Hospital Today

Thought I'd better write about today's hospital visit, before I forget what's what..

Saw Dr P, who informed my that my bilirubin levels are almost back to normal now. Normal is 4-22. Mine's 24. Which, considering it was 250, at in January, is good!
We don;t know if it's because of the stent, or if the chemo's shrunk the tumours, so reduced the obstruction in my bile ducts. I suppose it's likely to be a combination of both.

While my bilirubin's gone down, other liver function results have gone up a bit, which could be cause for concern.
It could mean the capecitabine's not working as well anymore. Or it could be something else that's affecting it.
It's not great that they've gone up anyway. Liver scan's been ordered.

Over the past month or so, I've been having pain in my shoulder too. We know there are bone mets there, so it's likely that they're worsening too.
I'll be having a few blasts of radiation on my shoulder, to hopefully help with the pain.

Dr P's also referring me back to Nottingham City Hospital, now we know the Lapatinib/Tykerb trial's still open (for now). I just hope I'm still eligible for it, and I manage to get there before the trial closes.
While I was there, I got my prescription for cycle 6 of capeciatbine/Xeloda.

Not much else to report today.. I'm tired from hanging around the hospital all day.
Dr P was running behind, which I never mind, because I know he doesn't rush his patients. He always has plenty of time for us.
Then I had my zometa infusion. They found veins to take blood, and for the zometa, first time, which is quite unusual for me!

Fishies & Harps

Right then, where are we?

Since I last blogged, I've bought a harp.. the musical variety.

I've wanted one forever, so I splurged my birthday cash (it was only a small, cheapy one, as far as harps go).
It's just lovely :) I've never attempted to play one before, so when I learned how to play Frere Jaques, I was a bit impressed with myself.
I was even more impressed with myself when I figured out part of Pachelbel's Canon (without music to follow). It's one of my favourite pieces of music, so now I'm on a bit of a mission to figure out the rest of it!

This is the harp. It's made from rosewood, and is very beautiful..




I've also got myself a fishy.. of the swimming variety, not the eating variety.
His name's Alfie, and he's a Betta. Also known as Siamese Fighting Fish. Also something else I've wanted for a while, but didn't want to lumber my dad with something else to look after (along with Dillon, my kitty) when I'm gone. I hate having to think that way, but that's how it is. But I've sourced alternative accomodation for him, should anything happen to me.

This is Alfie.. he's my bootiful blue boy..







I've been having some issues with the lymphodema in my left hand/arm (mainly my hand). My Macmillan nurse is coming to see me tomorrow, so I'm going to ask her to get me sent to the lymphodema clinic again, because I'm not convinced the sleeves and glove I've got (which I very rarely wear, because I don't usually need to) from a different lymphodema clinic, are even the right size!

Raise Funds for Weston Park Hospital Cancer Appeal

This is where I ask for your help, ladies and gents.. and it wont even cost you anything!

Weston Park Hospital is one of only three centres of excellence for cancer treatment, in the UK.
This is where I recieve my treatment, under the excellent care of their oncology team.

If you're a bit of an online shopper (like me!), you can help to raise funds for the Weston Park Hospital Cancer Appeal, just by registering through The website.. http://www.cancerappeal.org.uk/How+to+Help/Shopping+Online+for+Weston+Park.htm.
There are many places you can shop at, including shops like M&S, Currys, Tesco, Boots.. places everyone shops at. And it wont cost you a penny more than you'd be spending anyway.

Registration's easy.. it'll only take you a minute or two.
You can also register with Easysearch, to help raise a bit more, without even shopping.

I hope this doesn't come across as being 'spammy'. I just want to make people aware that they can help raise funds for this hospital, who've been so good with me, over the past year.


In other news..

Not much to report really. I'm still feeling better, with the steroids (praise the steroids!). I no longer feel my death is imminent, though it could be.. who knows.
I'm still able to eat, and don't feel sick all the time anymore.
I saw my onc yesterday, and I've put a couple of pounds back on, since my last onc visit, three weeks ago.
I still have awful stomach ache/pains, and a dodgy tummy, which I'm fairly sure is down to the Xeloda/capecitabine chemo tablets.
I started to get hand & foot syndrome on my feet, but Udderly Smooth cream seems to have rescued them, for now.

