Feeling better

After having such a nightmare of a weekend with pain I decided to help the situation and took a temezapem last night to help ease the nasty heart pain and give me a good nights sleep, which it did and I felt a lot better this morning.  My heart felt 100% better than it did on Friday, so as arranged on Saturday by my GP I was getting ready to go to the surgery to collect a form for an xray at 10am.  While I was in the shower the surgery rang to say I had an appointment at 11.10 for bloods, so thought just go then.  When I checked my phone (some time later) my GP had rang at 10.20 asking where was I? Strange how he never mentioned he'd rang and he'll think strange how I never said anything. I never have my mobile anywhere near me, infact I'm not sure why I really have one.

The antibiotics have kicked in as the pain has been tolerable today, although still a mean headache, but I really shouldn't moan.  The problem is I remember these nasty pains from 07 and it worries me, but I am trying to be positive and think it certainly is an infection of sorts.  After all it has been lingering for a week and the cold weather doesn't help, every time you breath in cold air it always affects your chest.  So my heart, ironbar across my back and headache will be an infection, I can't bear to think of it as being anything else.

The problem with mesothelioma is it can be extremely painful and as it grows the pains get worse and trying to find the right painkiller is just as hard as trying to buy the 'latest most have which is out of stock' and its been promised as a gift!  I did try severdol yesterday but that didn't help either, but the heart pain seems more severe in the morning, eases off as I move around and is back by 4 on an afternoon.  I just can't bear the thought of if this is the meso how will I cope, I have become a wimp where pain is concerned, I use to be able to withstand it, after all I laid patio's and paths with full on pleurisy without knowing it, now I just can't deal with it.

I envy those who suffer no pain with this cancer, I can't understand why I have been so unlucky, I remember being told once that opening someone's chest can bring on a whole load of pain problems on their own, having someone do that twice obviously must cause 2 lots of the same problem.  Am I feeling sorry for myself, yes, I should know better but I am worrying about the future and how on earth I will deal with more pain as this mesothelioma progresses through my chest.  It's no fun when your heart feels heavy and you have an ironball in their, together with feeling like your insides are carrying a iron bar across your back.  Also I feel like I'm being lazy, I haven't cooked for a week, I can't bear the kitchen it feels like an ice box, so hubby is cooking on his own, he's making me a hot water bottle for bedtime, and on a morning lighting a fire in the office so its nice and warm.  I wonder where he gets all the energy from and would I be doing the same if the boot was on the other foot?  I know I would but I feel guilty non the less because he is taking care of me.  In some ways I think it is easier when its the man who is ill rather than the woman. 

I know I will not be allowed to go to work tomorrow, part of me is thankful the other not, my workload is filling up plus there are so many decisions to be made on the housing side.  I honestly don't know how my brother does it, he isn't well yet seems to cope much better than I.  Maybe men are the stronger sex after all.

Time to face the ice box, maybe I should make dinner tonight.

My Oncologist doing this for us

I must admit I have not kept up with the news recently and I will probably go on my Rant and Rave to finish off but here is what the bma have published:
Two consultants have embarked on an ambitious 160-mile run to ‘defend the NHS’.

BMA council member Clive Peedell (pictured centre) and North Yorkshire consultant David Wilson (pictured left) are running from Cardiff to the Department of Health in London, to protest about the Health and Social Care Bill.

The clinical oncologists started their run at a statue of Aneurin Bevan in Cardiff city centre today (10/01/2012).

A ‘nervously excited’ Dr Peedell said: ‘We’re doing this to inform members of the public about the dangers of this bill and to put pressure on the government to get this stopped, if possible, by embarrassing them.

‘If we do not achieve that, this is important as it will put down a historic marker to say that, when things go wrong in the future, the majority of doctors wanted this bill withdrawn and opposed it in its entirety.

‘This run will increase awareness of the fact the bill will damage the medical profession and the doctor-patient relationship.’
To read further please follow the link below:

 

http://web2.bma.org.uk/nrezine.nsf/wd/BSKN-8QDJL2?OpenDocument&C=14+January+2012

Iguess I should start reading the daily papers again, to be honest I have stayed away from the News and papers since beginning of December .. shocking I know.

I got in to see the GP and he had a quick listen, the pain doesn't seem so bad once I get moving around but I have a stuffy nose and a rotten headache.  He said it sounds flat, but to be honest I don't exactly have an easy chest area to listen to.  He prescribed Clarithromycin so I came out hoping it's an infection.  I took the tablets after dinner and then 3 hours later was ill, feeling sick, diarrhoea, stomach pains etc.  My mouth tasted terrible and I knew I was having a reaction to the tablets.

This morning my heart feels heavier and my head not so good, I text my doc who wants me to go to urgent care but its Saturday and I know I will end up spending at least 4 hours sitting there with lots of bugs floating around.  Having hunted through the medicine cupboard have found some flucloxacillin so text back and said will try these but will need more on Monday if they work as I don't have a full course.    I have had intermittent pain in this area for quite a while, which I know will be the meso, but to have it full on like this I really pray it is an infection.  The pain is terrible and as I am waking up my brain is trying to deal with it by trying to categorise it in my mind, I know I am strange.  I don't have shortness of breath it just hurts if I breath deeply, guess I will be spending the weekend bored rigid on the sofa.

Its 3 years tomorrow since I had surgery, 3 years, the time has flown by so fast, it took me forever to recover from the pain, but then again I did push myself too much by being back at work 3 months later.  I am the worst patient for being ill.  But as Lyn keeps saying I can't go back and change anything I did what I did and that's that.

