Monthly Archives: April 2010

Guest Post 2!

My next volunteer for a guest post, is the lovely Alison….

 

To blog, or not too blog?

When I saw a note on good old facebook asking if anyone would like to write a guest blog my first thought was “Yes, I will, I’d love to”, swiftly followed by “wait I’ve never actually met this person, I’ve only ever spoken to them online, would it just be weird if I offered?” So after quite a lot of umming and ahhing I decided to offer myself up (obviously as I’m sat here taking the opportunity to write this while my monkey is having a nap), figuring that seeing as it was for an online record of the journey, and my only link was through the wonderful world of the interwebz, and that it may well be read large amounts of people who have also never met in the real world that in a way it was kind of a great idea.

When I think of the big C, unlike a lot of people (I presume) the first thing that comes into my head isn’t death, or pain, or suffering. It’s strength. I have personally known two people who have suffered with cancer, one of which was my uncle. Unfortunately he died just over a year ago. It was horrible to see, and I would never wish it upon anyone to have to see a family member go through that, especially after seeing the effect it had on my dad to lose his only brother, and my nan to lose her youngest child. However in my mind I like to think that his suffering was not the usual way. I instead like to focus on the other person that i know who has had cancer, the lovely, courageous, talented and amazing Rachel Bennet. Now Rei has been a good friend of mine for a while, and has had the misfortune of suffering through treatment for cervical cancer (more than once if I believe correctly, as I didn’t really know her while she was going through it all). Since her recovery she has become the queen of cervical cancer awareness, been on tv, met a lot of influential people and generally been awesome (this is the first thing that comes up if you google her lol). She is an awesome friend and has done huge amounts for cervical cancer awareness and smear testing. But enough about that, back to the point.

So as previously mentioned my only link to the lovely Mrs Zibee is through the internet (namely what I frequently describe as my pregnant lady forum). So I remember back when all of this first started as there were many a post about weird pains and such, and obviously many replies from everyone full of sympathy, never in a million years did I expect to find out that it was caused by cancer! I can still remember the total feeling of shock when I got a text explaining what was going on, my first thought was to let a couple of other people from our mummy forum know as I knew they would want to pass on their best wishes (just proves how valuable she’s been to us over our pregnancies and since having our kids as it was just seconds after sending a message to one person that I had a response asking me to pass on their love).

Since finding out there hasnt been a day when I haven’t noticed how strong Roz has been about this, and how she never actually complains and there is never any self pity. This is such an admirable thing, and I dont think if it was me I would be able to do the same thing. So I’m pretty sure that Roz is in the awesomely strong kicking cancers ass category. And I just hope that she realises it, and also realises how many people (whether we know her in person or not) are here for anything (Criminal minds dvds & custard creams come to mind) that she might need, and how we all know that she is totally gonna make this hideous disease her bitch!

So I’m gonna shut up now, as I don’t think that there is really much of interest in this lol, but I want to end by repeating myself…

You are totally going to make cancer your bitch, and there are more people than you will ever realise who are here for anything you need from us.

xx

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Formspring me!

I stole this idea from a friend of mine, but I have set up an interview page, so if there is anything you want to ask (Hodge related or otherwise) click here


Chemo Hit me Hard!

Wow. I think I can definitely say that this round of chemo has certainly been the worst to date. I wonder how much of it is psychological? Like, because I had such a hard time of it IN chemo, maybe that made it worse for me AFTER?

I got out of bed at around 12 on Friday. I had some lunch around 3pm, and just generally lazed around. Went upstairs at 4.30pm to say hello to Neil and pop to the loo, and thought “Hmmmm, not feeling too hot, maybe I’ll have a lie down.” Next thing I knew it was 8pm. Went downstairs again, and felt awful. Back upstairs by 8.30pm after nausea and vomiting, and didn’t get out of bed again until 10am Saturday morning. Even though I felt a bit better on Saturday, I was still fragile.

It just seems worse this time. Even talking about it now makes me feel queasy. I think between Wednesday and Friday of last week was actual rock bottom for me. Friday I was crying, saying “I can’t do this another 7 times!” And I don’t think I can. The end just seems so far away. I’m really trying hard to focus on the nice things that are happening when it’s all over (Chris and Kelly’s wedding, The Pudding Club, girlie weekend in London with my lovely friends, Kellie and Gary’s wedding and being Maid of Honour, a holiday in Devon, and a hot holiday somewhere else which has yet to be booked) and I’m really looking forward to all of those things, but I just know what has to happen before all of those. And I don’t want it to. I just want to skip to the nice bits.