I had an ok birthday, though I wasn't too well with my tummy.
My lovely friend Lisa, had a star named after me.. a beautiful present, from a beautiful person :o)

I had a fair amount of money given to me, for my birthday, so was forced to go shopping again at the weekend!
I've also ordered something I've wanted for as long as I can remember.. a harp! I eagerly await it's arrival!

My 'Death Book'

I'm not sure if I've mentioned this before, but I have a little red leather-covered 'death book'.
I created this book when I found out my liver was failing, the cancer in there was growing again.

It talks about how I want things to be at the end.. where I want to die, what kind of funeral I want, the music I want at my funeral, certain things I want certain people to have. That kind of thing.
I made my dad aware of my 'death book's existence, because he obviously needs to know about these things. I told him to read it, whenever he wanted.
He told me yesterday, that he reads it every morning.
This all seems so wrong. My dad shouldn't have to be reading about what his daughter wants, when she dies.

I feel like I'm robbing him of something. I feel like I'm robbing James. And I feel like I've been robbed of a life I'll never have the chance to have.

I've been thinking alot, about the things I never had chance to do, and now never will.
Getting married, buying a house, at least having the option of having children.
Just normal things that most people take for granted.
I think I'm becoming more and more angry about it, by the day. I still don't feel well enough to go anywhere, or do anything, so I've got far too much time to think about things like this.

I'm so sad, angry, upset, and a whole host of emotions that I don't even think there are names for.

Normality & Children

I keep having dreams that things are 'normal'. That things are as they were before this cancer crap. In my dreams, I have long hair again. I go out. I go to work.

This morning, I woke up thinking it was time to get up for work. I haven't needed to get up for work in over a year. Then the tears came.

Then I watched a short piece on TV, about the childrens cancer department, at Great Ormond Street Hospital.
It was only on for about fifteen minutes, but it really choked me up.

These children have had no life, and yet some were facing death within a couple of weeks.
At least I've had a life. Albeit not as long as I'd hoped.
I had a wonderful childhood. My home-life was never turbulent (well ok, maybe it had it's moments when I was in my teens!), my parents are still together, I always had everything I needed, and most things I wanted, too.
I had horses, when I was a teenager, which I loved.
I've had jobs I loved. I have friends I love, and a man I love. And I've been loved.
I've had experiences, and lived my life the way I wanted to live it. But some of these children have spent most of their lives in hospital.

But, no doubt my own problems will remain more important to me, than anyone else's problems. Just like everyone else in the world's problems, will still be more important to them.


I had my onc appointment on Tuesday, which, to be honest, I was dreading.
I've been feeling worse and worse. I can't walk anywhere, without getting completely out of breath, dizzy, and my heart beating really fast.
I almost keeled over in the hospital lift, and my dad had to hold me up, when we got out.
I have no appetite, feel sick all the time, I sleep alot, and generally just feel really really grotty.
But liver function tests show that things seem to be 'stable'. I'm not entirely convinced, to be honest.

We spent the entire afternoon at hospital; in and out with my onc, blood tests, chest x-ray. And I missed my Reiki appointment, which was a shame.

Exciting news of the week..
My wheelchair's arrived.
I just need to feel well enough to leave the house, now!

It's 2008

So, christmas has gone, and the new year's here.
Happy new year? To be honest, I'm a bit sceptical about that one!

I wish I'd have appreciated those carefree christmasses more.
Those christmasses where I could laugh, joke, eat, drink, with my family and friends, without any more pressing worries than going back to work next week.

Because, you see, no matter how much I told myself and other people, that I was going to enjoy the time with my family, because this will probably be my last christmas. No matter how much I didn't want to think about how cancer's ruling my life, I did think about it.
Every minute of every day, I thought about the fact that I probably wont be here with them, next christmas.

I've been taking a cocktail of painkillers and anti-sickness medication, just to help me face christmas dinner (which I could hardly eat any of).
Constant nausea and pain, don't a merry christmas make.

If anyone out there is thinking "What a waste. There are people far worse off than you. You should be grateful you have such great family and friends. And should have just forgotten about cancer for a while, and enjoyed christmas." I challenge you to live life in my shoes, and see if you feel any differently to how I feel.

Last year, my doctor told me I'd most likely die next year (he actually said six to nine months. Which is now four to seven months).
Next year is now this year. And that's frighteningly close.

I've been in my flat for almost six months now. That time's just flown by. It's no time at all.
Six months is nothing. It goes far too quickly.

