good good

Good news - they have agreed to give me a PET scan :) so hopefully it'll come back clear and I can be reassured.

Also, port is coming out on monday. That's gonna be painful but be glad to be rid of it!

x

Hi Peeps,

Sorry for lack of blogging - I have been so knackered! I don't know what's wrong with me. My fatigue is worse than when I was having chemo. But I am on the healthy eating wagon, so hoping that'll help improve things over time.

So the hospital called and said I don't have to pay for anything and to ignore the invoice. So that's good :) and I'm finally off on my YCT holiday on the 1st July (woop woop).

On thursday I have an appointment to get a second opinion on my remission stuff. Hopefully I can get a PET scan and put my mind at rest. It's very easy to get paranoid about all sorts once you've had cancer and aren't 100% sure it's gone. And it appears I wasn't the only person getting wrong cancer results from Exeter. tut tut.

But here's hoping the scan will tell me it's a 100% remission :)

I was upset the other day as I got offered a small part in a TV show. I accepted and sorted my wardrobe and everything. And then day before the filming the lady tells me to make sure my hair is all pretty so I think hmm... and re-mention my hair is short now and that I have a lovely wig (which was 100% suitable for the role). She takes a look at my wig picture and says how realistic it is and says that's fine.... 30 mins later she re-calls me. Says I'm no longer needed for filming because of my hair. I was playing a waitress. A WAITRESS!! I really hate discrimination. Pisses me off. It also annoys me when I go out shopping and stuff and people stare at me because I have short hair. It's just rude really.

Anyway.... those people aren't worth more talking about them!

I'm excited that I have a lot of positive jobs coming up soon and I should be feeling better by the time they start. Hopefully the rest of 2013 can be very positive.

Here's hoping. Wish me luck x

progress

Okay - So I have managed to get another appointment with my actual consultant (result) and I've now been informed I will get follow-up check-ups, so that's good too. No scans but at least they will check me over every few months. Feel better about that. And I can discuss having a final PET at my next appointment. I made it very clear that I didn't trust my last PET and I couldn't accept remission until I had a PET I knew was 100% mine. And I think they understand that now (I hope).

On a less good note.... I got sent an invoice for some of my blood tests and things. Seriously?!! Since when did I have to pay for NHS treatment? Not impressed really as not one person mentioned I'd need to pay for anything to do with any of my treatments. So hopefully we can get this sorted too. I've let my nurse know and she's investigating for me :)

Now just to have my Port removed and my cervical cells to be sorted and I should be all good.

Remission

So today I guess was a good day... I've not yet figured how I feel about it. Confused I think at the moment. I went to the hospital to discuss stopping my chemo and the consultant said that's fine and that I could go. I was like.... ummm.... do I not get a PET scan? Or a follow up? Or anything? and he said nope. No follow up. No scans. Nothing. Ever. Unless I get new symptoms. So, yes I'm incredibly happy I am in remission but I feel kind of like I was dropped off in the deep end. I really wanted a PET to be 100% sure I was cancer free. But they said no. And I figured I'd get scanned after 6 months or even a year.... but that was also a no. It's a big thing. Kinda scary. I've been through so much and that's it. It's hard to get your head around. I just have to trust them and hope it all works out okay :)

My breathing has become easier and I'm feeling pretty good. I have my appointment tomorrow to discuss what's next (PET scan/chemo etc). Hopefully I can have a PET, the PET will be clear and that'll be that.

I feel quite optimistic about the rest of the year. And I can hold my body weight now on a pole, which is cool. My body is getting stronger and I start a juicing detox in a few days to give my system a reboot after all the chemicals.

I've learned a lot this year and I feel I have a better understanding of my life and my body and mind now. And I think my life will be a lot better because of this experience. And I hope, in whatever way I can, I can help others get through similar things. It seems never ending and torturous but on the other side things look brighter.

There are days still that are frustrating but life is too precious to really worry about it. Things will work out and that's what matters.

Fingers crossed it all works out okay! x

I'm trying to decide what is worse: Pulmonary emboli or cancer. Quite honestly, I find the whole concept of having multiple clots in me (that could decide to move and kill me) a lot scarier than the lymphoma. At least with the lymphoma I knew it wasn't going to move much and my risk of instant death was pretty slim. Yes the chemo is shit (and gave me the blood clots) but at the moment I'm stuck in bed and when I walk about I get out breath. Also got headaches and totally paranoid about having clots in my legs and neck (as these areas weren't checked). I'm sure there are none but everyone says how ports can give you clots and it's playing on my mind. But I've lived through a clot before and I can do it again!!

I want to start being healthy again soon and healing my body - not sure how well exercise is going to go now my lungs are bummered, but I guess I just take it slowly and do my best! And by 2014 everything should be fine :)

For me at the moment the big thing is do I stop the chemo? If my PET is clear and I don't have cancer are the risks of having a cardiac arrest and/or a stroke greater than the risk of cancer? I think most people will agree, the risk of cancer is a better option as I can optimise my immune system through diet and eradicate the risk. Whereas if I have heart failure or a stroke due to more clotting because I continue chemo, I'm pretty fucked for life.

Anyone reading this who is healthy, please don't take your health for granted. Look after yourself and don't make excuses which prevent you from being the best you you can be. I'm reading this book called "Anti-cancer; a new way of life" by Dr David Servan-Schreiber. I recommend it to everyone. Cancer or no cancer. At the end of the day giving up crap and preventing illness is so much easier than being ill. So put down your burger, grab an apple and take up exercise :)

I know that I've been depressive and grumpy recently (it's not usually how I am). I'm just a bit fed up and all of this is a lot of deal with. My nausea has been horrific and I honestly can't describe how bad it is. And now with the clots and the breathing and the extra worry I kinda feel like I've been drowned in poop this year. When I thought bad couldn't get worse, it got extra worse. But I'm praying and hoping it's all good from here. And in a few weeks I'll be bouncing about, happy as Larry!

And then I would like to inspire people to live better. Also would like to go on a very long holiday to a nice exotic beach location where I can scuba and relax and have fun.

blood clots

6 days after chemo.... feel like shit. Incredibly nauseated and can't breathe properly :( went to hospital today to check it out (so not fun when nauseated). Turns out I have multiple pulmonary emboli (blood clots of the lung). Which is crap. So now I'm on fragmin injections. Woop.

I wish my nausea would go away. It's so horrible.