Saturday, 30 November 2013

Injection Again!

I haven't done much the last couple of days, after shopping on Tuesday I was pretty worn out on Wednesday.  Thursday seems a blur, I did a little work but not a lot.
Yesterday morning I woke up feeling terrible, again!!!  Am getting fed up of this I should be improving not going downhill further.  My shoulder has gone again, bone on bone so thankfully I was able to make an appointment next week with my physio although I wish it was today.  I couldn't take the pain so texted my brilliant GP and asked if he could come and give me another jab in my bum. 
On Thursday my DN came together with my MacMillan nurse.  We discussed the large breeze blocks that I call feet and decided maybe my heart should be checked again.  I have arranged to go back and see Prof Murphy.  The problem being I will be given Diuretics which affect your kidney and as I am on chemo I don't think this would be a good idea.  But it can explain more of the breathlessness, I would rather it be my heart than the meso growing any day of the week.
I have asked her if she would be interested in doing the Mesothelioma Practice in Cancer Care and I think I raised her interest.  Although she will have to go through the trust to see if she can apply for it.  I think my MacMillan would be good at caring more for meso patients, she just has a way with people.
Anyway Friday, feeling pretty crap as I was turned out to be a busy afternoon.  My toe lady came, and although she couldn't dig my nails out, in case she cut me, she managed to sort them out pretty well.  Then Joyce arrived and gave me a foot and lower leg massage.  I was so tired I could have drifted off, just as she was doing my shoulder, trying to ease the pain my GP arrived.
After telling us a little about his holiday he then gave me a nice painkilling jab in my now bigger bum.  It didn't hurt as much as the last one.  The relief came some 20 minutes later, it didn't take it all away but thankfully the pain on breathing eased.  Funny how your shoulder can make breathing hurt!  He said I did look better than before he went away, pleased I was eating crisps because they had calories etc.  I did tell him that this chemo was a walk in the park compared to Alimta.  I also apologised for having to call him out, I must be one of his worst patients, because I contact him directly and bless he always looks after me.  He has promised to drop me off a spicy indian recipe for chicken, as I told him I am craving spices.

I have bloods organised to be taken on Monday so just hope my WBC has come down some and whatever is going on inside me has cleared.  I did mention this to the doctor, hope he has a look at my results and comes up with an idea.
He left and so did Joyce as I was getting tired, I checked my phone and noticed I had missed a message, my best friends daughter was wishing to call in.  I rang her back as my phone couldn't deliver messages to her, odd!  She was 10 minutes away from ours so I thought she's made the effort come on Jan, wake up.

It was lovely to see her, its been quite a while since she was last up.  She stayed for an hour then was going to go to the gym, where do these young ones get the energy from.  I felt so tired that my eyes were going to close but Gary had dinner on so saying Goodbye to Tash then into the kitchen to see if he needed me, no!  Good so I went back into the lounge.

The pain in my shoulder was steady but my chest and right back started to increase in pain so I took some morphine.  This made my eye's worse but once I had climbed the stairs to bed and couldn't catch my breath I was wide awake again.  Why does that happen.  My chest felt like it had been shrunken again to only a couple of inches and no oxygen was getting in.  Somehow I managed to nod off and didn't get up till 8.45 this morning.  A lie in yeah!

I listened to the replay of Jeremy Vine's show this morning regarding the school teacher and mesothelioma.  I thought it didn't cover very much and was highly disappointed.  Usually he gets a good debate going but I thought this was flat without enough information regarding the dangers of asbestos. 

If you want to hear the discussion go to approx. 1.08 on the time slide here

I have sent him an email asking him to do another debate, they need to cover more, and discuss the use of it throughout the world.  Asia is rising in its use of Asbestos, how will we track we don't get it into products in this country?

Our community has had a few more deaths this week, the worst time of the year to lose people, although any time is, but around the holidays makes it that much harder. 
A lady emailed me the other day, reading what she wrote brought back the memories of my own beginning with meso.  Her husband hasn't been diagnosed with this but his symptoms are the same as mine were.  She was told that meso doesn't affect people in their 40's, what is wrong with our doctors, in fact one had never even heard of the disease.  This is frightening in this day and age, how many more are out there undiagnosed when if caught early they could have a good chance at a long term remission?
If you have any concerns regarding mesothelioma and need more info please contact Mesothelioma UK, they can help guide you to the right people.
On that note I am closing the blog, my body is soaked in sweat, not sure whether its the meso or the chemo causing this today. 
Have a good weekend and enjoy the last day of November.

Wednesday, 27 November 2013

Shopping for me and another Sad Day

A while back I ordered some oxygen on line, when I had my chest infection, and sometimes I do need to still use it.  Especially if I have walked too fast from one room to the other or gone to the front door to answer it, only to find its the wrong door they have rang the bell!  At first I ordered a full set and a spare then as I am now using the spare I ordered another full set, to keep upstairs by the bed.  The moment I set it up I knew something was wrong as I couldn't hear any oxygen come through it.  I emailed the company and to my surprise they just replaced it, no qualms about whether I had ran it dry or not.  Not that I had, I just opened it and pressed the button.  So now have two again, one up and one down. You see going out I carry it and being a small little bottle it fits in my handbag and now one knows I am carrying it!
Yesterday morning I honestly didn't think I was going to get to Stockton with the girls when I woke up.  It was the first morning for a long time that I had felt so breathless, even sitting in front of the computer I found it hard to catch a good breath.  Typical I thought, well I'm going out.
I also had terrible tummy ache but by the time the girls arrived my insides had sorted themselves out, quite a few times - probably due to the chemo.
I showered and my dressing got wet, the tape where I fasten my tube up on a night had torn the covering, just before I was ready to go I felt a damp patch on my top.  So with Gary turning the other way I swapped the dressings then he put the new plastic cover over.  Neither of us like looking at the pipe sticking out.  The skin felt a little rough, probably because the sponge had got so wet and had irritated the skin.  Shame I hadn't noticed this straight after the shower, it was some 2 hours later.
The girls arrived, the car was nice and warm and off we went to Stockton.  I must say I was pleased Chris was driving as the roads seem to have changed again.  They are redeveloping Stockton, about time, but it is a hit and miss centre.  Part has an industrial park, then you come into the main street but all new traffic lights and roads.  I remember Stockton high street as a child, it was a treat to go there, the market on a Saturday stretched as long as the main town centre road, the shops were always busy, now its quite run down, but hopefully the changes being made will revamp the area and make it a place to want to go again. 
She dropped Lorraine and I opposite Debenhams and we slowly walked to the shop and waited while Chris parked up.  I was surprised at how large the store was.  We ambled around the ground floor first, mens wear, Christmas gifts etc then went for coffee.  We had a spot of lunch, I had a turkey sandwich and they had soup, although I couldn't eat all of mine so the sandwich was shared between us.  We ambled for ages and I didn't realise just how tired my legs were getting until we finally went to check out our purchases.  I did find Gary a couple of surprise presents.  I even found a couple of things for me that he can wrap up, I know he is getting desperate on what to buy me as I have no ideas on anything I need.  What do I need?  I have wardrobes of clothes I never get to wear, I know that fashions change but nothing much seems to have changed for years so why change my wardrobe?
I looked down at my feet, which after standing still at the checkout for 5 minutes hurt, they were the size of breeze blocks, my ankles were up and my legs like tree trunks.  I left them two to wait for my buys and to do theirs and found a stool to sit on.  Lorraine joined me with our shopping as we gave Chris a head start to go and find the car.  It was a slow walk across the road I can tell you, then I had to sit sideways into the passenger side and lift each leg in.  I have never been like this. 
We had three hours in all, and I thoroughly enjoyed being out.  I hope we do it again but maybe try Binns at Darlington.  Although getting dropped near the door is a little more difficult as its a one way street and stopping isn't allowed.  It brought back memories of my mam, when she had a heart attack in November 1984 or 85 (memory not so good on dates) I took her shopping to Binns and parked out the front, I got a parking ticket but I couldn't understand why she was so tired after 30 minutes.  I wonder if she is up in heaven sending me pay back time!
I even sound like my mam these days, I can hear my breathing and it reminds me of hers, I feel so bad as I didn't realise how much she was actually struggling.  I only sound really bad when I have had a shower, whether its the moist air in the room or not I am not quite sure, but if we open the door to far it gets cold really fast.  Is there a way to win with this breathing problem I wonder.
Gary is still suffering from being run down, he is so tired and I wish he would take it a little more easy.  I am not tired anymore at 10 and keeping him up till 10.30 - 11 at night, too late for him as he has always needed plenty of sleep.  His throat is improving although he has a cold again too.  Emotions can play a big part on our general health and this is what is going on with Gary I believe.  Plus he is up and down at my every whim, I try not to ask him to do things but he just seems to know if I need things.
Anyway after shopping I sat on the sofa and kept my feet up for the rest of the day and all evening, so much so my bum felt like it would develop bedsores!
I turned the ipad on while Gary was making a cup of tea at one point and read such sad news, a friend from the meso community lost her husband John last night.  I thank Jennifer for thinking of emailing me, considering she has so many people to tell.  It broke my heart, neither have had long together to get used to the idea of mesothelioma, he was only diagnosed this May, which makes it even worse.  These last 6 months have been treatments and coming to terms with the fact, no remission time just fighting.  My heart breaks for her and her family.  The beautiful thing is he passed peacefully with his family and that is something everyone hopes for.  He is only 65 too, not even getting into his new life of retirement.  All those plans now abandoned because of a fibre he inhaled so many years ago. 
With that sad news I am closing the blog here today.  I ask that you send a thought to Jennifer and her family.

