Monthly Archives: January 2011

I’m a Gleek

Before the diagnosis, but while I’d got the horrible, incessant cough, one of the things I really missed was being able to sing. If I couldn’t get through a sentence without coughing, imagine trying to belt out a few notes? It wasn’t going to happen.

I remember Glee starting on the TV and falling in love with the show (a guilty pleasure!!), and then getting the CD soundtrack that went along with it. A huge moment for me was when I was actually able to sing along. That meant the cancer was shrinking and I got my voice back! Yay!

I wish my school had a Glee Club. The school choir doesn’t really have the same ring to it does it?

I went to a recording studio a few years back and have just spent ages trying to figure out how to upload a song on here, and failed, so I shall save that for another time.

So come on, how many other closet Gleeks are there out there?

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Invisible

*Before I start this post, I want to say that this isn’t an attack on anyone in any way, it’s just how I feel sometimes*

In the words of Alison Moyet, “I feel like I’m invisible”

I moved to Birmingham four and a half year ago after spending my whole life in Worcester. It’s where my friends and family are, and where we want to move back to. It’s home, and I’m not sure I’ll ever be ale to say that about Birmingham.

When I moved here, I was working, so had work friends I could socialise with, and socialising wasn’t such a big deal because I’d be at work 5 days a week anyway. Then I went on maternity leave, and those first few weeks, I couldn’t really drive, and needed to rest because of the bleed I’d had, so that was all fine. Then I had Jake, and once Neil went back to work after paternity leave, I found myself feeling quite lonely. Even when you have a husband, being a mum is a lonely task if you have no one to see during the day. Then I started to make friends and although I wasn’t out and about socialising every day, it was a life change for me, it wasn’t just me and Jake during the day anymore.

Then came the cancer. Socialising slowed right down then, I was useless pretty much one week out of two, and I wouldn’t expect people to keep track of my good days and bad days.

If being a mum can be lonely, being a mum with cancer is even worse.

Then came remission, and I tried to muster some sense of normality back into my life. Easier said than done. Then came another cancer, more surgery, more hospital appointments and more stresses.

But the socialising? The friends? It’s not the same as before. And maybe I’m kidding myself thinking that it could be. Friendships have changed and evolved since I’ve had my treatment, and why shouldn’t it? I can’t expect that not to happen just because of me. Maybe people are waiting for things to get back to “normal” for me. But what is normal? Is it after my next thyroid op is done? Is it after I’ve had the all-clear from it? Is it in 5 years time when I’m finally discharged from haematology?

And while I don’t think any of it is done intentionally, I don’t for one moment believe that anyone thinks “Oh no, I’m not inviting Roz”, I do believe that people forget to remember.

So here I am, feeling like a new mum, all over again.


Guest Posts

I have had 5 people do Guest Posts on this blog. I thought it would be a good idea if I put the links to all of them in this post, so you don’t have to trawl through.

April 2010

Christine, my sister-in-law

Alison, my cyber buddy!

September 2010

Neil, my hubby

October 2010

Amy, my lovely friend

January 2011

Steph, another lovely friend.


Guest Post 5 – The Lovely Steph xx

This next guest post is from my lovely friend Steph, another post that made me cry x

my rozzibee…. ♥

me and roz came together through the net. it seemed that wherever i wrote a thought or a feeling, she was there posting hers too. its so strange to think despite living miles apart we’ve been through so much together.

i lived through a violent and controlling relationship and everyday i had roz there. i was never alone because i had her right there with me, keeping me sane. telling me everything was going to be ok. bless her for putting up with my rants! there has been some long emails exchanged i can tell you!!

i remember when i thought i was pregnant with ella…. roz was hanging online for the test result. we were the first ones to know!

the day she told me she had lymphoma, was awful. i was in my new house with my mum. id gone into the bathroom and the text had come through and i just burst into tears. its just the cancer word. its so scary!! i came out and my mum didnt have a clue what on earth could have happened in the time it took me to walk to the bathroom and back!! i didnt want to tell her, i didnt want to say it. i just didnt want it to be true!