It’s so easy for people to say “It’s OK, you can do it, it’s only a few days out of every two weeks that you’re poorly” or “Yes, it’s horrible, but it’s working” and I know people don’t know what to say and they just try to make me feel better, but nothing really can. I guess the flip side to that is that at least these people are saying something, instead of the ones who don’t know what to say, so don’t say anything.

Facebook clear-out, anyone?


The One Where I Don’t Care

I don’t care if you wear the wrong shoes to work.

I don’t care if your train is late by ten minutes.

I don’t care if you break a nail.

I don’t care if you’re having a bad hair day.

And you know why?

Because I would give ANYTHING to switch places with you right now. I would give anything for an ounce of normality. For just a week where I didn’t have to go or think about going, or plan my day and childcare and everything else that goes with hospital appointments.

I’d give anything not to wake up and find hair on my pillow every morning, and see it in my hands when I have a shower.

I can’t wait for the day when a conversation doesn’t start with “How are you feeling today?”

Happy?

The positivity mask has come off and this is how I really feel. I don’t feel positive. I’m NOT OK with the fact that I have CANCER. I pretend to be for the sake of everyone else, and I’m not sure that I can keep doing it.

I can’t always be the positive person everyone thinks I am. I’m far from it today. Today I want to shout and scream “WHY ME? WHY ME?”

I’m 28. I’ve been married for nearly 4 years, and I have a son just about to turn one. This should be when my life is brilliant. Not put on hold for goodness knows how long because of this bitch of a disease.

I know my scan results were good, OK? I know everyone’s happy. And so am I. But what I’m not OK with is the fact that today I sat through chemo in tears because I know I’m nowhere near the end of all the crap yet. I’m not even half way through, and I can’t handle that.


The One with the PET Scan Results

Yesterday was my PET scan. This time I remembered to bring a few CD’s, and actually managed to get a bit of sleep whilst waiting to be taken to the scanning room. It really is a dull few hours. Once again, I wasn’t allowed near pregnant women or under 16’s for 8 hours afterwards, so I stayed over at Nick’s house again.

Today was results day.

I was all ready for it being postive news from my x-ray last week, so I wasn’t too surprised when after looking at my scan, it showed that the massive tumour in my chest/lung has gone, and the bright orange glow on my scan has reduced to a tiny bit of pink, which means there are hardly any active cancer cells left. YAY!! Bye bye cancer!!

Don’t get me wrong, I am chuffed to little mint balls about this news. The treatment is working and Fiona is really pleased with how I’ve responded to ABVD. We don’t need to think about switching to a different type of chemo and that’s all great. I just feel like it’s all a bit of an anticlimax.

However, on my last PET scan, there was a little hotspot showing on my thyroid, which at first they thought may have been linked to my lymphoma, and if it was, then the ABVD would hopefully sort it out. Looking at the scan today though, showed that it was still there and hadn’t changed since last time, which means that it’s probably not related to the lymphoma, and more than likely not cancerous (but where have we heard that before?!) but she is going to refer me to have an ultrasound on that, and then maybe a biopsy so they can see what it is and whether it needs treating. It also probably means a referral to someone else who deals with thyroids.

Just when I though all of the tests and diagnoses was over….


Hope

Part of my treatment plan requires that I go for regular blood tests. I have to go every other Tuesday (the day before chemo) to make sure my counts are high enough for me to tolerate chemo, and exactly a week after chemo, again, just to check my counts.

So, this week was just my week after chemo blood test. What usually happens, is Neil and Jake come with me, so that Neil can sit in the corridor with Jake, as it’s quite cramped in there and there isn’t room for a buggy. This week, we thought we’d play it differently; instead of getting Jake in his car seat, making sure we had changing bag etc, Neil said he’d stay at home with Jake, and I’d go for the blood test. Makes sense, right? It was a nightmare when I got there. I’m usually told to sit down, and am seen and off again within 10 minutes or so. Wednesday was really busy, and I had to wait an hour, just for a blood test.