I've been with my other half for almost two years. We met when I'd just finished my first course of chemo. That was before my cancer became 'terminal'.
I had hope for the future. We had hope for the future.
Now, two years seems like no time at all. It's gone far too quickly. I want a lifetime with him.. my lifetime and his lifetime. I'm furious with cancer, for cutting this short.
Because even while I'm still alive, it's being cut short.
I'm tired alot. I have no energy. I feel ill alot of the time now.
We can't do the things we should be doing.. things I want us to be doing. It all just seems so unfair.

When I look at him sometimes, I can see in his eyes, what this is doing to him, and it breaks my heart. I know he tries to hide it, just like I try to hide it. But it's there.
I can hardly bring myself to look in his eyes now.

I look at my family, when it's mentioned. And while they seem more willing to listen, when it's mentioned now, I can see how broken they look.

And I think of all the other people, in similar and worse situations. And I wonder how they deal with this happy new year.



It's 2008, Part Deux

Having just read Minerva's blog.. a blog I visit regularly.. I came across a link to Jenny O's blog.
I found this post, which makes me feel almost ashamed of how I feel..

"My aunt Sylvia died this morning. She told her (grown) kids to go to
school, asked for a drink of water, and took her last breath. She had end-stage
pancreatic cancer and multiple myeloma, and she was at home, in a hospital bed
in her living room.

We lived our lives at a great distance. Sylvia lived in Texas (San Antonio,
Houston, Kerrville), ran a balloon delivery business, married a few men (not at
the same time), and loved fiercely. She was the strongest and most indomitable
person I ever knew. The way she lived with cancer taught me how to do it: You
live. Just keep living. Keep doing things you want to do. If your bones are
brittle, go to a water park and ride all the slides, and then take meds and
sleep all the next day. If people you love are there, spend every ounce of your
energy laughing with them, and then take meds and sleep all the next day. Don't
be "sick" with cancer. It's an annoyance. It thinks it's in charge, so let it
think so, but quietly go about your own business and don't let it stop
you.

Until it's too strong. And then, recognize that you're tired, and lie back
and marvel at the fresh, clean taste of cold water, and listen to songs that
have always moved you, and wake up a few times a day to smile at the faces of
the loving ones who surround you. Go home, and have your dog lie on the bed with
you, and open the blinds each day to watch your own neighborhood and your own
yard. Sleep, while your heart keeps beating and beating, while your nails turn
dark and then pink again, while your breathing gets ragged and then smooth
again.And then, one morning, speak softly to your children, and
just...Stop."

I'll Be Glowing in the Dark Soon

The whole brain radiation ended two weeks ago, and passed quite uneventfully.
Since then, however, my hair's fallen out (we shaved the remainder off, a couple of days ago. I looked like the stereotypical cancer patient, with wispy, moth-eaten hair. And I was leaving a trail of hair everywhere), and I've been very tired.. sleeping for 10-12 hours per night, and falling asleep in the day, too. I'm hoping that's a side-effects of the WBR, rather than an effect of the cancer.

Tomorrow, I'll be having the last of four sessions of radiotherapy to my pelvis, to hopefully help with bone pain.

It's been a very busy four weeks, with having to visit hospital almost every day. And some days, having to flit between Sheffield and Nottingham hospitals.
It feels very much like all my life is about now, is cancer and hospitals. And I've been doing some serious soul-searching about it all, recently.

Yesterday, I had a bone scan (more radiation.. I'll be glowing soon!) and CT scan, at Nottingham City hospital. And on Monday, I'll be having a heart scan.
All these are to decide whether I'm suitable for the Tykerb/lapatinib trial.
If I am suitable, and I'm accepted onto the trial, I should be starting treatment next Thursday.. just in time for christmas!
Talking of which, this is the third christmas in a row, I've been bald. Still, I'd rather be bald and alive, than be dead with beautiful hair!

I hope this chemo wont make me ill for christmas.
I'm all too aware that this could well be my last christmas, and I don't want to spend it being ill, in bed.

Liver Scan Results

I arrived at my radiotherapy appointment, to be told my onc wanted to see me first. So I knew something was up.

Half an hour in the onc's office, and I now know there's 'disease progression' in my liver.
A 3cm tumour, and a cluster of smaller tumours, in a different area to before, which isn;t the greatest news ever.

