Change is in the air.

I have had 3 amazing months.
Months filled with everything I could have wanted and more.
Love, so much love.
Happiness
Achievements
Old friends, new friends.
Holidays abroad and holidays in the UK.
And most of all, very few hospital stays.

But, I can feel it in my gut, things are about to change.
I've lost my stamina.
In the past, I have picked up pretty well after surgery.
I know the rules, I know to keep moving, I know to breathe to deep.
But this time is different.
This time recovery has been slow.
I expected it to be slow to be honest, its one of the biggest ops I have had.
But its not that.
Its not even the complications.

On top of the usual surgical recovery, I have developed a new condition.
costochondritis. Basically inflammation of the cartilage in my rib cage.
It makes sense, the trouble is, nobody know if it will be permant or temporary.
The main issue is pain, getting comfortable at night is a nightmare.
But it causes other symptoms. Odd symptoms you wouldnt expect.
It makes one of my boobs sore, it sticks out and it aches and pulls.
But its not just that.

As I say, I am not being unappreciative. I have loved the last 3 months.
But change is in the air.

After spending a night in A&E unable to breathe, I was started on anitbiotics.
My chest is a mess. My doctor says its to be expected, spending so much time under anesthtic.
I have been started on steroids and a second course of antibiotics
But that is just the start.
As soon as a bed comes available, I am being admitted for a course of IVs
Hopefully it will help.

But the doctor did admit that I am now colonised psuedomonas and possibly staph.
Basically means, they will always live in my lungs now.
And flair up whenever they decide to.

But again its not that.
My bladder is playing up.
It took 3 courses of antibiotics to clear the infection
and I'm still not sure if it gone.
I cough a lot and at the minute I leak easy.
Not good when your lying in bed hooked up to machines.

The coughing has other side effects.
prolapses and as I mentioned bladder issues.
But I cant bear the thought of getting them checked over.
The thought of another clinic.
Another doctor.
I cant bear the thought of having them confirm what I already know.
Or to tell me of more problems.
I feel I am falling apart.

But once again, its not even that.
I keep mentioning 3 months.
I do look back and smile.
But there is more to 3 months.
My last trach lasted 3 months before the scar tissue built up.
And I have feeling this one is going to be the same.
I am able to talk more without covering the hole.
This means it my airway is blocking below the tube again.

Time is getting to be a problem again.
I have another tube waiting somewhere in the hospital for me.
That will give me another 3 months.
That should take me to the next surgery.
But what if it dosnt work.
What if the cartilage dosnt grow.
what if dies before I even get to my next appointment.

I have never been a whatif type of person.
Yet now I feel myself getting scared.
Scared of what I dont know.
Perhaps what is next to go wrong.
Perhaps, I am just tired.
Tired of everything.
Tired of things going wrong.
Just tired.

Its no one thing, it a hundred small things all rolled into one.
And there is nothing I can do to stop any single one of them.
Every answer just out of reach.
Every solution short of one step.

I have come so far
and I will ever be thankful for everyone who has gotten me to this point.
Be it friends, family, doctors, nurses, donors.
But the truth is, right now, the future grows less clear.
I can see myself getting weaker.
the last few weeks are taking their toll.
Maybe sleep will help.
But I am changing.
Life is changing.
evolving
change is in the air.
maybe good change
maybe bad change
But any change, is always accompanied with drawbacks and oppertunites.

Perhaps sleep will numb my mind to stillness tonight.
Perhaps I shall sleep more than a few unbroken hours.

Hope

Another quick one unfortunly/hopefully. I have to be up at 5 am and the only reason I am writing now is because I am running treatments before bed. Plus I have a migraine so more reason to sleep.

I was a little delayed getting out of hospital. By little I mean I mean about a day and half. I felt like crap the day I was supposed to come home and though I knew I could make it home and then sleep, pharmacy messed my prescription up. So by the time that came, I was a little wound up, it was getting dark and I was tired.

Actually, at one point I did leave the ward for an hour to hide and wrote a kinda depressive entry on my phone. I will see if I can get it to post in a bit. Things were just winding me up. I was in with a person who has a similer issue as me, but with a better outlook. She was last in hospital 3 months ago. And well, as this is public I wont write much, but you know how you can try so hard to keep your health going and then other people who are polar oppossites end  up just irritating you. Well yeh.

So anyway, I stayed an extra night to refresh and such, but that of course meant less time sorting things once I was home for going away. So I am a little stressed out right now and kinda functioning on auto pilot. Hoping that the time away with plenty of rest will do me good. Though still feeling a little ill, but I have paid a lot of travel insurance.

So whats next. Well, on an up note, my surgeon and I have made a new plan and I am fairly hopeful for it.

About 2 years ago one of the first operations my surgeon performed on me, was called a tracheal resection. Bascially what they do for the resection, is they take a piece of cartilage from between your rib bones and shape it. They then insert this into the trachea to open up the airway more and cover it in skin grafts. Right now, that bit of cartilage is still in my airway and doing a ok job.

Now the problem is, if you feel between your rib bones there really isnt much cartilage there. It is very painful to take and has a purpose of allowing your rib cage to move. This means they can not take too much of it. This is were the complex bit is going to come in this time.

The plan is, to take the cartilage  as much as he thinks he can safely get away with. He is then going to bury it into my my left arm and attach it to a blood supply. The hope of this, is that once the cartilege is in my arm, it is safe from infection, but it will have room to grow bigger, allowing him to open my trachea up more. Its complex. It obviously involves multiple areas of surgery and a heck of a lot of pain. But pain can be managed and hopefully, with the extra cartilage  my airway can be better supported and I can breathe and talk again.

Thats the plan anyway. I am not sure how long my arm will need to house the cartillege, but hopfully it will go in to place at the start of December. That gives me time to do my 2 holidays.

And it is of course hope. I may just get through this and if not, perhaps it will buy me a little more time until transplant becomes an option.

Its big, im not saying it not, but it is worth the shot.

I dont think I will ever be able to express my full gratitude to the team in charing cross. From the surgeons, to the anesthtics the nurses, the assistants. They all keep me strong. And I have confided a lot in them this week. This week was a tough one. I was honest about a lot of things with some of the staff, before I dont think they realised where things were heading. There are some staff that go way beyong there duty, be mugs of hot chocolate at midnight, hugs when you look down or even a text. On one of my rough days, one of the nurses had exchanged phone numbers with me, I often talk to her and visit the ward to see her if I am in clinic. She told me that her and some of the other staff were always blown away by my bravery on the ward. How I face everything head on, make the most of it and manage my symptoms the best I can. It probably sounds cheesy and silly, but right that night, it was what I needed to hear. It helped me face the long night ahead. As I say, I dont think I will ever be able to fully tell the staff how much they have all meant to me.

So a plan is in place.
Things feel good at the moment.
I am looking forward to some time away from everything.
And to add to boot, mum finished chemo last week and today she got the all clear from her bone scans as there had been a worry that she had some secondaries. But its all good.

And for now, see you next week.