Scan is booked for end of February, then I guess see what is out there, if this is meso then I need to shrink it or stop it so I don't have pain and that means taking action.  I know I do have growth and I have thickening around the heart area as well as those naughty nodules, but could they grow so fast to cause so much pain in such a short period?  And action - what action is left out there for me?

My sofa is calling, have a few Dvd's to watch so maybe today will fly as well.

Heaviness in Chest

I know I should never hope this but I am hoping I have a chest infection, although I doubt it will be that.  Back in 07 I started to get this heavy feeling around my heart and as time went on headaches.  I was going to read back over my diaries but thought better of it as at the moment so I am hoping that the chest is an infection and the headaches the excess skin I have over my eyes.

Debbie did a great bit of explaining on her blog the other day of the different types of meso, the cells which construct the cancer type we have.  When first diagnosed I was mixed, its nice (in a way) to see they have a name Biophasic, I didn't know they were named until I read Debbies Blog, but now I am sure I only have the Epithelioid - not that they are good to have either!  Sometimes we all take that time out and reflect on how things are and Debbie did a great post on it.

I contacted my surgeon who suggested I go and see my GP, heaviness in the heart area is a common symptom with meso patients, it isn't the heart but the structures holding the heart in place that can be affected by the meso, I just hope it hasn't decided to grow on the false membrane around my heart.  I had the pericardium removed because the meso was on it, I can't see anyone going in and replacing this.  So I am hoping its a chest infection, although the only thing I have is a stuffy nose with a lot of aches and pains in my back.

Will keep you posted, if it is the meso you know all I will do is moan about pain again!  Just as life begins again something has to happen to knock us off our track.

I was also interested to hear from a friend in Poland who sent info on the NRGO trial, I didn't realise it was being carried out in the UK, so thank you.  I wonder if I can get some one up North to do it for us.

Oh well its shower time and then off to work.

Out in the Woods

Yesterday I finally got to do what I love best, going off in the fields with dogs and hubby in tow.  It was great to be out in the fresh air, no wind and enjoy the things in life that are free.

Fresh Air and good clean fun.

The dogs really enjoyed me being with them and we had a good 90 minutes out, I took my camera and tried to get some shots of Bear running, I love it when his eye's are bouncing and his tongue hanging out.  He doesn't look like any other dog I have ever seen.

My brother drove up to meet us to inform us that my eldest had managed to chop his foot off while chain sawing some damaged trees down.  All he knew at that time was he was in surgery!  I just can't believe the luck our family has, but luckily we later learnt that he had only sown through the top part of his foot and not completely managed to severe the tendons.  At least no major damage done, just he'll probably be in the office for a week and will be hell to work with.  He hates being inside and prefers to be out and about.

I haven't seen my GP for a while so have promised myself I will make an appointment.  I know that I said I wasn't going to chase scans and live on a three monthly cycle but I still need to organise the next scan and keep upto date with what is going on. 

I feel quite privileged to still be alive after so many years, but there again we should expect to live a lot longer.  Since I was first diagnosed we are suppose to have come a long way, so as my friend Lisa keeps asking, why do they still keeping saying 3 to 9 months?  And the way time flies that doesn't give you long does it!

On such a note I hope everyone on treatment hits the goal and remission is happening, for those starting my heart goes out to you, for us slow growers, may that keep lasting, (Lyn my fingers are always crossed for you,) and lastly those in remission may you stay that way and have no nasty surprises.

3 Year Wonder

It is nearly 3 years since I put my body and myself through the 9 hour gruelling operation to clear my chest of mesothelioma.  Ok the meso didn't hold up its end of the bargain by staying away but my body certainly worked to get on top of the intrusion, learning to live with an air leak and fluid and not forgetting that membrane which replaces the pericardium and diaphragm.  Not forgetting the stress and anxiety my hubby went through wondering whether I would make it out of surgery, then out of hospital etc.  I will celebrate the 15th, even though the meso is back it hasn't won yet and in time another war will begin to try and hold it back.

I jumped on the scales and am now at a healthy 9st 4, that is 16 lbs I have put on and I am no longer scraggy looking, only problem is I could do with staying at 9st because extra weight brings about more to carry around and extra work on the heart.  I know under today's standards that would still be underweight but I was normally around this.  I look healthy, even though my finger nails are still heavily ridged and flaky, my hair has thickened up, only taken 4 years!  To me this means all the tramua of surgery, chemo and cryo is finally out of my system and the body has relaxed back at feeling normal.  Shame the meso is back in there, otherwise I would be on top of the world.

My 3rd Boob has become more annoying since I last wrote and then last Tuesday night I had a Flight or Fight session again.  After sitting so long in the office, Bear had the front door wide open, I most have got cold on my back, it went right into the core of me.  Neither the bath or hot water bottle could warm me up, then it started, so I knocked myself out with meds, Wednesday I didn't see work as I was worn out but at least the session had gone, I also think I missed my pain killers on Tuesday morning so a touch of Cold Turkey as well?

I have told myself that I am not chasing the meso this year, I need a rest from worrying about it but I know that should things progress I will do something if possible, I just can't help it.  There are so many of us out there at the moment with slow progression who have tried so much and done so much to hold it back and each time we think we are ahead of it the meso smacks us back to reality - it will never die.

I think we are still in for a rough weather front ahead, the birds around our house are emptying 9 containers of seed every 2 days, not only do the Blue Tit's knock on the window now to remind us to fill them but now so are the rest of the collection.  Personally I would be happy if the winds would go so I can join hubby and the dogs over the fields. 

That's all from me today, just one quick note, I hope Tom is doing ok at the Bahamas Centre, when I get my memory into gear I will post the website address, but first I want to see if he benefits first.

Good luck to us all with Meso, let this year be the one we all have remission and keep the meso down.