My onc's already spoken to the Dr running the Tykerb/lapatinib trial at Nottingham, who's going to send for me, for scans, hopefully before christmas.
If I'm accepted onto the trial, it'll start just after christmas. From the sounds of it, it's a randomised trial, so I may or may not get lapatinib. But I will get capecitabine, regardless.
My onc said ideally, he'd have started me on capecitabine, the week after I finish rads, but that would make me ineligible for the trial. But he also strongly feels I should have Tykerb, and waiting a few more weeks shouldn't make much difference.

I have to come off the steroids before I can be considered for the Tykerb trial. I'm only on 2mg per day at the minute, and I'll be 'weaning' myself off them, over the next 10 days. 2mg for the next 2 days.. 1mg for 4 days, and 0.5mg for 4 days.. then stop.
If I start getting headaches, or other side-effects, I have to start taking them again.

Then we had the "There's only so many more things we can try" talk. And that there comes a time when treatment will have to end. Which I obviously knew. But hearing it come out of my doctors mouth makes it seem more 'real', somehow.
But he also stressed that capecitabine had wildy varying results, with different people.. from not working at all, to keeping mets under control for a few years.

Again, I'm SO glad I changed oncs.
It's taken just two days to get liver scan results. And in that time, my onc's done all he can to get me the treatment he feels I need, at another hospital.
Unfortunately, that would probably mean that my main care would be overseen by a different onc (Dr Steve Chan), at Nottingham hospital. But my onc also said I (or my family) can phone him anytime, if I needed anything at all, or if I wasn't happy with anything. And I can go back under his care whenever I want.

I'm feeling an odd mix of emotions at the minute.
On one hand, I'm feeling very deflated and quite hopeless.. Because of the scan results.. Because I have to wait and see if I can get Tykerb.. Because I just have to wait, and I want to get on with things asap.
But 'glad' (if that's the right word) my onc's being so proactive, and that he really does seem to care.
He almost made me cry today, saying he doesn't care who I want to treat me.. he'll refer me anywhere. He just cares about me, and that I'm getting the right treatment.

He said out of all the people, he wouldn't have expected it to be me sitting there, at 31 years old, in the situation I'm in.
And he onc genuinley looked sad. Like a friend would, rather than a doctor.

Mostly, to be honest, I'm feeling deflated now.
My head's feeling more fuzzy, which is probably a mix of radiotherapy effects, and everything else that's whizzing around in there.

Cancer's Back Again

Today brought my oncology appointment. Which brought MRI scan results. Which brought the news that I'd feared. The cancer's now in my bones too.. in my shoulder, and in my pelvis.

I don't know what the treatment plan is yet. It could be another six weeks before I find out. That will be over three months from having the bone scan.
They have to decide whether to do nothing. Whether to give me more chemo. Whether to give me bone strengthening drugs. Whether to give me radiotherapy to help with the pain. Or whether to give me a combination of the above.
Meanwhile, I'm left hanging, and wondering what wonderful voyage around my body, the cancer's taking while I'm waiting.

Not the happiest of bunnys, tonight.

Guilt

I was having a bit of an email chat earlier, with a friend, and started talking about how guilty I feel about things.
It's not something I let out, very often. And when I do, the usual response is "But it isn't your fault."
I know that, but I can't help feeling how I do. And I'm fairly sure you'd feel the same in my situation.

My mum has early onset alzheimers.
She was diagnosed around two years ago, in 2005, just after I was diagnosed with stage 1 breast cancer. But she hadn't been 'quite right' for a while.
Before I moved into my new flat, I lived with my parents. And much as I really do hate to admit it, the situation with my mum was one of the main reasons I moved out.

I love my mum to bits, and get along with my parents extremely well. We've become even closer since my cancer diagnosis. But the whole situation with my mum was really having an effect on my, already delicate (thanks to cancer), state of mind.
I felt guilty when I was at home, because I didn't feel I was doing enough with her. Or enough to help my dad (who's now her full time carer. He gave up his job to care for her). But I was struggling to cope with my mum's condition, aswell as my own.
Cue feeling selfish, aswell as guilty.

Now I've moved out (and don't get me wrong, I'm still loving having my own space, and I do feel I've done the right thing), I feel guilty for not spending as much time with my parents.

I also feel guilty for putting my family (and friends) through all my cancer crap.
This is the bit where people tend to say "But it isn't your fault. You can't do anything about it."
I know that, but I feel like I'm letting people down.
Not only does my dad have my mums illness to deal with. He also has mine.
The chances are that he'll lose his wife to alzheimers, and his daughter to cancer.
I'm very aware that this may not be too far into the future. And I wonder how on earth my dad's going to cope, if both of these happen close together.
I feel guilty for putting him in that position.