Monday, 25 November 2013

Getting Organised

We have had a strange weekend, after having a knock out on Friday night I slept really well and woke up reasonable on Saturday morning, although poor husband didn't.  His throat was sore and full of spots.  We checked the emergency supply cupboard and found some antibiotics for sore throats.  He had had one the year before and had used one and a half courses to get over it, so having enough for the weekend he started.  This isn't what you should do but under the circumstances we both agreed, better to take the tablets than not.
I didn't do a lot on Saturday, in fact I was pretty much sat on the sofa all day and Gary in the chair next to me.  Both of us out of sorts for different reasons.  Even the Bear didn't get a walk, which in itself says how poorly Gary felt.
Sunday was a total different day, although for Gary not, for me I asked him to bring all the Christmas presents down stairs and put them in the dining room.  Here I can pop in and out when I have energy and do a few.  Well in all my years I have never started wrapping this time of year, in fact I've never really had any shopping done either!
Yesterday I spent 4 hours wrapping his presents.  I know I am slower but wow I hadn't realised how many things I have ordered for him.  No wonder the poor guy is worrying about Christmas, I have given him 2 ideas and one of those was a new electric toothbrush.
Mavis has copied down Christine Winter's speech given at the DAST conference and rather than me copy and paste I would ask you go and read it here
She has also added the information regarding the bill for doctors to be allowed to use experimental drugs on cancer patients.  We are all for this who have cancer, but the few that spoil it are those who want to claim and sue hospitals.  Anything for a free meal in some people's eyes but what they don't see is the bigger picture where people who are terminal are refused these drugs because of the claim culture we have adopted.
You can read that article here
I have gone off Sunday Roast, well not off completely but I am a lover of Gravy and recently I can't taste it or in fact the meat or veg.  So yesterday I voted no for dinner.  Last night was a simple choice for me I wanted something spicy to taste but I am not really a take out girl either.  We did try a Chinese on Friday night but it made me feel a little queasy.  I asked if we could go to KFC and have their chicken.  So after a quick debate, is it too cold for me to step outside etc, we got into the car and off we went.  We ate it in the car but to be honest I couldn't taste anything.  I enjoyed the chicken burger I had but the skin didn't make my tongue tingle at all.  My thrush is still there too so whether this and the chemo is to blame I have no idea.

I asked a dear friend to enquire from her doctor daughter the reason red blood cells could be so high and this is what she came back with.  Maybe a good explanation as she is also just learning about mesothelioma but I feel it answers my question very well.

The raised red cell count could be because of the meso's destruction of the lung. The lung might not be able to absorb as much oxygen as before. So to compensate, the body makes more red cells to carry the available oxygen more efficiently. Very much like athletes who train in high altitudes where there is less oxygen in the air so their bodies make more EPO (erythropoietin) to make more red cells and increase their oxygen efficiency, improving their performance.

It was so kind of her to take the time out and ask and for her daughter to answer.

So today is Monday, District Nurse for me, Doctors for Gary.  My friends are thinking of taking me shopping tomorrow, just one shop.  They will drop me at the door then park and then we can have a wander round one shop only.  I am hoping I wake up tomorrow feeling good as it will be great to go somewhere other than hospital or my first trip out to KFC!

Lexi has picked up, in fact you would never think a week ago we thought we would be losing her, whatever happened she has pulled through, much to the relief of Gary and I.  There was no holding her back for a walk either so all's well that ends well.

For my fellow meso warriors I hope this cancer isn't driving you downhill, I know its easy saying try and stay positive, heavens I have been on my knees over the last few months, but we can get through it.  Always think tomorrow will be better than today.......

Friday, 22 November 2013

Constricted Chest

Having chemo by an oral tablet is so easy.  We arrived at the Freeman in plenty of time even though an accident had happened a couple of exits ahead of ours.  The chemo lounge has been refitted with nice new chairs and seemed even airer than the last visit.  I handed in blood results and she said won't be long just waiting for the chemo.  Everyone was having infusions, my pills arrived, popped them both and said goodbye, easy.

Joyce called over with a home made batch of her ginger snaps, these are seriously to die for.  I ate 4 while she chatted then it was dinner.  My taste buds seemed better today so Gary decided to cook a roast dinner.  I actually stuffed my face with Yorkshire puddings and veg, the gravy still tasted odd but I did eat lots.

As the night wore on my stomach became so uncomfortable, my jeans I had to undo as I bloated. When we went to bed I was so uncomfortable, I should have drained but I went to bed instead.  During the night I actually got up 4 times and each time I found it hard to breath when I got back into bed.  My torso felt like a cage had wrapped round it and my lung was unable to move up or down, it was a frightening experience.  I used the oxygen a couple of times and found the only way I could sleep was on my left side with my head really raised.  It was a long night I can tell you.

The hours seemed to tick by slowly, I heard Bear bound up the stairs and Gary get up, I lifted my head and felt terrible.  Needless to say I stopped in bed.  He came back up at 9 and brought me some water, I just couldn't lift my head from the pillow, so he sat on the bed with me.  At 10 my chest was that tight I couldn't breath again but I got up and came downstairs.

