 and 7pm last night.  Went to bed at 10.45 and felt ok, a little warm, which is unusual for me as I am always cold these days.
 
I woke up at 1.15, the end of the bed where I was snuggled too was soaking as was my full body, I got up and dried off, back to bed then it was around 2.45 and it happened again, I got up towelled down and moved further into the bed to the dry sheet area.  At 5.15 I was soaked, my heart didn't feel right and I had to wake Gary.  He went and got the thermometer, my temp was 35.3, a meso attack, adrenalin was starting to pump through and I couldn't settle.  Temapazam to help knock me back out and slow me down.  I was back into the I don't think I can do this, its those times at night when you feel bad and there isn't anyone who can answer the questions, yet you know the answers already but it doesn't help.
 
Anyway I was ok and went into work this morning for a couple of hours.  We got to the hospital 15 minutes before I was due and we waited an extra 15 minutes over our time before I was called.  The place is dreary, worse than James Cook.  Two main rooms where you sit the entire time of infusion, seats face each other with about 3 foot of floor space between, 6 chairs each side.  I went in and asked if Gary could come too, they said he could only stay with me while I had the needle.  They changed their mind a little later and took us to a side room.  Then I got in to trouble, I had elma cream on both hands numbing my veins.  This is not allowed here, there nurses will not put chemo into numb veins in case they don't have them insitu and damage the tissue.  In the previous infusions (11) I used it on 10 so I can't understand their problem, if the needle wasn't in right the first flush would show the problem.

So I felt my eyes well with tears, I couldn't face the cannula without the cream or they would need to sedate me, she said she couldn't sedate me because I wasn't written up for it!  I just wanted her to stick the bloody needle in.  I said I couldn't do it, she was more interested in who told me I could use it so she could report them for giving out wrong information.  What about me, the patient, who was becoming stressed!  I went for a walk around the corridors so I could try and get myself cooled down.  I went back, she soaked my arms in hot water then got the cannula in, must admit it didn't hurt as bad as I expected.  I have had some terrible experiences over the years and I mean terrible, considering what is to come this bit should be a walk in the park.

Thankfully we took ice in with us, unfortunately the thermoflask wasn't leak proof and soaked everything in my bag!  No ice or water brought, even though that was written up on the notes, what would happen if Gary wasn't with me?  Two nurses on today only, yet the Monday when no chemo they had 4 nurses on duty and two record nurses, unbelievable.  Also my specially made drink for my exploding stomach wasn't there, nor was it written up to be here.  Things can't get any worse can they.  I am honestly thinking of doing that Cancer at Home again, at least you can speak to your oncologist or a nurse pretty much easier than the NHS.  But then I will lose having an NHS oncologist after the event.  There is no easy decision when you are battling cancer unless its breast or bowel.  There was also another lady in the chemo room, she was on alimta and carbo I asked her if she had meso she said she had a lung cancer but didn't know the name.  It can only be meso I wonder if she has been fobbed off.  She was around 76 maybe 77, had an operation 2 years ago but the cancer has come back, I couldn't ask anymore as we were moved then.
 
On our way home we stopped off at the chemist as my back was already itchy, together with a little disturbance in my lady bits and I am peeing for the whole of England.  Plus that itchy bum...
 
Gary read the dairy from when I was last on chemo in 07, he told me he wished he hadn't because he had forgotten the amount of side effects I went through then and he felt helpless then, he doesn't want to feel that way again.  I told him that as long as he is by my side he is not helpless and I have already apologised up front for anything that may happen and thanked him for being by my side.  It isn't easy for our partners, we may go through it but they have to endure it.

On a better note, Steve has done better on his second dose, I hope that continues.  I still can't understand how some can walk through chemo without any problems while others can be so ill and others have nausea and tiredness throughout.  It is a strange thing to poison our own bodies but after last night I truly believe I have started on the right day, my meso maybe starting a growing spurt so maybe the chemo may just kill it in its growth pattern.
 
To everyone else who is currently having chemo, good luck, to those coming through surgery I hope the pain isn't unbearable and those who are stable please please stay that way.
 
I will probably be updating this regularly, keeping you informed of how chemo affects me, this is after all my own record of this terrible journey that none of us should have to endue.
 
On a political front, we have to fight for our future generations, more will be diagnosed with this cancer and a lot more will be younger.  My brother told me today that my old school was built with asbestos and that was a new school opened in 1970 and my infant junior school was full of asbestos, they are all still standing today.

Tuesday, 30 October 2012

Asbestos Safe - What an Idiot

Yesterday some idiot who represents us stated that Asbestos is safe.  I've tried not to be political on this site, hence I started my other blog but didn't keep it up to date because so much of what goes on in our government drives me mad, I would end up writing everyday.

I received a notification yesterday from CNM Training Solutions which had this:

GMB CONDEMNS EAST MIDLANDS UKIP MEP FOR EU AMENDMENT THAT IGNORES THE DANGERS OF WHITE ASBESTOS
This amendment flies in the face of scientific evidence from the World Health Organisation, United Nations Environment Programme, the International Labour Organisation and the International Agency of Human Carcinogens says GMB
GMB condemned the attempt by Roger Helmer, UKIP MEP for East Midland, to amend the proposed motion in an EU Committee on improving safety measures on exposure to deadly asbestos fibres in the EU by inserting clauses claiming that white asbestos (chrysotile) is not dangerous. See notes to editors for details of the committee and the text of his amendment.
Craig Stuart, GMB Regional Health & Safety Officer for the Midlands & East Coast region, said“This amendment from Mr Helmer flies in the face of scientific evidence from the World Health Organisation, United Nations Environment Programme, the International Labour Organisation and the International Agency of Human Carcinogens. See Notes to editors.
Not content on moving parties when the prevailing wind suits him and being a climate change sceptic Mr Helmer is now denying scientific evidence that exposure to all forms of asbestos is dangerous and can be fatal to humans.
This is not in the interests of his constituents where family members exposed to white asbestos in the course of their work have suffered in agony and died from asbestos related diseases.
GMB will encourage members to contact Mr Helmer to make clear their own experience and views on this serious issue and ask him to drop this foolish and dangerous amendment”
 
Please lets get to work and tell these overpaid under representing of the people what it is like to have mesothelioma or any lung disorder caused by asbestos.
 
This isn't just my fight but yours also.