I'm writing this here, because no-one's being forced to read it.
I'm not offloading my guilt onto anyone. Just putting it out there in the ether.

More Waiting, More Wondering, More Worrying

At the same time as getting the 'official' results of my liver scan, last week, I also got the results of my latest bone scan.

The bone scan showed hot spots on my pelvis (where I've been having worsening pain for almost two months now), and on my shoulder.
So I'm waiting for an 'urgent' appointment to have an MRI scan, to see if I now also have cancer secondaries in my bones.. which my oncologist feels is likely, due to my history with this wonderful disease.
I'm not sure what the NHS' definition of urgent is. But I was told a week ago, that an urgent appointment would be made.

So I'm back to waiting, wondering, and worrying.
Anyone who's been in a similar situation will understand the how hellish it is, to be waiting for scans and results.
It's on your mind as soon as you wake up in the morning. You might manage to forget about it for a few minutes at a time, throughout the day, while other parts of your life are distracting you. But it's never far away from the fron of your mind. And it's there, niggling at your thoughts, as you're going to sleep at night. Quite often, it even manages to make an appearance in some horrible form, in your dreams.

If the cancer is now in my bones too, it'll be more chemo. Something I'd hoped to be able to avoid, for as long as possible.


I should be picking up my new car (VW Polo) next week. I just need to sell my MGF now.. which I'll miss.
It's nice to be able to drive through the countryside, in the sunshine, with the roof down. But needs must, and all that. And my needs dictate that I must swap my pretty little convertible, for a sensible automatic VW.

New York, New Hair, New Home

Tuesday 24th July 2007 10:44pm

You may notice the date of this entry, and the date I've posted it, doesn't match.
You may also notice that there are several blog entries, with different dates, in this one entry.
There's good reason for this, which will become evident shortly!

The dates of these few posts don't go in the 'usual' blog order. That is, the latest is at the bottom, rather than the top.
I'm not trying to confuse anyone (honestly!). It's just that this is how I've written them.. in classic diary style really, rather than in blog style.

Firstly, I know I haven't written anything here, for ages. And I want to apologise to those who've sent messages, asking if I'm ok, and saying they're worried about me, because I've been away from my blog for so long.
Thank you so much for caring about me :o)

I'm fine at the minute, and pretty happy.
I have had some random side and back pains lately, which I'm going to be having scans for, over the next couple of weeks. So if anyone would like to keep their fingers crossed for me, that the cancer's still 'stable', and isn't doing anything, I'd be extremely grateful.

So, what have I been doing then?
Well, I've been a bit of a busy bee..

Earlier this month, I flew off to New York City (Midtown Manhattan), for 10 days, with my auntie.
The weather was absolutely boiling hot, and humid. I got very sore feet (too much walking on the first day, and me not considering how it could affect my feet (which have always been sensitive, but even more so since two lots of chemo). But we still had a great time!

We shopped alot.. Looked over NYC on the 'Top of the Rock (at the top of the Rockerfeller Centre)..
Did a 'Sex & the City tour, which I loved. I'm a huge fan of the show! We got to sit on Carries apartment stoop, eat cupcakes from Magnolia Bakery, drink Cosmopolitans at 'Scout' (O'Neils, in real life); the bar owned by Steve and Aiden, Visit 'The Pleasure Chest', where the girls shopped for their rabbits.. and see many more locations featured on the show!
We went up the Empire State Building..
Flew to Buffallo, then went to the Canadian side of Niagara Falls, where we sailed up to the falls, in the 'Maid of the Mist' boat..
Went on the Statton Island Ferry, where we waved to Lady Liberty..
Did a couple of bus trips/loops, and popped over to Brooklyn..
Shopped in Bloomingdales, Macys, Bed Bath & Beyond, 'did' 5th Avenue, and went to a huge Sunday street market..
Visited Times Square more times than I can remember.. our hotel (which was lovely!) was only a couple of blocks away.

It was far to hot, in NYC, to be wearing any sort of head-covering, on my now 'baby fuzz' covered head. So I went without.
I had a couple of comments, from the couple of people who had to check my passport, at various times during the trip.
They weren't horrible comments. Just "Oh my, what happened to your hair?!" comments.