I didn't want to do anything but I knew draining would help, today we got a full litre out, the last week it's only been upto 500, could this be the chemo is irritating the meso so more fluid is producing or the meso is growing, I would like to think its the first.  It took a while then my chest started to feel roomier, more space for my lungs to move up and down.  Although this cage which was once around my left lung now seems to cover my entire stomach too. 
I am frightened of what is happening, I have never felt like this over the last 13 years and boy it isn't pleasant.  We know things can change ever so quickly and I hope that this chemo is having a desired effect otherwise what am I doing or what will I do.  If it does nothing then I have left it too late to try and save myself with another form of poison.  Decisions when you have cancer and never easy, not for us or even our oncologists.
I wish I could get this damn cancer cut out, that would be what would set my mind at rest but I know that really doesn't happen in the UK.  In the USA and I believe Australia they do do surgery quite often to remove it from the abdomen.  Although most who have it there have only just being diagnosed with it in that area, mine has spread from the lung, or so we presume.
So maybe today is a washout but hopefully tomorrow I will be back on top, fighting cancer and treatments is a hard thing for everyone to do, no matter which cancer.  Yet with ours it does seem that much more harder, maybe because we know it isn't a cure.
Anyway enough of meso, Lexi is doing well, whether its the meticam she is having, a painkiller, or it was a bug she went through we will never know but as long as she keeps improving I don't care.  At least someone is doing well in the house.
Mavis is off to a meeting today and is asking why the Gold Standard is not used around the country, it will be interesting to hear what she reports back with.  Meanwhile Christine Winters is doing a talk about the dangers of Asbestos, without people who promote this, mesothelioma will keep affecting lives, we need to have it banned.  My hubby doesn't believe our voices are heard but I believe differently, after all women did get the vote!
Have found a different printers which offers to do my books a lot cheaper than the first one I used, maybe I should have shopped around before but when you start out on anything you have no idea what you are doing.  I was quoted 6.23 per book to print, how will any money be raised for charity at that price.  The new company are estimating 4.75, at least that gives me a 1.00 for charity if I still sell these at 5.99.
I had meant to drop some books in at the Charlie Bear Charity yesterday but I hadn't done a sales sign.  What I think I will do is give her 5 for their charity and 5 for the MKMRF then I don't feel so bad asking a charity to sell on behalf of someone else.
Saks at Bishop Auckland have done me proud too, the owner has managed to sell some of The DreamWeaver's Choice and I would hope she will then be able to sell the next one.  Jane from the Spa Shop at Heighington did the best sales in her shop and is also willing to sell no 2.  It all goes to MKMRF so am grateful for their efforts.  Actually Jane has read book 2 and can't wait to stock it, so am happy about that.  Although this time I am only ordering 100 books, Chris Knighton is moving premises and I don't think she has managed to sell many of the 266 I gave her as stock, shame really that people haven't got behind this or bought them for their nephews, nieces and grandkids.  I know I am terrible but I wrote it for charity not to gain fame.
That's my news, I am going back to the sofa and hopefully feel brighter tomorrow.  If it is the chemo then today is worth it, if it isn't then I don't want to go there. Yes, I did have a few tears this morning, thinking the worst, but once I was showered, which reminds me.  You will all think I am stupid, which obviously I am.  I called the plumbers back in because our downstairs shower isn't hot enough, stupid me, the button was too stiff to press in, I thought it was at its furthest point!  Now I am having hot showers.....

I was inspired by Lisa to write this and I hope it helps those who have any worries about what to say
Last Goodbye
Wishing everyone well.

Thursday, 21 November 2013

Chemo Day Ahead

It has been a strange week, I don't think the chemo is doing that much internally to kill off the meso that is pushing inside my stomach.  For side effects, which believe me are wonderful, have been taste is awful and I have had a couple of bad migraines and some sickly feelings on the last couple of mornings. I do feel a little more tired but then I am wanting to get up at silly hours then if I fall back to sleep I am still out of bed just before 8.00

My bloods came back so today I will be taking this report up North with Me.

Liver Function
Alanine Aminostransferase     74                Scale  0 - 40
Alkaline Phosphatase              123                       35 - 120
White Cell Count                      16                         4 - 11
Haemoglobin                            172                    115 - 165
Haematocrit                             0.521                 0.37 - 0.47
RDW                                        15.4                   11.0 - 14.8

Neutrophlis                                13.5                   1.75 - 7.5
I remember both in 04 and 07 when my neutrophils were less than 1 and my chemo was deferred, although both chemo regimes during the cycles were never really ever got about 1.5 after doses 2.  Whether its the chemo causing the blood changes or the cancer I won't know and I know the nurses won't discuss your bloods so will have to wait and see Dr H.
It's funny getting chemo in a tablet form, all the stress of the infusion goes and you don't think you are actually having chemo.  I wish all the other types we have could come this way, as I am sure I am not the only one who stresses when that cannula goes into the vein and then the worry that it isn't in correctly and the tissue around the needle will burn.  I have seen this happen each year and it scares me half to death.
The main news in our house is Lexi, she has been under the weather for a couple of days.  Boy have we worried about her.  She didn't particularly want to go for a walk on Monday and Gary, being Gary, brought them back early, cutting Lexi' walk by 3/4 and just letting Bear run around.  She just laid most of the night and couldn't be bothered.  Tuesday we took her straight to the vets, had all the blood work done for her too.  They checked her over, no gum problems, tooth problems, her heart was healthy, no lumps around her abdomen etc.  She gave her a shot of pain meds just in case her back hip was radiating pain.  Needless to say Lexi slept all day.  I dreaded coming down Wednesday morning but she was still with us, and looked a little brighter.
This morning she has managed to follow me into the office but won't go out for a wee, probably waiting till it warms up a bit or she isn't desperate.  But she got up and tottered into the room which is a good sign.  As for food, she did manage half a chicken breast last night but will not eat any biscuits.  The vet said her blood sugar is low so to give her honey, wow did she like that squirted into her mouth I can tell you.  So today will be honey, milk, chicken and then for dinner tonight roast beef.  Plenty of protein in beef.  She has done well considering she has Furunculosis, holes that appear inside her body around the anus.  She has expensive human tablets because they can't operate like they could on a human.  The tablets can damage the Kidney but in Lexi's case her kidneys are doing fine.  She has had mammary cancer and of course the fear is it has crept into her pancreas.  Some of the bloods show there could be a problem here.  Of course we will keep her as comfortable as possible until we feel that she is in too much pain.  But I don't think that time is here.  She has done well for a german shepherd, 12 last July, but Tyke managed 13 and I do know others that do get to go a lot longer.
I have found a new way to store my pipe which is much more comfortable.  I thread it up over and into my bra.  What a perfect solution, no large padding on my side and it is securely out of the way.  I was going to do it down into the waist band of my trousers but that didn't work as well.  So thanks Tess for the tip about where you put yours, it seems the stomach one can do the same.
I have started knitting, yes to keep my hands busy on a night and it is working.  Although I am going to knit squares or oblongs to start with just to get back into the practise.  My mam was a great knitter and I have boxes of her oddments here, will keep me busy.  Only problem is not quite sure what size needles to use for the squares, have started on 4mm but think they are a wee bit too small, any offers of advice greatly appreciated.
Have also had some visitors this week.  Dawn called over Monday, she has the Broom Mill Day Spa so I was thankful she had managed to find some time in her hectic schedule to visit.  I used to go every Friday a couple of years ago and enjoy a massage and a natter but then when surgery was carried out my Friday's stopped and I didn't get back into the routine of visiting.  The Spa is in a wonderful location, its situated on their farm and looks out onto the rolling hills.  Fab views and of course plenty to do.  But we had lots to catch up on, beauty not being one of them!