When the nurse eventually came over and took my bloods, she asked how I was feeling generally. I mentioned a few niggles, but the one she was most interested in was my breathlessness. I get breathless really quickly these days, and I put it down to the fact that the Bleomycin is known to cause lung problems. She went and spoke to Tim (the consultant on the day unit) and then came and checked my oxygen levels, then made me walk up and down two flights of stairs, and then I was to go back and have my oxygen levels checked again. There wasn’t any difference in the levels, so Tim came over and had a listen to my chest. He noticed that my right lung and left lung sounded different, so he decided to send me for a chest x-ray. I questioned this as I have my PET scan booked for Monday anyway, so did I really need a dose of unnecessary radiation? Tim’s reply was that normally he wouldn’t but because he could hear a difference he just wanted to make sure nothing untoward was going on.

I was really annoyed with myself at this point, and wished I hadn’t said anything to the nurse as this meant more waiting. Luckily though, I only had to wait about two minutes for my x-ray. I then had to trundle back up to the day unit where Tim told me to take a seat while he had a nose at my x-ray. Then he called me over…..

He showed me the x-ray I first had in December. The x-ray showed a great big mass on my right lung (which is the lymphoma) but also that my right lung hasn’t got as much capacity as it should. Technically the right should have more than the left because the heart takes up some of the room on the left. However, my right lung is smaller than my left as my diaphragm is higher than it should be. When I had my op done in January, Mr Kalkat (the surgeon) said that the phrenic nerve was involved in the mass, so this nerve basically controls the diaphragm, and because it may have been damaged, this could be what’s causing my diaphragm to squash my lung, or something along those lines anyway.

Then he showed me the x-ray that I’d just had done…

The diaphragm is still higher than it should be, although I can’t remember if it was better or worse than December. I wasn’t paying attention. What I WAS paying attention to is that the great big mass (which the surgeon registar in January reckoned was about 10cm x 5cm, and grew even bigger between then and my PET scan in February!)……..

……..WAS NOT THERE!!!!!

And whilst, I know that this doesn’t mean I’m out of the woods just yet, and I still have to wait for my PET results next week, this is really positive stuff and I am so relieved, I can’t even begin to tell you how much!


Chrissy Barnwell – Come on Down!

I put a request out on my Facebook Fan Page for people to “guest post” on my blog. I want people to see that this horrible disease doesn’t just affect me, but how it affects the others around me.

In the first of these posts, I’d like us to give a warm welcome to my lovely sister in law…..

“Hi Roz fans, I’m Christine, Roz’s sister (in-laws technically, but not that it changes anything).

I’m going to be honest. From the moment Roz began to have pains in her shoulder last summer to November – I was of course concerned – but I assumed it was one of those things where your body does something wrong, the doctors fix it, and that’s that.

I babysat Jake on the day that Neil and Roz went for the results of her biopsy. He kept me occupied, I tried not to think of anything as my mind runs away with itself alot. When they came home, I could see that the news had not been brilliant, but i was not prepared in the slightest. The best I can explain how I felt is that I felt my heart sink into my chest. I felt sorrow, anger (at the docs as you all know), scared, and I wasn’t sure what to say or do. I just knew I was there for her and my brother as I always had been, and that I was there when she needed me the most. I gave her the biggest hug in the world and didn’t want to let go till it was all over.

Since that day I feel my biggest purpose has been to be here for Roz and my family. I have bonded with my nephew and it has been more amazing than I dreamed it to be. One time I stayed at Neil and Roz’s to help out with Jake, she used her own term of “Roz-sitting”. I laughed at the time, not quite sure what to make of it. I haven’t “roz-sat” in the slightest. She has been so strong, braver than she admits, and I admire her for being herself and keeping positive. If she wasn’t in that state of mind herself, none of us would be, so we all need to thank her.

I won’t lie, I do get upset sometimes. But, immediately I think about how strong we have all been and all of a sudden I’m positive and thinking about times ahead, daydreaming about Race For Life and alsorts! Race For Life is a fantastic idea. For us, it has brought everyone together, even old school friends of Roz’s and I feel priviledged to be taking part with them!

I am doing something a little extra for Roz. You have all met Roz’s new friend – Shasta – and although my cut will never be as glam as that, I am cutting my long brunette frizzy locks (or should I say rats tails these days) off! The bravest I can be is to have it cut as a bob. Please visit my sponsor page to help me help Roz:

http://www.raceforlifesponsorme.org/chrissybarnwell
Thanks 🙂 xxx