Since I've been home, I haven't covered my head with scarves or wigs, either.
I've already gone through the trauma of going 'topless' for the first time, once.. I don't want to have to do it again.
So I wear my baby fuzz with pride. This is me. If you don't like it.. well, quite frankly, I don't care!


We arrived home on Wednesday 18th July.
On Friday 20th, I moved out of my parents house, and into my fabulous, brand new flat!
My lovely brand new flat, which has no internet yet. Hence I'm sitting here now, writing this on my laptop. But will only be able to put it on my blog when I visit my parents again, and borrow their internet.

I started looking for a flat to rent, a couple of months ago.
I found a beautiful little flat, right by the canal. Deposit was paid. Then it rained.. alot.
The flat (and all the places around it) flooded, and became unlivable. So that was that.
Shortly after that, I found another (first floor) flat, with the same letting agents. It's brand new, just been built, never been lived in before.

I'm sitting here, looking out of my fabulous new living room window, over the little park, and at the moon in front of me.

Moving out of my parents house, and into my own place, is something that, a few months ago, I thought I'd never be able to do. So, although getting your own place is always exciting, imagine how good it feels to do it, when you doubted you'd live long enough to be able to do it!

Although all the cancer stuff is constantly on my mind, I'm so happy just now. And these days, I revel in every little bit of happiness that comes my way. Because I never know when it's all going to change.
I hope the scans I'm having over the next week or so, allow me to stay this happy for a while yet.

And the herceptin that my oncologist had decided to stop, has been started again.
I've changed oncologists and hospitals, after losing faith in my previous oncologist, after what seemed to be developing into a catalog of errors.




Wednesday 25th July 2007. 2:07pm

I'm sitting here again, in my fabulous new flat, looking out of my fabulous new window, having just been for a bone scan.
After the bone scan, I had to have two x-rays. One of my shoulder (where hot spots showed up on my last bone scan, about 7 or 8 months ago. But it was decided it was 'nothing to worry about', 7 or 8 months ago. So we'll see what they say this time). And one of my pelvis.
I've been having pain in my pelvic area for a while now, which is why the bone scan was ordered in the first place.

I'm hoping they've x-rayed my pelvis, because of me telling them I was having pain. Rather than being x-rayed because they saw something on the bone scan.
Since this pain started, I've thought it was probably (hopefully) a trapped nerve. It feels like a trapped nerve to me. But what do I know really!
I've always thought bone pain would be a more dull, consistent, achy pain. Rather than the shooting pain I'm getting when I walk, with this. But again, what do I know!

As for my shoulder.. I haven't mentioned any pain to them, regarding my shoulder, because I haven't had any pain. So I can only assume the bone scan showed something up again.
I wont know the results of the bone scan, x-rays, or the liver scan I'm due to have next week, until I see my oncologist, in three weeks time.
What will I do until then?
Most likely turn it over and over in my head.. worry myself sick, cry, convince myself the cancer's now in my bones too, then pull myself together, after repeatedly telling myself it could be nothing, and telling myself if it is something, then I'll have to deal with it. Then the cycle will start all over again. And I'll keep cycling through a whole host of emotions, that I never even realised I could experience, before the cancer came about.. for three weeks.

So now, I'm sitting here, in my fabulous flat, looking out of my fabulous window, all alone, desperately wanting to be able to talk to my online 'pink ladies', through what I now fondly call my 'pink forum'. Because I know they'd understand just how I feel.
They wouldn't tell me it'll be ok, and not to worry. They'd give me a big cyber hug, and hold my hand across the ether, until I get the results.. and always.
But I have no internet.

Oh, and James and I are 'together' again.. for the past couple of months, or so. So we'll just have to see how things go.

Happy End of Chemo!

Well, here we are again!

Since my last blog entry, I'd started to pick myself up a bit, and even begun to 'look forward'.
I'd paid a visit to my GP, to say "Look, I think could do with a bit of help here. I'd like some counselling."
She agreed, and told me there's a waiting list of two to three months. Oh good!

Yesterday, I saw 'the ex', and all the feelings I was trying to hide in the little pocket of my life, where I try not to look, were dragged to the surface again.
So last night, I felt awful again. Like I was back to square one.
I've managed to shake it off a bit today, and don't feel as bad. But I still don't feel great about it all.