Yesterday my dear friend Ann from work called in for an hour.  She missed her lunch so she could call round and show me the pictures from her recent week's walking over the lake district.  Another one to have great weather.  Although looking at some of the hills she climbed I am pleased I wasn't with her and her husband.  I wondered how little molly her dog managed half of the hills but knowing Ann she would have carried her!
Then Lorraine came as Gary started ironing, not that she took the Michael out of him doing it as Mark does most of his.  So it was a social day Monday and Wednesday.  I have to say though that I do find chatting for a couple of hours physically tiring, and believe me I find that hard to understand.  What is hard about talking?
My district nurse has also dropped off the DVD about breathing so I will be watching that today.  We did have a laugh when she was here the other morning as we were talking about using the diaphragm to breath etc, we all laughed as I don't have one!  Again she can't get over the change in me and its good that now she has seen me both at my worst and now coming into my best. 
I have also ordered some more oxygen not that I am using it a great deal but instead of carrying my one canister upstairs at bedtime I will leave one there and have one downstairs.  It seems when I bend over I can't breathe, we think this is down to the pressure of the cancer pushing up into the chest.  Boy it is terrible because bending is a normal function.  Even to give the dog a treat can be dangerous for me!
I also rang my hairdressers, Pauline who know owns Saks is going to sort Gemma to come to the house and cut both our hairs and bring some mags on wigs.  I really need a hair cut but with all the colds still going around Gary isn't keen on me sitting in a shop!  Mind who can blame him after the last few months we have had.
Well until I get back to doing the blog again, I hope no more side effects after today's tablet.  I just hope my fellow fighters on chemo are having the same time as me although I know that Ray isn't.  He is struggling again.  Alimta is a harsh chemo and it does knock everyone on it.  I feel for them both at the moment.
Lou has had another postponement but I am sure when you read everyones blogs you will be up to date.  Nevertheless I wish all my fellow fighters, carers and loved ones the very best.  We will find something to cure rather than buy us time, just please be soon.


Monday, 18 November 2013

Week One of Chemo

Here it is Monday morning, a wet Monday morning too.  I am still shocked that my insides haven't erupted like they would do on Alimta and carboplatin so am in a good place mentally with the chemotherapy, although those lingering thoughts of 'is it actually doing something' are in the back ground of my mind.
My tongue has turned with more white spots, I guess the thrush tablets haven't done their job properly and I need a little more help.  When I had antibiotics due to the endometriosis, thrush was a regular occurrence but I haven't had it since chemo, I hate it because getting on top of it is hard, as well as the risk of it going down the oesophagus and into the stomach, which means no food or drink for me. 
Friday the nurse came and did my dressing and I didn't notice it wasn't taped as tightly as it should.  On Saturday afternoon, feeling a little wiped out I had a nap.  Waking up with the wet head and soaking hair my hand touched my stomach, the T Shirt was soaking.  I thought I had sprang a leak from my drain, the colour instantly drained from my face I can tell you.
Lifting the top the patch was hanging off, the sponge and dressing soaking, my fear, as my stomach felt heavy, was that the water had egressed slowly around the pipe and back into the abdomen.  I don't know whether this is possible but will need to ask today.  I had no choice but to change the whole the thing but am a little worried in case the water did creep back over.  My stomach has felt slightly heavier but then there is fluid in their too.  Something else to worry about from now on, always make sure I check the dressing before stepping under the shower!
I spent most of Sunday on the computer, firstly watching a program on asbestos in Australia, very interesting, then I worked on the book format.  I need to double check some things, especially where I have italics but otherwise its ready for the printers.  I hope I can get them done before Christmas as it would make a nice gift for some friends, nothing like own publicity is there!
Gary woke yesterday really run down, not sure whether he has a cold creeping back on or just totally worn out physically and emotionally.  He tried to have a nap but the phone kept ringing, typical when some one needs a shut eye. I don't think it helps that men can't think or concentrate on more than one event in their lives and with his mother now having ovarian cancer this is bringing him to his knees.
His mother was discharged from hospital late Saturday afternoon.  I thought this a little early, I know when I had just my hysterectomy I had surgery on Thursday and came home Sunday but his mam is 79 plus they removed cancer mass from her lower stomach.  No district nurse has been assigned either and she is expected to inject herself and check the wounds.  Surely this isn't right, we spoke at length with her yesterday but she was adamant that no help was offered.  Unfortunately, we don't have her doctors name so can't phone on her behalf, just hope his Dad gets into action today and rings the surgery.
Have organised my surgery to do my bloods for chemo, they want to do them today so hopefully the District Nurse will be able to take the sample rather than me facing the freezing cold and rain outside.  Although I really could do with a hair cut!  I was hoping that maybe we could nip to the doctors then drive to the hairdressers and see if they could quickly trim my hair.  I think, looking at the weather, that is a no as well.
I was planning on my understudy coming today, but she rang yesterday to say she has pulled her back, us girls aren't that great with our backs.  At work we just grab heavy files and boxes of files without thinking, always bending and putting them on shelves etc.  Am sure everyone in accounts has a bad back!  I wonder if this is office based wide, although I never seem to see many of the men with them.  I have sent her my physio name as I think he is really good and hopefully will have her sorted in no time.  Back pain is terrible, knowing Claire she too will have turned up for work, which I hope she hasn't, as it won't do her any good being in a chair over the computer. 
So today is another long running day, I have become used to sitting in front of the computer for a few hours each morning before draining and showering.  I may even try and go back upstairs for a shower as the thermostat downstairs on the shower isn't that hot.  Now with the colder weather coming the water doesn't seem as hot and takes forever to come through.  It's just those stairs, I feel like my legs weigh a ton trying to lift them up each stair.  You take things for granted, like going up and down stairs, since all this drain thing started I have only done them once a day, one down on a morning and one up to bed.  Going to bed I have to hold on to the banister and take one step slowly at a time, also stopping on each landing to take a breath.  If I can do this again then I am moving forward.
My chest this morning felt like a large iron cage was resting around my ribs, it was quite hard to get some air in, but once I sat and took several slow breaths I managed to relax the lungs and start filling with oxygen.  I do need to learn not to bend down but to bend at my knees!  That will teach me for stroking the dog this morning.
So had better get moving, hubby is has come down, still looks like death warmed up, hopefully though he will pick up today.  He is drained himself, wish there was something I could do to take the pressure off him, maybe a magic wand to clear meso out of our lives would do it.

Saturday, 16 November 2013

Pericardium Meso or Chemo Working?

After spending Friday rather warm, OK HOT, my hair constantly feeling damp I thought this isn't so bad.  I ate, even though I have no taste at the moment.  Yes, the thrust is in my mouth and those little white spots are over the back and heading towards the Throat - Oh No please don't erupt!
My DN arrived and changed my dressing and we drained, the pain ensured no more than 700 ml was taken, it is a sharp pain but am getting used to the fact that is when to cap off.  I spent the morning and most of the afternoon doing office work.  For a change too I actually had a proper lunch, Gary bought some ham, baguette's and cheese and I had a fancy for a nice crisp bread with lots of cheese and ham.  Went down a treat I can tell you.
He set up the ironing board and I said I would do his shirts as a form of exercising but he seems to be getting the hang of ironing and just asked if I would do my own tops.  I soon had them done then looked forward to collapsing on the sofa, although I had only used my brain for most of the day I was tired.
Bear decided come what may he was having my mug of tea, several times I chased him off  but in the end he got his snout over the rim and his eyes looked at me with a trinkle, his tail wagged and I knew I had lost.  I have to be careful giving him the mug otherwise the tea would go everywhere!  Usually I get it to the floor with a towel underneath it.

