All scanned!

A very early start at the hospital today! My appointment was for just after 8am so we had to be up well before 6am so that I could take all my meds before the 2-hour fast started. As usual, despite the best efforts of the radiographers, getting the cannula in was something of a nightmare, so I am rather bruised and battered as a result. They told me that in future it ought to be possible for me to have an advanced appointment with the chemo unit to have someone used to dealing with crappy veins put the cannula in. That would be make a huge difference! The scan itself is a doddle compared with all the hassle with the cannula!

Now it's back to the waiting game. I've been told that my scans should be reviewed at the weekly MDT meeting this Thursday. Hopefully that means that someone should get back to me fairly soon after then - keep your fingers crossed for me!

Worrying

Last week I went for my 6 monthly check up with my surgeon. Having been through all the worry of finding a new lump and then getting the wonderful news that it was benign, I thought this was going to be a piece of cake. Which just goes to show that you should never take things for granted where cancer is concerned!

I took this appointment as an opportunity to mention the ongoing pain I have in my chest that is mainly focused on the area directly underneath my scar. This has been with me for a year and is not only very debilitating, it is also inconvenient as most of the time it makes it too uncomfortable to wear a bra. As a result, even though I have a new contact prosthesis, I am forced most days to use my soft 'temporary' one if I want to look symmetrical when I go out.

I had assumed (mainly because this is what my GP has said) that the pain is there because of the broken ribs I sustained last year from being resuscitated and the horrible fall and that radiotherapy had slowed down the healing process. I just resigned myself to being on painkillers for a long time in the hope that it would eventually sort itself out. However, after a year of constant pain I thought I might as well get a second opinion whilst I was with my surgeon.

He then shocked me by saying that there was absolutely no way broken ribs would still be causing pain after all this time. Instead he thought that there was something much more serious going on in the form of either a regional recurrence or bone mets and has ordered up a load of tests and scans. He also said he is referring me to another surgeon to get a second opinion on it all.

It is an understatement to say that I was shocked!

As a result I am struggling to sleep again and really very scared at the possibility of facing the same traumatic treatment I went through last year. I'm not sure how I will cope psychologically if I need to have chemotherapy again, just thought of it fills me with dread.

The icing on the cake was a confirmed diagnosis of Lymphoedema, which is hugely disappointing when I've been so careful to look after my arm but I guess when it's your right side and you are right-handed, the risks were that much higher. My surgeon is referring me to the specialist clinic and he also wants a scan of the veins in my upper arm to see if vasculitis is a contributory factor.

So, all in all not what I was expecting from a routine check up. It truly sucks to be back playing the waiting game again!

Getting back into the habit.

I haven't blogged for a while for lots of reasons. Partly because I lost my writing 'mojo' for a while but also because I've had distracting things going on in my private life too, the worst of which was a recent new cancer scare. Luckily that turned out to be a false alarm but this time last month I was convinced that I had a new primary in my remaining breast and I got horribly, horribly depressed about it all. Whilst it turned out not to be cancer the worry of it all brought back a lot of the PTSD issues which I am struggling to get back under control. On top of all that my Breast Care Nurse is pretty sure I have Lymphoedema and I am waiting for an appointment with the specialist clinic.

I know that I need to be less harsh on myself but 18 months on I am annoyed that I am still having problems dealing with all the scary stuff that happened when I nearly died. Those last few weeks of treatment, the nearly dying, the horrible fall, painful radiotherapy. . .  Mentally and emotionally I just don't seem able to move on from it all. To make matters worse, physically I am still not up to much with ongoing pain in my chest on my treatment side and pain in my upper arm which is probably the Lymphoedema. So you can see that writing has not been top of my list of priorities for the last few weeks.

Right now what I really want is quite simple - a day without pain and sleep without nightmares.

Not much to ask for is it?

I know that life cannot return to how things were before diagnosis but I yearn for a life 'more ordinary'. A life where pain and worry don't take up so much of my existence. A life that is full of all those mundane little things that I moaned about and took for granted pre-diagnosis.

<Insert a big sigh!>

Meanwhile I promise to write here more regularly again from now on.