jake was so young, and all i could think of was the family that roz had always wanted. she finally had it. the perfect husband, the house, the car, the dogs and the baby! everything i want too. to be told you have cancer…. i just cant imagine how she felt.

i wish i was closer. i mean, could i get much further away!! its been really hard to just watch her go through all the treatment. i just wanted to be there to hold her hand and hug her. finding out that she had beat lymphoma was amazing. im so proud of this woman. then of course she told me about the thyroid cancer. i was gutted… but i can honestly say it wasnt as difficult as hearing it the first time, because roz has shown me and everyone else that shes strong enough to kick cancers ass. she will get through it, because she’s roz!

this wonderful woman, despite her own health issues is going to throw herself out of a plane in order to raise money to help other people going through what she’s been through. how amazing is that?! as soon as i saw that she had that planned, i knew straight away that that was my chance to be by her side and support her.

so roz….. one of my best friends. youve always been right there when i need you. and whatever i can do, i hope you know im right here for you too!!!

so lets strap on those parachutes and raise money for an amazing charity. for one day at least.. its me and you against the world 🙂

your a beautiful woman, a natural and amazing mother. a loving wife and one of the best friends a girl could ask for…

love you always pretty girl



The Op That Never Was

Friday was the day I was supposed to have the right side (as opposed to the wrong side) of my thyroid removed. I had a call from The Prof’s secretary to book me in on a cancellation that she had, so at fairly short notice, we had to organise all the things that need organising. Childcare for Jake, care for me and Jake after, time off for Neil so he could come with me to the hospital. But as well as that, organising future events based on me having my op on a certain date. And we did it. It was all sorted. I went to the hospital as instructed on Friday morning at 7.30 am. I got called through to admissions about 20 minutes later. By 8.30am I was in my gown, dressing gown and slippers.

We were crammed in like sardines and there was nowhere for any privacy what so ever. The nurse came and sat down next to me to start going through my form. Trying to be discreet, but failing miserably. When she passes the form to you, points to the bit where is says “Date of last LMP” and says “When was that?” it’s pretty obvious what she is asking, so now the whole of the room knows when it was. As do I of all the other ladies in there. I also know that one of the lady’s was in for a boob job after having a tummy tuck last year because she lost 6 stone.

I started chatting to the lady who was also having half her thyroid removed that day and trying to put her at ease because she was nervous. The 12-year-old anaesthetist then came and spoke to me (behind a curtain, but still not private) and asked about my history, the state of my veins etc. Then The Prof came to see me and got me to sign my consent form. It actually transpires that he didn’t get me to sign mine, but the other lady’s. He was unable to give me an estimate as to what time I’d go in and said that he was on his own and didn’t have a registrar with him that day. A little odd, I thought, but not impossible.

So we waited. And waited. Neil left me at around 10am to come home and work. So we waited. And waited. And waited some more.

Then 1220 came, and a woman who didn’t introduce herself came to ask if she could have a word with the other lady waiting with me. She came back at around 1230 not looking happy. She had been told her op was cancelled. Apparently there was a shortage of theatre staff and because the anaesthetist was on call that evening, they weren’t able to do all the operations. Two were being done, and two were being cancelled. I’m still sat there not knowing what’s happening with me. The miserable nurse (who looks like she is chewing a wasp and has brown leathery skin) comes in and looks at me, sensing that I’m not happy.

“Are you alright?”

“Well, I’m just waiting to hear what’s happening with my surgery”

“Oh, no, don’t worry, yours is a different consultant”

“Urm, no it’s not, we’re both under the same one”

“Oh, what’s your name?”

“Roz Barnwell”

“Oh, yes. Your’s has been cancelled, she’s coming to see you now.”