I had just taken my anti sickness tablet with milk when I had this pain shoot through my heart and into the right breast.  It took my breath away.  At first I thought I had drank the milk too fast and it was cold but no, it was a pain I had recently had, although my mind was also saying to me 'last November on my first Chemo the meso went into agony, its the meso fighting its dying breath' but in my heart of hearts I knew this isn't the case.  I fear the pericardium has gathered some fluid and the pain of that is what brought this on. 
I started with 40 mg of severdol (morphine) and waited 10 minutes thinking I was quick off the mark but to no avail, the pain was coming stronger, so I took 10 mg every 10 minutes for a further 3.  I waited. This is the problem sometimes, if you take too much at once are you going overboard or not enough and you just drip feed which means you need to take a lot more to get back on top.  It has always been my dilemma with morphine.  The waves were strong, Gary was helpless as I tried to fight my way through one wave then another.  In the end I took another 20 then 40 together.  The pain eased back from a 9 to a 6 and I started to think I could get there, but I didn't want to go to bed.  My BP was low but my pulse was high end 90's.  If this had gone over 105 then it would have been an 999 call but as I said to Gary 'What would they do, push more morphine inside?'  what else can they do to get on top of pain?  To be honest it felt like hours since it had started but from beginning to when we went to bed was less than 2 hours.  I was still in pain when I went to bed but I had a hot water bottle to help ease the pain that was radiating under my right arm, the tightening in my left arm had eased, which made me feel a damn lot better too.  But I couldn't sleep, I would drop off for 5 minutes then lie awake for 30.  By 2 am I was fed up so I came downstairs and made a hot chocolate, wide awake.  Morphine can do this in large doses, it makes you tired but keeps you awake but usually this only happens to me when its intravenous not tablet form!
I sat and read articles on the Ipad not wanting to disturb Gary above, who was so soundly asleep, his adrenalin had ran its course and he needed rest.  At 4.30 I heard him stir so thought I had better go back up stairs, at least I could put the lights on and know if I slipped he was awake to catch me!
The next thing I knew it was 9.15 am and Bear was upstairs telling us he needed to pee!  Bless but we have both slept and I my body feels like last night didn't happen, only my eye's are still tired.  No doubt today I will be nodding off! 
Last night Gary also got a nice surprise, the phone rang and an old friend was on the other end.  We haven't seen these friends since they were expecting their first child, I hate to say but that is some 6 years ago.  Many times we have thought of just calling in but then drive past, why do we do that?  Hopefully we will be able to catch up at some point over the coming weeks as it would be great to hear all their news.  Time does fly then after a while you think it is far to long a distance, although we do keep in touch with Christmas cards!
So today will be restful for me, also I don't seem, touch wood, to be suffering any sickness etc from the chemo as yet, so at least that is one thing going in my favour. 
Yesterday too I was just saying I think I am fit enough to maybe go to a shop or something, I guess that has been taken off the agenda for a while.
I hope you all have a good weekend, some more good news too, another few corks popped or glasses clinked last night as scan results came back Stable.  Especially to Esther and Jimmy, that was one the the best results to lift us all for a good long time to come.

Friday, 15 November 2013

Snowdrops and Dragonflies

It's Day One of the Cycle I guess, the chemo tablet is now well and truly inside my blood, absorbed by the juices in my stomach and broken down, just hope the bile didn't destroy most of it before the poison gets to work.
We set off early, not knowing whether the A1M to Newcastle would be busy, it always is, but managed again to arrive 30 minutes early.  I stopped off at the Charlie Bear Shop, a beautiful little store inside Northern Cancer Centre, a nice big extension on the back of the Freemans Hospital.
It's quite a large airy building, radiotherapy takes the whole downstairs floor, clinics ground floor and wards 2nd floor, although that's not exactly how the floors are named.  We enter on level 1, to me ground floor!
I always stop here and buy a card or something as the money goes to cancer at the hospital.  Looking for a present I asked about putting a couple of books in there and splitting some money with their charity and MFMRF.  We got on about mesothelioma, and I asked about Dragonflies and she mentioned Debbie.  I told her that unfortunately Debbie had died, but the emblem of the Dragonfly was Debbie's and to all of us it represented the Meso Warriors, the Snowdrops the cancer charities and the fight for research.  At least I hope I am right, it would be nice to think that Debbie will always be thought of by the use of the Dragonflies and that she brought together the Meso Warriors.  What a beautiful legend to leave and be remembered for.
So up we went to ward 36, we sat till just after 11 when we were then called into the Chemo lounge.  What a large unit, a full seating area in front, then side wards and beds off to the right.  It wasn't so full so we were able to sit together.  My nurse introduced herself and started with the dreaded forms, then stopped.  When did I last have blood?  3 weeks ago, oh, no chemo unless the blood is recent.  So out came the needle, not a problem, I didn't even feel it.  Two hours to pass before the results!  Holy Lord what to do for 2 hours. 
We walked right through the hospital to the restaurant at the other side.  I couldn't believe it, I actually managed the full walk without stopping to pant or breathe.  I felt great, alive and happy.  The food was not recommendable I must say but we got another 30 minutes down and returned to the cancer side.  This time walking wasn't as good, the corridor seemed oppressive and very hot, at one point I thought the heat was going to make me faint.  I rushed out of the open doors once we got back to our side.  Oh to feel the cool rush of air!
We went back at 1.45, bloods were back and the chemo tablet ready, so I popped the drugs, which I realised wasn't the low dose I was expecting, Dr H has given me 60, still low in terms of chemo, but not the 30 I thought.  I came away, no seeing if I was ok or any reaction, but then what reaction will I have to a pill that needs to get into the body first before doing anything.
I must admit I was a little tired by the time we arrived home, maybe all that walking in the hospital.  An old classmate got in touch a couple of years ago, he lives out in Germany and is home visiting his mam, the phone rang, Can I call for a coffee.  I gave him directions, its been 37 years since I saw him in our tutor group.  It was great, we chatted for a good 2 hours before he finally left.  His mam, bless, has just been diagnosed with BC and undergone surgery.  It will be hard for him travelling back and forth but no doubt he is committed to his mam's well being.  I wish her the best of luck because fighting cancer is not an easy thing.
Speaking of mam's, I spoke to my MIL yesterday to see how she was, to me she sounded quite upset and didn't want to talk.  Gary's sister and Dad had just left after visiting so I thought it would be a good time to ring.  She really didn't say anything so I left her be.  Its hard because I don't want Gary in an awkward position but he's being at the other side of someone being in hospital and said there is nothing worse than coming home from hospital and the phone going all night asking how you were.  'I was trying to get my head around the situation and the phone never stopped', he said  So he isn't one to keep ringing up and seeing how things are.  I guess I can understand, but still not everyone see's things the same as he does. Yesterday, in the chemo ward, he didn't speak, he has a hatred of hospitals now that is embedded inside.  I said I don't like watching the infusions but its part of life, he said all he could see was me having that reaction last time and wondering whether the chemo was going to kill me before the cancer had a chance.  I guess as a patient we don't see what we look like do we.  Maybe we are grey and our faces distorted with pain, who knows, but he can't handle this much more.  I said I will ask Chris or Lorraine to bring me, but he said he wouldn't trust anyone else driving me and I was too important to him.  But if this is going to rock him emotionally every visit that isn't good either.
The other bad news is that I have to return day 8, no bringing my tablet home with me.  So my new routine will need to change again, my District Nurse appointments may need to be altered unless I can get afternoon appointments.  One thing I can do to hasten the procedure is organise my bloods at the doctors.  Thankfully that will save 2 hours waiting time at hospital next week.
So I am waiting patiently in the hope the chemo gets in, doesn't do me anything awful but kills my friend Meso with a killer kick. 
My bloods have started well so far
Hb   16.8    Wbc 17.05   Plts 244   Neuts 15.67
Really pleased with those, I quite like that you get this booklet with the info in, just hope they keep it updated, they didn't the last time at BA.  Nice to know my kidney function was normal too, that is so important on chemotherapy.  I still remember when the first two cycles of alimta and carbo  in 04 and 07,  I had to go and have the full day kidney function test.  One up at Newcastle, the other at Darlington.  I did a lot of Christmas shopping when it was at Darlington when we had the time between tests. 
Now I managed a good walk yesterday I am hoping that Gary will take me shopping one day, maybe we can borrow a wheelchair just in case I can't cope with all the walking, although I would rather not be pushed around.  I said we could just park at one place in town and I walk just through a couple of shops.  Keep your fingers crossed that the chemo doesn't knock me and that he lets me do this.  I really like looking at shops for Christmas, on line is good when you have ideas.
That's me for today, I know the community is lifting, some good results have been announced with Stable for a few fighters.  Let this continue and those champagne corks start popping frequently.

