Sunday, 12 January 2014

No easing up

It's Sunday and hasn't been one if the best days of my life.  Saturday I felt so much better to the point that I sat on the computer and managed to do some work, although getting up on my own or walking was difficult.  I think I overdid the sitting thing as by night time I felt restricted.  I took my knock out pill just after 9 so we could be in bed early, hence giving Gary some more much needed sleep.  I did a very stupid thing and fastened the end of my pipe across my stomach.  At 2am I woke in pain, the pipe was digging into my side, I had rolled onto it.  The pain was agony, then of course I had to go to the loo, keeping the lights off Gary helped me stumble there and back.  Once in the bedroom getting into bed was again a nightmare.  I took half a diazapam and sat on the edge of the bed, I told Gary to get back into bed and I sat dangling my legs by the side.  I was starting to feel cold so finally I managed to lift my legs in and then finally lie back.  Some how I finally fell back into a nice deep sleep and that was it till 6.50.

I woke Gary at 7 and said I needed to get up, my left side was tight and my stomach felt terrible.  He managed to get me downstairs but I felt terrible.  For 2 hours we debated on what I should do, the pain was getting tighter and I started to feel full of despair.  I don't know how I can carry on feeling this way and battle this mesothelioma.

I drained but the relief was neither here nor there, district nurse rang to come and give me an injection.  I also took half a diazapam in the hope it would release the tense muscles in my chest and ribs.  Lorraine rang and I asked her to come up.  My bum is still so uncomfortable where these hot spots have developed so we decided to move Sofia's around.  The leather corner unit taken apart and half moved into the black and white lounge, the black material sofa moved into the living room.  What a difference, leather doesn't have that softness of material.

The injection did do a good job although my ribs to pelvic area is still tight, it is hard deciding whether to have another one later this evening.  I have decided to ask Lorraine to sleep tonight as Gary is flat, his adrenalin from dealing with my pain this morning has wiped him out.  Also it may be a good idea to build pillows around me tonight so I don't move in my sleep and end up upsetting this tumour when I move.

I know in my heart that Dr A would not do radiotherapy if he thought it wasn't worth doing, so I just need to get my head round the fact that I have a fair chance at getting through these next few weeks, but I just can't take anymore pain.  I have suffered great pain either through endo then the meso from 2000.  I am running on empty and have no idea where I am going to find the will power to get through this.

I don't want to die because I don't want to leave my wonderful husband.  We talked about what he should do if I have a heart attack in the near future, did I want bringing back, yes I said, at least at this time as I still have a fair chance of getting through.

I regret now taking the chemo, but if I hadn't given it a shot I would be wondering what if's.  I do know one thing though, since dropping the chemo the tightening down this side is getting worse and tighter.

Gary has just arranged for the nurse to call again and give another injection, the pain is getting worse and the last thing I want to do is have another bad night.  It would be lovely to go to bed and curl up like any normal person.

All I can be is honest with you, I know a few friends read my blog and will undoubtedly be worried but this is my journey through one of the most painful cancers known to man.  Not everyone will suffer my pain and I pray they don't.

My feet keep getting such strange sensations and of course I can't really walk that would help keep the circulation going, but everything is such hard work.

I just hope that I manage to guide the radio therapist to the right tumour among the clusters that have gathered.  Then it's a 4 week wait to see if it has worked, shame they can't do a blast that covers a square area of 4 x 4 and encapsulate quite a few.

I just pray my body can get over the chemo sooner rather than later.  Maybe then I can start getting back to some semblance of normalality, although it would be nice to be able to eat more than I can, everything seems to get stuck part way down.

So this is the end of today's blog, once the nurse injects me I doubt I will see straight.

To my fellow warriors keep the torch burning and don't be put off by my entry.


Anne Hamilton said...

Dear dear Jan
I haven't messaged you for a while but I am still here praying for you. You don't know me, we have never met yet I feel a bond with you. I have tears as I'm writing this because I so much want to be able to say or do something to make yours and Gary's plight a minute amount easier. When I say praying - I do mean it. I pray God will grant you some relief from the terrible pain you are both in and continue to give you the strength to fight. . You are a true inspiration. I know you will keep your chin up and keep on fighting! Love and prayer. Anne x

Amanda said...
This comment has been removed by a blog administrator.
Laura said...

Dear Jan,

Just wanted to send over my prayers and let you know how much I admire you and your family's strength. My mother passed away from Mesothelioma in May of 2013 after fighting with the disease for almost two years. I wish we had found your blog sooner so that we could have been more demanding with my mother's oncologist. I hope your pain is under control and that you are doing as well as can be. Glad to see you are still posting!

Jan said...

Laura sorry to hear about your mother it is so difficult to work out the path to follow so please don't think about if only or what if.

I try to tell it as it is for me but remember not everyone follows the same one until those final days.
Thank you all for your words of support,

Anonymous said...

Hi Jan. Sorry to hear you are having a hard time - been keeping an eye on you via the blog though. Give my best wishes to Gary, keep in touch. Andy O. Yes - me!

Jan said...

Lovely to hear from you, hope all is well at your end.