At 1245 the unidentified woman came in to the room “I need to speak to Roz Barnwell”

“Yes, that’s me and I’m not impressed!”

Cue apologies and promises of it being rearranged and it being rearranged to suit me, and yes I know you’ve had to arrange child care, sorry to inconvenience you blah blah blah.

I told them not to bother and that if the surgery wasn’t important enough to do that day, it wasn’t important enough to do at all, but she is still getting his secretary to contact me.

It’s people’s lives they are messing with. It’s not just about Friday, and this weekend, it puts everything back weeks or months until my surgery happens and then any repercussions after that.

I still haven’t decided what to do. I don’t want it done. I know that much. Who wants any surgery done? I guess I’ll wait and see what date she offers me when she calls. And if I do have it done, I certainly won’t accept being treated the way I was on Friday. I will get into my gown once I know they are on their way down to fetch me, and I will insist on a private consultation with and medical people who need to speak to me.

So, there we have it. The wonderful new purpose-built hospital in all it’s glory.


Brave, or Stupid?

I have mentioned the Lymphoma Association quite a few times in my blog. I was privileged enough to be short-listed for one of their Beacon of Hope awards, as was my father-in-law. This year they are celebrating their 25th anniversary, and in honour of this, they are holding a number of events and challenges.

I am taking part in one such event. 25 of us are going to be doing a tandem skydive and jumping out of a plane at 10,000 feet. I can’t wait!

So who are the Lymphoma Association and what do they do?

Founded by patients in 1986, the Lymphoma Association is the only specialist UK charity that provides accurate medical information and support to lymphatic cancer patients, their families, friends and carers. They have a helpline which is manned Monday – Friday. They deal with over 5000 calls and 1000 emails per year, offering information and emotional support to anyone affected by lymphatic cancer.

It is the only specialist UK charity that provides accurate medical information and support to lymphatic cancer patients, their families and friends.

The Association runs a buddy scheme. Individuals concerned about issues relating to lymphoma can discuss them with another person who has been through a similar experience. This scheme, run by a senior member of the helpline team, puts callers to the helpline who request a buddy in touch with someone who has experienced a similar situation

These are just a few things that they do.

They have really helped me throughout the worst year of my life, and I want to give something back.

This is where I need your help. I need sponsors to help me raise as much money as possible for this wonderful charity. Any donation is appreciated, as every little helps. You can sponsor me here, or if  you are likely to see me, I have a form that I can wave under your nose.

Thank you in advance!


Thyroid Op – Take 2

Sorry for the lack of posts recently, but we’ve had a busy few weeks, plus I haven’t really had anything exciting to tell you.

I keep forgetting to take my thyroxine. So far, I’m managing to remember about every other day! Need to fix that before I have my operation.

Weight wise: I lost 6lbs before Christmas, and then put half a pound on over Christmas. I wasn’t even trying. It was too hard, we were out and about a lot and it’s hard to stick to plan. So I was pleasantly surprised when I only put half on! Back to it properly now though.

We have ordered a lovely new sofa. It was supposed to take 3 weeks for delivery. We ordered it on Monday (3rd Jan), and it’s being delivered next Monday (10th Jan). You don’t have to be a mathematical genius to figure out that it’s a lot sooner than 3 weeks! I am now currently sat waiting for someone to come and collect our old sofa (I advertised it on netmums), but they are 50 minutes late.

We are contemplating getting a 4×4. The recent snow had Neil getting his boy scout head on, and he doesn’t want to be caught out in the snow again. I like the idea of one, I just don’t like the cost implications of one.

I had a phone call yesterday from my ENT consultants secretary. Apparently, she had a cancellation and wanted to give me first refusal. Apparently the waiting list is a few months long, so I could take the cancellation, or stay at the bottom of the list. I took the cancellation, so I am having my operation on 14th January, next Friday. It doesn’t give us a huge amount of time to sort a plan out, but we can. I’m just ready to get it over and done with now.