Saturday, 5 February 2011

2011 4th February - One Step Forward, Two Steps Back

I went for a glass of water (I don't drink fizzy drinks or coffee) with Becky on Sunday which made a pleasant change - sitting on different sofas. Had a wander round Oldrids department store and spent money I could spend better on a new brow pencil and some pore minimiser. I also picked up a hair trimmer and cropped the stubborn original pre-chemo hairs down to the length of the new growth. There can't be much of it left to fall out. I look a bit like Sinead O'Connor.

Monday I drove the less familiar route on the new Crowland bypass to Peterborough. Strange having made the journey for so many years to work and now there's a brand new road. It just adds the the feeling that everything has changed. I picked Karys up from college and waited in the car park (illegally). It made me smile - she was keen to get out of there asap because "We're not supposed to be here". She didn't have any classes but had some extra work she couldn't do at home. I'm proud that she is conscientious enough to get up at 6 on a Monday when she doesn't need to and travel the 20 miles on a bus. I'm more pleased I'm still here to see it, that she's become the adult I hoped she would.

It was her idea we meet there - a new shop has opened up in Queensgate shopping centre that we both fancied trying out. It doesn't sell things, it sells services. Well just the one service - they offer fish pedicures. Now I'm sure if I think about it long enough I could convince myself of reasons not to do it, for the sake of hygiene, the sake of the fish etc. But I'm keen to do new things, to do anything and even better, make memories with my daughter. I couldn't care less whether it's the latest fad, what all the celebrities are doing. It's something I did with my daughter - a new thing, a daring thing, a fun thing, one she'll remember.

We had to fill in a form just in case something happened - like we dropped dead from the shock or whatever, usual procedure in salons of any sort from my experience. Luckily I didn't actually have to lie. I did put down my recent surgery but I'm pretty sure the bloke on duty had no clue what a stoma is and it wasn't on my feet! We were given clean rubber flip flops, clean towels and had to rinse our feet off before sitting down opposite each other and dipping our feet in. It was at this point I felt sorry for my daughter - I haven't shaved my legs in weeks. Mostly because there wasn't much there, but it's been growing back lately ....not pretty. I bet she was mortified! I apologised just in case... We decided it was like pins and needles - which I had thought would be the worst thing ever, bringing back memories of that foul Oxaliplatin, but since I could stop it, by removing my feet, it was fine. I still have numb or reduced feeling on my feet so I think, for a very ticklish Karys it was slightly harder to bear. Fair play to her, she kept her feet in the full 10 minutes. When we got home I realised I could have done with 35 minutes - but you can't take a chance with flesh eating fish can you - I mean if you don't like it, you'd rather lose a tenner than a £20 note?

The shop/salon has a completely glass front and as we sat down it seemed half of the shoppers in Peterborough wanted to have a nosy. For Karys who is as painfully shy, but less able to put up a front about it like I was, this wasn't good. As it was she asked to sit with her back to the window. She's still very self conscious, which people don't understand because of the way she dresses (like mother like daughter). They just see the liquid eyeliner, piercings, layers of black and home made hair coloured hair extensions (google image hair falls). She's putting on a front in that way and I totally get it. I just wish I'd been able to give her more self confidence, I feel responsible for that. She'll get better, I know she will. I just don't want her to make similar decisions to me because of it. I won't say mistakes, how can anything in life be a mistake really - if you're living? I'm not talking about crimes obviously, or being a horrible person, just decisions.

This week I didn't fall asleep, but I was still having some breakthrough pain and side pains which made me feel less than sparkling company, but no snoring at least.

Tuesday my district nurse popped round. Last time I saw her I was feeling great, hoping to reduce the dose of my pain relief. This time I was in more pain again. Such a short respite period.

Eventually Friday arrived and I was teary when my stoma nurse came to chat. She offered to come in with me for my results since I was alone, or be there for a chat when I came out. I was starting to doubt my confidence over how much they might have shrunk and dreading the possibility of continuing the planned course. If I didn't have more chemo - I still get to spend all day and night alone most of the time apart from the one day every week or two when I see one of my kids. That's what my life is now. I drag myself through each day, make myself eat, often get dressed just to stay alive for the next time I see them. I have no other real purpose. I just am. It's a pitiful existence and I don't have it within me right now to change it. I'm lost.

Dr Tom greeted me with my blood results. CEA up to 40.6. "Forty? You mean 4?". No, the last test has gone up again. To over double what it ever crept to before chemo. Showing me the increased size of my liver tumours wasn't really necessary at this point, nor the uncountable view of my full lungs - first time we've seen them in their entirety. He did point out I had over 2 months of no treatment following the July scan, then 3 chemos, then 2 months off. He asked how my mood is. I knew what was coming, so told him I cry several times a day at anything. I filled him in my history of depression and life events that added to it. He said "You couldn't make that up could you?". I left with a prescription for SSRIs again. It's been about a year since I managed to wean myself off them, or is it two years? Who cares.

I start back on the poison on Tuesday. Reduced dose plus growth hormone support to try and maintain my white cells from the start.

Why do I now feel like the end is nearer and last week I was thinking in terms of years? I had to pick up some more patches and supply of protein drinks from the surgery. The receptionist commented my payment exemption is valid to 2015. "If I'm still here" "Oh don't say that!" "But it's true...".


Carole said...

Hi Lisa,

Am sad reading your latest post...sad that you've got pain, sad that your levels have risen so high despite all that you're doing, sad that you're sad :-(

Leanne, my daughter is law, is terrified of fish.
When they went to Jamaica a couple of years ago they did the fish foot eating experience and she loved it (she's still scared of fish though) :-)

Not going to tell you to 'keep your chin up' 'stay positive' or 'you'll feel better tomorrow' but am going to say I'm here if you need to talk any time Lisa.
You've got my email address - get in touch if you want to chat.
No pressure if you don't want to, I'm still thinking about you either way

Tony Songhurst said...

I have just said a prayer for you Lisa...People often say they will pray for me but I doubt they ever really do...however when I say it I actually make a point of doing it there and then...

I hope it gives you some comfort but understand if it doesn't or if the thought of it makes you angry!

I prayed for healing and peace of mind..of acceptance of what is to come, whatever route that may take.

I also understand if you don't post this as it is just for you!

Much Love

T xx

crabbymonty said...

Loops, hang in there. I crashed on fizzy soda this weekend. My goal was to drop it altogether; we will see if that ever happens, but I admire you not touching the stuff.

I always like alternate routes to places. Preferably faster alternate routes, but lately I have been taking the long way. Seems I am willing to spend more time in the car if my wife is with me.

Did you figure out if the side pains were an infection? Sorry if I missed that, but I was hoping for an easy fix for you.

Hang in there. I know this whole thing can really drag you down, but don't let it get the upper hand. Keep fighting. The daylight will get longer and help your mood.

You are a beautiful woman, keep on shining!

Deborah said...

i'm not sure what i can write that will fill you with inspiration and make you smile (those "jokes" of mine are strictly between us for obvious reasons!)
All I can say is that I love you and although I am miles away I think of you every day and fire some mojo over your way.

Tony Songhurst said...

Hey Loopy,

Not heard from you in a while, how are you doing and is there anything you need, that I can send you?

Much Love

Tony x