A couple of weeks ago, he did me the honour of telling me why he'd "fallen out of love" with me (I had asked him why). And it pretty much boiled down to the fact that he was bored.
Bored of me being boring.
While I haven't been well enough to do much, through chemo, he was bored of staying in with me.
I can't blame him really. I was bored of myself.. Barely capable of dragging myself out of bed every day, never mind keeping anyone else entertained.

I had my last (for now) chemo and herceptin treatment, last Wednesday. That's it now.
It's the first time in almost two years, that I'm having no treatment.
Herceptin wasn't working, so it's been stopped. And just being left to go it alone, is a little bit scary.
I'll be having another liver scan next week, to see what's happening in there now, at the end of chemo.

My liver function tests still aren't 'normal', but they're a hell of alot closer to normal than they were a few months ago.
We're now adopting a "watch and wait" approach.
I'll have blood tests every four weeks, to check my liver function. If the score starts going up again, I'll be scanned to see if the tumours are growing again.

If the tumours start growing again, the only option available to me at the minute, is more chemo.
If the tumours start growing again soon, I really don't know if I could face more chemo. I suppose I'll jump off that bridge when I get to it.

After a monumental cock-up by my oncologist, last week (he wanted to start me on a whole new course of chemo, when I didn't actually need it. He hadn't read my notes properly. This could have had serious health consequences for me), I'm waiting to be referred to a different oncologist, at a specialist cancer hospital.
I have no faith in my oncologist anymore, and I really need to be able to have faith in the person who's supposed to be trying to save my life.

Also since my last blog entry (and on the day my oncologist made his cock-up, incidentally), I've had a 31st birthday.
It passed by relatively quietly.. with some birthday cake and a drop or two of champagne, with my family.

So, I've managed a 30th birthday and a 31st birthday. Both of which I doubted I'd ever see, when I was first diagnosed with cancer, almost two years ago.
I hear people complaining, at every birthday, that they're getting older. I want to shake them, and tell them to be grateful they are getting older!

For my birthday, I've had a set of chrome roll hoops on my car..
















I've also had a Native American drone flute (it arrived today!), which sounds beautiful. Even the cat seems to like it.

The day after my birthday, I had chemo!

So now, I'm still feeling a bit grotty from chemo, and have some big painful ulcers in my mouth.
The grottiness should wear off soon, and I'm desperately hoping I'll be able to start looking forward again.

Angels & Bolters

I've just come across this article, via a comment in Minervas Blog.
'Angels and Bolters' talks about how some people cope with cancer, and how some people don't.
The article is talking about friends and family, rather than the 'cancer patient' themselves.

Shortly before reading this article, I discovered that, when I was first diagnosed with breast cancer in 2005, a friend of mine made it his mission to find out all he could about the disease. In his words, he read about it until his head was spinning with information.
Yet the person I was supposed to be closest to, didn't seem to want to know anything about it. And preferred to pretend everything was ok and 'normal'.


The Preachers and the Clueless..

"Preachers are anxious to give you advice and information."

"The clueless make inane comments. There are an infinite variety of idiotic remarks."

I had someone telling me yesterday, that "positivity cures all".
Seriously, if that's what you really think, you're sadly deluded.
For the most part, I've stayed positive. It didn't stop the cancer coming back, did it? It certainly didn't cure it.
I know of people with incredibly positive attitudes, who have lost their life to this disease. Their positivity didn't cure them either!
I also know of people who have had an extremely negative view of the disease they've had, and come through it with flying colours!

So please, I know people who say these kind of things are only trying to help, but please don't tell me that positivity cures all. It doesn't. And by saying this, you're implying that it's my fault the cancer came back, because I wasn't 'positive' enough in the first place.


Bolters

"They stay away because they are afraid of their own sadness or their own mortality."

I think we all know a few of those, don't we?

They run away, because they don't know how to cope with what's going on.
What makes you think I know how to cope with what's going on? It's all new to me too, you know!


Angels

"Angels know what to do, and they know what you need. They treat you like the person you always were. They know that despite the cancer you are still you."

And thank god for my angels!
I've realised they can be found in the most unexpected of places.


Fellow Travellers

"For fellow travelers, your cancer journey is their journey."

My family and REAL friends are fellow travellers.
My dad, who comes along to every hospital appointment with me, always drives me there, and always hangs around for hours while I'm having chemo, to take me home again.

And of course, other people on their own breast cancer journey. I class them as fellow travellers too.
We share the map that helps to get us where we want to go. And give each other pointers, on the way.