Wednesday, 13 November 2013

Wednesday - What to do?

Boy oh boy has the last couple of days flown in our household.  Monday Gary drove down to see his mam before her forthcoming operation today.  So we are on tender hooks now, we have no idea what time her surgery is and whether they will manage to remove all that nasty cancer sitting inside her.  The good thing is she is a very fit lady, a golfer who never misses her games and some one that likes to walk for miles.  Apart from having this condition she isn't at all under the weather, even the chemotherapy didn't put her off her game over the last 10 weeks.  I am sure you will all be sending a healing vibe out to her on my behalf.
On a thought that Mavis reminded me, asbestos has been linked to ovarian cancer.  Just shortly after Gary was born his mother had a problem with one ovary and had it removed, I just wonder if it has something to do with asbestos, after all his dad made snowballs with the stuff in the factory he worked in at Hull.  I did mention this to Gary but he doesn't want to go there, I can understand this but still it should be pursued, maybe I will try later when her treatment is complete.  Not everyone wants to think about asbestos or what it can do.  Plus Gary has been through the mill with me over these last 13 or more years.
Monday did fly, Liz arrived and we nattered for quite a while, in fact we didn't do any work together but admired the wonderful work of the back cover Lauren finally sent.  It is the book in one drawing!  My District Nurse arrived, the only man of the team.  He saw such a difference in me since, I haven't seen him for some 3 weeks or more.  That is always pleasing when someone notices how well you have recovered from when you thought you were on your way out, and didn't I!  I found out that when he was a young boy of 11 he fought non hodgkin's lymphoma stage 4, he was going to write a small booklet for Macmillan about it for other children but never completed it.   A little encouragement and maybe it will get done, I hope so.  After all, he is a fit young husband with a child, something that seemed an impossible dream when he was young.  He had also been away because his son had Chicken Pox and poor guy is a carrier.  That is one thing I don't want back, after chemo in 04/05 I was struck down by Chicken Pox, it was awful.  I contracted in I think in 06 and I have never felt, ok I have but at the time, so awful!  I certainly would not want it back again.  I even got the tablets the second day but to no avail.
I did settle down to work, although I now truly hate Microsoft.  I have worked mainly on the office computer so I copied my manuscript down to a temp drive and worked on the laptop, different word, I didn't worry because I kept the word format as 2003, but no, it changed the whole document!  I found my typing errors to where I have got to again and have reloaded back onto the main computer.  Now I have to reformat the whole book again.  Annoying, because of speech marks and indents etc!  Why do I do these things.  Maybe I should start watching YouTube to see what thee stupid styling theme's really do mean!
Gary was home before I seemed to have turned around, although I was pleased he hadn't driven up the A1M in the dark, I hate that stretch of road with a passion.  When I drove it a lot by the time I reached Scotch Corner my eyes would think 'Yes nearly home I'll be able to shut them soon!' funny how a stretch of road can suddenly make you tired.
My chemo is finally scheduled for tomorrow, but my cold seems to have come back this morning.  The steroids are making me eat constantly but am afraid of the junk I am constantly putting into my mouth, it's crisps - as I'm craving salt, then some M&M's for the peanut and chocolate together, then some liquorice.  Then dinner, 5 Yorkshire puddings again last night laced in salt!  What is wrong with me.  My stomach is hurting because it hasn't had so much inside all at once and I had a few kidney twinges last night, probably from all the salt!  I have told Gary to remove all crisps away from me, but this morning my hand as already been inside a bag of Doritos for the salty taste!
I am worried about tomorrow I can not lie, just because its a tablet my mind is treating the whole thing differently.  If I was having it infused tomorrow already my hands would be shaking thinking about the needle going in, as it is my mind is thinking its a little tablet and probably won't do much.  I know from the community a couple of warriors are on this treatment and seem to be fairing well, no not eating or stomach erupting so hopefully this will kill back the meso and still give me a quality of life through the treatment.
I did do some office work again yesterday, I felt the adrenalin start to beat in my heart again when I was working, so maybe the knackers yard is a long way away, or is it a lull before the storm. I did a couple of hours but I did get tired.  Sunday and Monday I felt like a new person, full of life and energy, why do those days come and go so fast?
I am hoping the wind stays down today as Christine has offered to take me to healing, it would be nice to go just before Chemo, not only to have some healing but also to catch up with my friends there.  It's been months since I last attended and although they are thinking of me it is never the same as a proper natter is it.  So if you have the wind please keep it your way at least until 2.30 so I can go!
Lou Williams is an Australian warrior, and please I hope you will read this which was published yesterday on line.  I have known her for a couple of years now and found out more about her work in this one article than in all the time I have known her.  It puts me to shame that my voice hasn't been used to the best of its ability.  Yes I have been to parliament and dropped off a petition, I have spoken at some conferences and action days but to push this when not in good health like she has amazed and humbled me.
Read here 
So today is my last day of free chemo days, Gary has already set about leaving hand sprays everywhere, quarantine starts tomorrow when we get back.  I just hope we both finally get over this cold, we seem to be passing it back and forth! 
This will be no 4 Christmas periods I have endured chemo, ok last year it stopped end of November but I still had a few side effects, my body has never forgotten what the original chemo did to my insides, I hope this year I do get more into the Christmas spirit!  God knows Gary tries his best to ensure we always have a good Christmas.  My first Christmas in 2004 we went to my brothers, I was itchy from head down, my body hurt, my stomach was painful and I just wanted to be home.  I couldn't because my brother wanted to ensure if it was my last one we were together as a family.  It was hard trying to be well when all you want to do is lie down.  Then a couple of days later we had planned to cook a meal for his parents, my parents and an Aunt and Uncle.  Needless to say I didn't see that day, I put the Turkey in the night before, got up and put the pork in then that was me.  He woke me to say dinner was ready, yes he had managed a full Christmas Dinner on his own, even 8 veg were cooked together with the meats, sausage meat, bread dressing, bacon wrapped sausages, roast parsnips and potatoes.  I felt so proud of him but so guilty that he had had to do it.  I ate such a small amount, my Aunt and Uncle didn't come, in fact I'm not sure whether my parents arrived either?  My memory is terrible.
I just hope this year isn't my last and we do make it a Christmas full of memories again. That's the problem with chemo, when is the best time of the year to have it, none really.  In the summer the summer is wasted because you are too ill to want to be outside and enjoy the beautiful (ok English rain) summer, Autumn it's getting wet, winter its down right miserable and Spring, maybe Spring is good because we are coming back to life.  But still, chemo takes it out of you, or most of us anyway.
Enough of me griping on, lets cherish today and still plan for tomorrow - life may not be everything we wanted at this moment in time but to have love, friendship and a sense of being is more important than just taking every day for granted.  Maybe I should remind myself that on a daily basis!
Lastly my thoughts go out to all those people in the Philippines, we can never imagine such a tragedy here or understand what it is like.  We were worried about a couple of our friends families and were so happy to hear they were fine.  Mother Nature is taking a beating and unfortunately the low lying lands get the brunt of her power.  Thank God for all those who work and give up time to rescue, although looking at this wonderful nation of people, they work together, something I fear that would never happen if that happened here.  In the UK we have become every man for himself, what happened to helping someone else first? 

Monday, 11 November 2013

Wet, wet and wet!