Lessons in life (otherwise known as 'what cancer teaches you')

Cancer has taught me many things, things that perhaps none of us should need to learn but I do believe it has made me a stronger person. Not in that awful clichéd sense of the word but simply that you have to find some sort of inner strength to deal with having cancer, its treatment and the life you are left with after active treatment is over.

The experience of having cancer has taught me that carpe diem is a truism, most especially if you have the kind of poor projected survival rate that I have. I am trying to learn that the day is also something that can slip from your hands no matter how hard you try to seize it and that I shouldn't consider it a failure if I don't always manage to catch it because there will be other days. Yes, I can say that cancer has blighted my life but I can also say 'I'm still standing' because I am, even if there are days when standing is hard.

Cancer has also taught me that not everyone is able to deal with you in the same way they did before because cancer is scary and they don't know how to treat you or what to say, and as a result they slowly fade out of your life. I was surprised and quite shocked to discover the hard way who those people were but there is nothing I can do to change that and that is a failing on their part not mine. It is easy to feel bitter and indeed, a keen sense of loss, but in the end you have to just be grateful for those who stayed to make the journey with you because they are the ones who count the most.

I think we have a preprogrammed, almost primal fear of cancer and what it can mean regardless of what the prognosis might be. People shy away from you because on a very basic, almost subconscious level, they are afraid it might be contagious. The dreaded C-word is a stark reminder of one's own mortality. Also cancer is something that happens to other people, not to us, our family or our friends. The shock of that and what it means is often enough on its own to make people take a step back.

I hate the fact that awareness of my own mortality has been thrust upon me in such a brutal manner but it also gives one a great deal of focus too. It's learning how to make the most of that focus that helps you deal with the rest - mostly.

When will I be me again?

There are days when I feel like cancer has swallowed up my life, my world, my entire being, leaving me a poorer version of the person I used to be.

Where is the colour, where is the life, will I stay frozen like this forever?

But wait. . . 

I can feel the warmth of the sun shining down on me, telling me that yes, one day,

I will be me again.

Reflections

A year is a long time in anyone's life and for most of us it just flies by as the minutes, hours and days flow ever onwards. There were times last year when I felt that my life was stuck in slow motion as the days of chemotherapy dragged themselves by. At the very nadir on days when I didn't want to go on, it was a nightmare that there seemed no chance of waking from. My worst nightmare came true when in the space of an hour I went from slightly unwell to dangerously ill as the treatment designed to save my life was actually attempting to kill me. (New readers who want to know what happened can read about it here)

Coming so close to death can teach you many lessons, not the least is of course 'carpe diem' but that would be to over-simplify things. My brush with death and having to live with the knowledge that the cancer is gone for now but probably not gone for good, has taught me many things. It's certainly made me appreciate the simple joys of a pretty flower, a beautiful sunset, a stunning view. Life is precious - it is not enough to just wear it, you need to live it whilst you can!  Not quite as simple as it sounds but it serves as my mantra on good days and as a quiet reminder on those that are bad.

Cancer has stolen many things from me, things I will never get back, things that we all take for granted, things I took for granted. I am struggling to deal with that loss, to find a new path to walk. One that involves sunshine and showers instead of the cold dark rain. One that makes the insistent voice of fear a little harder to hear. I will never learn how to ignore it but I will learn how to turn the volume down.

My spirit maybe bent but it hasn't been broken.

I may still be having nightmares and flashbacks,

but I am here,

I am still standing

and that's what counts the most.

Sadness

Tomorrow I will be hopping on a coach to travel 200 miles to stay with my mother. Ordinarily something I would be very much looking forward to but sadly it is to attend the funeral of my aunt who recently died from breast cancer. She had been ill from secondaries for many months so it was not unexpected but it has still been very hard to deal with because once again I am faced with the horrible consequences of having breast cancer. It will be a very emotional day for all of us.

This is the 4th member of my family we have lost due to breast cancer which somehow makes this loss even harder.

I am hoping that it will be a bright sunny day for the funeral because my aunt was a bright sunny person who particularly enjoyed Spring.

Rest in Peace Barbara, gone but never forgotten.