Radio Star....

Oh Yes !

Thats me - a Radio Star!......Well, I took part in a phone in on Radio 5 on Sunday evening at the ungodly hour of 11.30pm.  In the main it was a discussion about the  NHSs refusal to fund certain drugs to cancer patients.  Since I got involved with JWF campagain Ive benn horrified to learn how many patients are dying because of this decision by the NHS and PCTs.

Anyway, I wont rant on about it here !

It went very well, was very well received by the public and we drummed up a lot of support.....

So...onwards and upwards comrades !!

 

The bells the bells.....

Yes I know I know - its been a while since my last entry.

Thats because all has been quiet on the 'Jane health front'.  Not a lot to report really.  Leak finally dried up, back to eating normally, we even had a holiday last month!

But for the past few weeks Ive been feeling weaker, and tireder, and acheyier.  And Ive developed a lump on my spine.  Oh yes, Im growing a hump!  All joking aside its a pretty worrying development.  I know it COULD be something innocuous - but lets face it....what are the chances?

Reported it to Mr D last week and hes ringing tomorrow with a 'plan'.  CT is already booked for Sept 3rd.

Results to follow.....

Saying NO !!

Its something Ive never been very good at. I guess a lot of Mums are like that.

Cook a meal for 12 with an hours notice?.....Sure no problem

Look after little Johnny (spawn of the devil) for a week while you go to Barbados?.....Id love to

Wash the school football teams mud encrusted kit every week?.....Send it my way

Recently however Ive learnt to say 'NO' and its so liberating. It feels vaguely naughty and selfish but so less stressful.
The next move is to start to ask others to do things for me.....I shall grit my teeth and gird my loins and go for it !

CT Scans.

They have to be the worst thing ever invented.  That and waiting for them.  My life seems to revolve around them at the moment.

I know its a month or so till my next CT scan and Im trying to forget about it and get on with stuff, but its always there, nagging at the back of my mind like an itch you cant scratch. They arnt very pleasant things anyway, I found it quite scary and found myself thinking of the numerous times Id taken a patient (when I was nursing) for a CT scan and never given it a second thought. I reassured them and held their hands when appropriate, but the full impact of it didnt really hit me.
Just goes to show you doesnt it? You can be as sympathetic and caring as you possibly could be and yet you cant empathise until youve been there yourself.
As a patient I found a CT scan to be very 'Star Trek'...that horrid drink....the needle in your arm...the big empty room...the whirring of the machine and worst of all that disembodied voice telling you to hold your breath.
The radiology staff are lovely, but obviously they had a job to do and a blubbing patient can hold them up.
Ill be better prepared this time...I hope. At least take some tissues to save the indignity of wiping my nose on my dressing gown sleeve !

Update....

Im back on here due to several kind requests.  I must admit Ive missed writing my blog, it is an outlet for me even if I often sit here with tears dropping on the keyboard.

It IS better now though, I can think and talk about it much more easily now.  I guess thats why its called the 'Cancer Journey'.  Ive been through the full gamot of emotions.  Disbelief and denial at first.  Then anger.  Then a crushing devastation .  Now its a calm acceptance, with a few moments of despair thrown in.  I find I can even joke about it now with close friends.

It sure does make you evaluate your life.  At first there were plenty of 'if onlys' - a feeling that Id wasted so much time.  Now I count my blessings, and there are so many of them.  I actually found myself telling someone recently 'In spite of everything I consider myself very lucky'  The reason for this is I think Im in a pretty priveledged position now.  I know Im time limited so I wring the very last drop out of every experience I have now.  I sit and talk to, and more importantly, listen to the children so much more.  I look at things with a new borns eyes  Everything seems so much sharper and in focus.  I have no fear, for what is there to be afraid of?

 

At last....

......three days in a row I have woken up pain free.  Im almost frightened to mention it in case Im tempting providence, especially after the past week.

I went back to see Mr D last Monday because the pain in my chest wall was becoming unbearable, and pretty scary.  He didnt seem too concerned, but at least reassured me it wasnt anything too sinister.  The rest of the week the pain moved along my scar, Im convinced it was the deep sutures finally disolving.  And now its gone.  Just slight discomfort now.  Which I can ignore quite happily.  Thats the first time in 8 weeks Ive been totally pain free.

Wednesday I went back to see Dr B - life seems to revolve around hospitals and doctors right now.  He examined me and declared me ascites free.  Then said to both Martin and I 'Looks like you may have found a cure'!! So he didnt expect this fat free diet to work really.  Well it seems to have and Im SO relieved.  Im still being really careful what I eat but having the odd low fat thing now.  Hes brought my CT scan foward so he can have a look at the lymph nodes that are left, so it should be in the next couple of weeks.

Yesterday (Easter Sunday) we had a really lovely day. Carol, Trev, David, Sarah and Grace came to lunch, the weather was lovely and I felt almost normal.  No, better than that actually I DID feel normal and we had a lovely relaxing day and a good laugh and even the fact I couldnt eat the meal I cooked didnt put a damper on it.

So, tentatively, and holding my breath, Im walking forwards and NOT looking over my shoulder.  And Im ready for the next thing.

 

If its not one thing.........

.........its another.

Well, Ive been sticking to the cardboard and grass diet rigidly for over a week now and my weight has fluctuated a bit but in general its gone down.  So thats a good sign.  Tummy is soft and not as big either.  Another good sign.  But.....

Theres always a but isnt there?  Ive developed this pain, well searing pain is more the word for it.  Directly over where I had the chest drain and the pain is the same.  I have a horrid feeling Ive either torn something or have a hernia.  Its really bad at night when Im lying down and if I turn over or get up.  Ive had it for a few days now and it isnt getting better so Im going to get an appt with Mr D this week and see what it is.

On a lighter note the family are all well.  Catherine has started her job at the pub with James and seems to be enjoying it, well enjoying the money she gets at least!  She prefers waitressing to pot washing (wouldnt we all?) and is hoping she will get more of that soon.  Edward has started at Kings Norton Golf Club and loves it there...so does Martin !!  Now the weather is nicer and we have lighter evenings I dont think Ill be seeing much of either of them!