Today is the first time in a very long time that I am actually going to be on my own.  Gary's mam is due surgery to remove the cancer mass that has gathered around her ovary and hopefully the two small sites in her pelvic area.  The 3 doses of chemo have reduced the mass to an operable and successful removal size so fingers crossed it comes out as one easy piece and hey her life will be back to the endless rounds of golf she plays weekly.
This however, isn't sitting well with Gary.  He has been trying to visit his mam since she started chemo but with my health being so up and down he would not leave my side.  Son's are different to daughters but I have tried many times to get him to go, but he was always afraid that leaving me something would go wrong.  This goes back to when he would be away from home with work and it was always those times my body would have a cancer growth.  One of the worst was when it started at 8.30 at night, he was in London, and I didn't tell him.  I struggled to get upstairs to bed and spent an hour and a half one winters night on the floor because the pain was too severe to stand, I was unable to get myself onto the bed.  He only found out because I had texted a friend and said if I don't ring in the morning you had better bring a policeman and break in.  I never told him about many of the times, but because once I started with an episode or session of meso, it would last 23 days.  It didn't take a mathematician to know it started when he was away.  He holds this guilt that he wasn't there and I suffered alone.  This he only told me the day after the big birthday on the cruise that ended up in our first major argument.  Memories, wish that was a better one!
So he has left me instructions, he even wanted me to find someone to come and sit with me all day, not sure whether that's to ensure I don't do anything stupid or in case I need a helping hand!  No doubt the phone will ring every hour.  I don't want him worrying like this but what can I do.  I will be well behaved though so he doesn't have to worry.  Saying that, 4 days after I came home from my hysterectomy I pulled the hoover out and did downstairs, I nearly killed myself and boy was I in the hot water.  Those days he never noticed dog hairs etc and I couldn't stand mess in the house, so I kind of understand him not trusting me.....

I have improved so much over the last 4 days, even I can't believe the change.  I find it amazing how our bodies can come back from the depths of despair but with meso we seem to move from one thing to another.  Once I am feeling good I can guarantee that the meso will introduce another strategy to try and knock my body back down, but the fight will keep continuing.  I did say to my body this morning, yes I had a chat in the shower with it, that I think it is amazing and it probably gave me a chest infection so I had time between the drain being fitted and starting chemo.  It is trying to find a way to ensure I do things in the right timescale.  I could be wrong but with everything that I have been through in the last 9 years I honestly think someone is watching out for me.
Hard to believe on 30th September I thought I was truly at the end of my life, I wanted to roll up and die, here I am now wondering how hard the chemo will hit me and is my body ready for the next onslaught of being killed at various stages to ensure the preservation of life at the end of it.  A bit deep maybe for a Monday morning.
Liz, my extended family member, publisher, editor, proof reader and friend is popping over this morning to do some final work on the setting out of the book.  Hopefully we will have it completed, the back cover should arrive today from Lauren.  At least I truly hope so.  I just want it done now and out of the way.  So she is coming straight from her gym this morning, which will be interrupted by the district nurse no doubt.  Yes cleaning day of the site.  I did get a good 1.2 litres out yesterday and have to say I probably left another litre in, but the tube caught the nerve again and that pain was a little uncomfortable.  I also have thrush, need to start a course of tablets for that now!
Christine came over yesterday and ended up spending a good couple of hours, it was great as she managed to remember her laptop and we looked at photo's for ages.  When you see a couple of years together you certainly see changes!  For Christine her pride is her granddaughter Ava, and to be honest I feel a little of an outsider these days.  I spent a lot of time with Christine and her two children, Dani and Nats, they grew up with me as being an Aunt, but since the cancer crept in to my life I guess I stopped doing a lot of things and when you look at pictures it reminds you of how much you have missed out on your friend's life and that of the family you were a big part of.  The last time I saw Ava was when she was 1 year old!  She's now 3 coming up 4.  It's the same with Lorraine and her family.  Tasha was like a niece to me too, in fact many thought she was my daughter or Christine's, never Lorraine's!  Tasha now has an 18 year old, I remember her at 6 months, although I do see the family once a year at the BBQ Lorraine and Mark have every summer.  But still, I am no longer Aunt Jan, which is a shame.  Not having my own children it was always great being so close to them all. It is my fault, Gary and I have pretty much kept ourselves to ourselves, events I always let people down because I never know whether I would be well enough or not.  I know its only cancer, but having gone through the number of treatments, surgeries etc I have undergone plus work was always second, if I was well I put energy into work rather than into life.  I have no regrets there though because work is something or was something that was important to me.  It has, after all kept me sane and focused, my escape from mesothelioma and end of life.
By this is deep this morning, I had no idea what I was going to write this morning as I sat in front of the blog but guess something inside has been wanting to get out of the brain cell that still floats in that empty head of mine.
My plan today, well working on the book, maybe Chris and Lorraine will call in as both are off this afternoon.  The weather here is bleak.  Its cold and raining.  I will worry about Gary driving down to Hornsea as the roads are windy once he leaves York, and of course the A1M isn't a great road, although it has been upgraded quite a lot in the recent years.  We still have bad dual carriageways and farm turnings most of the way down it.
Once over I would have welcomed the house to myself, something I never had and a big treat, today I feel a little lost.  The house feels empty already, Bear and Lexi aren't happy because they haven't had a walk, I wanted Gary down the road so he is back driving before it's too dark.  Once you don't do more than 4,000 miles a year you lose the ability to drive in the winter nights, you're eyes just aren't ready for it.
Tom's funeral was on Saturday, I haven't heard from my dear friend Lisa but I hope it went well.  I know right now she will be feeling very alone.  On Tuesday Steve's funeral, which Gail has lovingly called His Celebration of Life, will be held.  Someone somewhere today will be buried who has died from this terrible cancer. 
What worries me about mesothelioma is the death, those few weeks leading up to the final moment with this cancer is one of the worst of its kind.  I know they say we will be made comfortable and our pain will not be felt but how do they really know.  No one knows what you feel, like everything else, we come in on our own and we go out on our own.  We can't say what being born feels like because we are unable to explain it then would never remember it anyway.  I know it is stupid to worry about this but always in the back of my mind, especially when I read someone has taken a turn for the worst, this thought comes to the front, I can't deny the fear I feel at times.  I also worry about how Gary will cope, as do my fellow warriors who worry about their carers.  You see we see both sides, and being part of the community we know how our partners\soulmates\family will feel once we leave them.  We can't tell them how we will feel, we don't want them upset.  I can't bear the thought of leaving Gary or never having him hold me, never being able to hold his hand, kiss his lips, snuggle up in bed, even put my freezing cold feet on his nice warm ones and he doesn't flinch. 
On a different note, we are both still lingering with this damn cold - cough, is anyone else still having such a time of it.  I have never known one last as long.  I wonder if we just keep passing it back and forth between us.  Also is another worry, he is going to see his mam, what if she gets it.  He did worn her but she wasn't bothered.  If she ends up with a chest infection after surgery Gary will feel guilty again and how will I pull him out of that, especially if anything happens?
On that note, I am going to close, my thoughts are too deep, especially for a Monday.  I am not down or depressed or being negative, just airing those cobwebs and clearing the brain.  To my fellow fighters don't get down hearted, listen to your body. 
So many people are waiting on news of whether treatment is working or not, you can never really tell on treatment because between the cancer dying, nerves readjusting and your poor body fighting nothing feels right.   Be positive in those thoughts and see those little black cells die in your eyes each time you feel a pain or something different.  Shout Die You B******.
Let's hope this week brings lots of good news, celebrations and the popping of champagne corks.  We all need a lift.  I am looking forward to leaving the confines of the house, although am nervy about losing my breath in the cold windy air.  Guess I am going to have to wait for a nice sunny crisp day.  Gary wants me to go over the woods first, I think it is too exposed and would rather go to a shop, but he thinks of germs!  Me I think of warmth.  Oh well, another week locked in won't kill me.  At least I have Facebook and a lot of friends who keep me going. 
On that note I am closing, thank you to everyone that supports me through this journey, seriously, without you all I doubt I would still be the person I am.

