Blessed

I just wanted to say that I feel blessed. It feels like only yesterday, but 6 months ago I stopped having chemotherapy and I got to move on with my life. Other people aren't so lucky and I am thankful for the health I have now been given (fingers crossed it continues to improve). I still get tired and emotional at times, but I have learned so much. I have learned how to be stronger and how to appreciate the smaller things. It's made me truly consider what is important and what I want from my life.

I sat and asked myself, if I got ill again and there was no cure for me, what would make me disappointed that I hadn't done it? And then I realised it's those things that I need to do and to not live with regrets, but with hope and appreciation and wonder. 

Life is precious and so many people waste it doing things they don't enjoy and missing out on the magical moments. For me, I really want to travel and experience the World and culture. I also want to make a difference and help protect endangered animals and save nature from our destruction. And perhaps be a very successful actress too ;) Not much then, right?

It's funny how I see the World now. I drove across a river in Cornwall a few weeks back and the serenity of the moment made me cry. I suppose being ill makes you feel vulnerable, when before you feel like nothing can break you and it will always be someone else. Especially when your 24.... 

I have so much left to fulfill in my life. So much good to do. And I just hope I can achieve it. Not all of it will be pleasant, but it will be meaningful and that's what is important. Sometimes it's the road untravelled which is the best route.

I hope that others can learn from me to appreciate their lives and to do what they love, not what they think they need to do.

Thank you, to whomever gave me the chance to live. I am grateful.

Hello :)

I haven't written in a while so thought I would. I am doing okay. Still on the warfarin and get tired very, very easily. I hear this can last some time after chemo. But I am exercising and this week I started Jason Vale's 7 day juice detox. So I'm hoping that helps my body heal.

It's been a tough year but I hope soon things will sort themselves out and I can start working again etc and really get on with life. i have so many plans and dreams.... it's time for them to happen :)

Today I have my woman's health appointment - hopefully that's all normal this time too. Fed up of being probed.

Anywhooooo, hopefully things are on the up! My hair is growing back (which I'm excited about) and I have some muscle again.

x

Woop woop

So a few weeks ago I had my final pet. The results are in: clear :) I am so relieved!! I was terrified I would still have cancer and so am so happy that there was nothing there.

I am now looking to get back in shape. It's hard because I still have the clots in my lungs but I am trying my best at the insanity work out and I am eating well. Chemo makes a lot of people put on weight, which I did, and I think it's nice to take back the control! Also, I want to minimise ever getting ill again. I plan to stay healthy :)

Sadly friends have not improved. Not even a congratulation txt. Too busy getting drink I'm sure. So I am off enjoying my life and I will make friends that actually care about me. It's made me cross and its upset me. And now I'm over it. I can't even be bothered with it. Just remember, there are lame people in life and things like this show you who those people are. There are also amazing people and I know a few of those too and things like this make you cherish them more.

Also, you meet you new people. People who help you and inspire you. And I'm thankful to have met some of those people. Thank you to them. It means a lot to me :)

Now I am off to pick up some undies from m and s. that's how I roll.

I am so happy I can enjoy this lovely weather and not have to have chemo :) it would have been horrific. So thank you life for saving the weather for when I was chemo free!!

Anxiously waiting my results on the 25th but I'm sure all will be fine. In the mean time I have been eating better and have ordered the Insanity workout to get myself back in shape. I'm also working on my freckle collection (I don't tan - I just get freckles!!) Except my feet.... my feet tan. Makes for an interesting look.

I have decided to slowly ween people out of my life that have only really given a shit about themselves. Hopefully soon lots of work will appear and I can start earning and create a new life for myself. That will be good. In with the positive :) and the good :) and the fun :) It may take a while to totally get my confidence back and feel great but I will get there. It's been tough but I know I can get through a whole load of shit now. People seem to think that once you stop chemo you're fine. It's not true. You get depressed and stuff and need cheering up still. But life is sorting itself out.

Lots of love and positive thoughts to all you guys fighting cancer or recovering from it

xx

catch up

Hey,

So I haven't blogged in a while, but thought I would catch up tonight. So last week I went away with the YCT in Bournemouth. It was really nice to meet other young people who had had cancer and it was great to socialise and get away for a bit. We went water boarding, banana boating, horse riding.... all sorts. It was a good laugh. I do still think it's a shame though that this is the only thing offered to people upto 30 years old. But I'm working on changing that :) And hopefully one day there will be stuff for people of all ages. Especially young adults upto 40 who really need the support.