Thinking of the hot sunshine we will have next year!  Now I have a goal, next year is a few holidays, meeting up with friends we have met on cruises, hopefully meeting Lou from Australia and maybe even get Lisa to come the UK too.  Plans are a foot, so meso watch out!

Friday, 8 November 2013

Take 5 and Stay Alive

Its Friday, to many it's the end of a long week at work, to me it's another day house bound!  But I have to say yesterday I actually got my finger out and worked.  Yes, that single brain cell decided it had had enough of watching mindless TV or reading and browsing the internet.  I am sure we sit in front of the computer just for something to do and keep us occupied.  Gosh I could have started and finished knitting a blanket by now.
Yes, seriously, I am thinking of knitting, this will keep my hands busy and maybe slow down the nasty habit I picked up again, shssh we don't mention the word.
Yesterday was a busy day, the District nurse arrived to clean and dress the pipe, guess what this idiot did, she was holding both the pipe and the drainage pipe together and pulled, sorry rephrase that, tugged the wrong one.  Wow did that give a jolt through the old abdomen wall I can tell you.  Won't do that again in a hurry.
My young understudy arrived, I had promised it would be an hour but some 5 1/2 hours later she was still here.  My brain came alive, it was great that I somehow fell back into work mode.  Ok, I did take a break as Lorraine popped in for a quick coffee, but I was able to leave Claire to get on with stuff while I had a chat in the lounge.  It seems she was going in the gym for her work out when they closed the place, no one knows why, but that meant she was out so called for a coffee.  She has just started a new job so I hope it goes well for her.  Still working shifts and all over with them but in a job she really loves.  She works with those with mental health issues.  She is a patient person and I know that over the last 9 years she has been working in this area she has enjoyed every minute of it.  So it's nice she has found a proper place that maybe she will work until she retires.  I didn't like it went she went into some of these secure hospitals, people get attacked and injured, then theirs the patients who attack and injure themselves!
Anyway yesterday was busy.  This morning, after a long chat last night with Gary, I have decided to knock the new antibiotics on the head.  We both think the other night was a reaction to the double dose required, reading the small print, which I never normally do, it can cause irritation to the pericardium, I can do without that, plus swollen limbs etc.  I know my left foot had swollen previously but not both and not to the extent of two large barges sitting at the end of my feet.  I don't know how Mavis manages walking when her legs are swollen, but heavens your feet get extremely heavy!  So I have rang the MacMillan nurse, she is arranging for a doctor to call today.  I think the chest infection is improving, I can bring up the phlegm, which is still green but a lot lighter in colour and not as thick, but infection is still in there.  Plus I am still having sweats, I said laughingly to Gary maybe I am starting the change, I am never warm, let alone hot, but I am the one now turning down the thermostat on the central heating and opening windows!  Gosh we will save a small fortune in heating if I stay warm like this.
During the afternoon I also had a call from the Chemo lounge, where was I?  sorry I said, You are supposed to be having chemo today.  I'm not!  So information hasn't been passed again.  I said that I hadn't had any new dates as we had had to cancel due to the chest infection.  I guess I will already be in the bad books before I even get there.  The tablet will have been made up especially for me.  Dr Hughes has promised he is going in on an extremely low dose.  Which reminds me I must cancel an appointment with him as I have nothing to report on the chemo front!  So now it is waiting to see what will happen, but first I have to get this chest clear.  Why won't it just go!
I did an interview quite a while ago for That's Life Mag, the payment is going to MKMRF, so research will benefit, its not a lot £250 but its better than nothing.  I have tried to attach the link here
That's Life if you would like to read what they took from my interview.  It was all done by telephone.  The interview lasted some 90 minutes, they read it back once then it goes to the editor.  Then you get another phone call where they read the changes, you correct, which I did several times throughout the conversation then they print.  They still have a few things wrong but overall it gets the message out, Asbestos is dangerous.  Tradesmen are at risk, DIY enthusiasts are even more so tearing down old soil pipes in kitchens, digging up those awful blue\grey tiles covering concrete floors in kitchens.  Oh Yes, they are dangerous alright.
A friend who runs CMN Training solutions and does a lot on asbestos removal and awareness sent me a surprise yesterday.  Tulips directly from Amsterdam.  Oh Yes I can hear those words in my head from school when we would sing this in assembly at infant school in spring.  It made me want to dance!  I can't wait for Gary to get digging.  In our early years together we spent a long weekend in Amsterdam and we loved the market where all the bulbs were on sale.  We bought what we thought were lots, in those days we knew little about gardening!  Proud when we planted them outside our house.  Well we had to leave them behind but now we will have new bulbs to plant and new memories to create.  Oh Spring I wish you were here to see the beautiful colours these tulips will bring.
I was thinking back today, I have become friends with a very light hearted South African lady, she too has meso and is starting out on this journey, I hope her journey goes a lot better than mine.  If her attitude has anything to go by she will still be here in 15 years, let alone 9!  Anyway it made me think about to the couple of holidays we had on safari.  These were the best ever, and I dug up a photo of Gary and I.  In those days no digital camera so had to jump to 05 when it became another list of one last things to do.
Yes its a hippo behind us!
Lunch on the Savannah, I loved this time - only problem No Bathroom!  Good job for the occasional bush I can tell you.  Although you had to keep a look out.
As you can tell, I'm feeling up in myself but still saddened by the recent losses our lovely meso community has taken.  As Gail, (Steve's wife wrote) OMG Yesterday I crossed the line from being carer to losing my amazing husband Steve. He fought so bravely, I am so proud of him. Just numb right now - it was so quick, I can't believe I'll never see him again.
Also tomorrow is Tom's funeral, I hate to think how my friend Lisa is feeling right now.  We all form bonds, maybe not with the same people, after all the numbers on our groups are in the 1,000's on some sites, but we feel for each and every member.  We share the good news and the bad news.  This is a community like none other and although it isn't one I would wish to be in if I had any say in my health I am proud to be apart of it.  I just wish we could reach through cyber space and hug those that are hurting.
To those who have also lost their soul mates during the last few weeks and I haven't mentioned you, it isn't that you are forgotten, there have been too many and I don't want to dwell on the pain of losing so many other friends. On my To Those Who Fought I have added John Williams, if you would like your soul mate to have a place on here please email me a word or two which I can post.  It is a page to remember those we have lost.
To my fellow bloggers, Linda and Steve are making the most of everyday again, I don't know where these two get the energy from but they are certainly keeping us all entertained with their adventures.  Tess is doing well and back to making targets for next year.  Amanda has reported that Ray isn't doing as well on the chemo side effects this year as the last time.  I hope it is the difference between Spring and Autumn having an effect on his psychic.  As for Mavis, well she has dusted herself down again, pulling her strength back together and getting ready for another round of what treatment can be used to help defeat Mr Nasty.  Lou is still waiting for another dose, this time next week she will be flat out while the poison does its work.  We are all in this together and I hope that if any one else blogs out there you will let us know your journey so we can add you to our list of meso bloggers.  We need more of you to detail your journey, good, bad or indifferent.  They all help keep us going.
On last note, yes advertising an article, I wrote a piece for mesotheliomahelp  Article, they do publish some interesting information.  Also recently one was posted on infections and the risks of hospital.  I know this in the USA but imagine how many more cases in the UK.  Find this article Infections.
Just click the purple for the links.