Today I had my PET scan so have to wait till the 25th to find out the results of that.

Weather is good at the moment so thinking about doing some outdoor activities. Not sure what yet. Really need to get fit again and healthy. Is important!!

Anyway - that's all that's really happened recently. Just trying to sort my life out.

My hair is growing :D so I really will be annoyed if my cancer is still there because I don't want to lose my hair again!!

ouchie

My port is now gone (and hopefully for good). The operation hurt a lot. I was not sedated at all and pretty nervous due to the experience of having it put in. I lay on the operating table and they stuck in the dreaded local. But at least I had someone talking to me this time and I didn't have a big cloth over my head. Which was an improvement. Straight after the anesthetic was in the surgeon picked up his knife. I looked at him and asked if it'd be numb that quickly. He assured me yes. It was not. I felt very much the knife cut open my skin. This followed with me saying OW very loudly. The surgeon then gave me more local anesthetic. The rest of the op was bearable but painful at times. It hurt when he squeezed the port out and I could feel the needle at intervals when he was stitching me up. But overall, it took about 10 minutes so at least it wasn't prolonged.

I then went home and was happy because it didn't hurt at all. Yeeeeeah, this wasn't long lived. By about 9pm I was in a lot of pain. I didn't sleep till about 4am because the incision was throbbing and would sometimes burn and send a shooting pain out. Worst of all, I'm not really supposed to take any pain killers because I'm on blood thinners soooo I avoided those.

But hey-ho. I am still sore today but glad my port is gone. All is left now is to get my final PET and hope for an all clear :)

I've learned a lot this year and I've learned a lot about a lot of people as well. And I know that when I get back on track and everything starts to fall into place, things will be very different. I don't hold grudges or resent anyone. I've just lost a lot of respect for some people and it has been hurtful but having cancer has shown me a lot of truth. And I can go on and live a positive and happy life and know what truly matters. It's hard to accept everything that has happened sometimes and I've struggled with that. But I know things will pick up soon :) Obviously I have 6 months of blood thinners and what not but that's not the end of the World. I feel lucky to be alive and (although I've become extra emotional) I know this experience has benefited me and made me a better person.

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.

3b

Had my 6th chemo on Friday - threw up again and feel like absolute shit still. I am so fed up. I can't shift this nausea and vomiting, which keeps getting worse :( I've tried it all now and yeh.... doesn't work. I can't begin to put into words how horrific nausea and vomiting is. I figured I'd reached the worst it was gonna be but this time proved me wrong. Just wish is was over with now. I've had enough. I'm pretty much bed bound because when I move I need to be sick.

I don't think anyone really gets what a shit time it is either. They act like it's all daisies and butterflies. "Only two more to go, nothing to worry about!" - well you try having two chemotherapies and vomiting your guts up and your whole life just stopping and everyone just acting like nothing is wrong. Stuff is wrong. I'm having chemo.... I need support. I need comforting. I'm not made of metal.

Just had enough of all of it this weekend.

my wig

Ages ago i said I'd post pictures of my wig.... so here we are :)

bleugh

I had chemo again on friday and had a chit chat about the PET screw up. My consultant couldn't 100% guarantee which PET was right/wrong if it in fact either were mine but he's pretty sure the one showing no more cancer is the right now. I had a look at it myself but couldn't really make much sense of it. So it's pretty much wait 2 more cycles, have another PET and see what it says then. My hope is that in 1 month and 10 days I will be vomiting from my last ever chemo!!

So I was told to take ativan (2mg) before my chemo on Friday and some other sedative. I vomited twice whilst the chemo was going on (god I hate chemo) and felt like shit. But slept for most of the weekend and don't really recall much of what happened. Today (Monday) I didn't take any sedatives (mainly because they make me too drowsy and then emotional when I wake up confused and disorientated) and have felt pretty nauseated all day. I'm wearing travel sickness bands but they're pretty useless. funny thing is I seem to need to eat more for the first few days after chemo and that helps with the nausea if I eat stodge like bread. not sure why. All I know is hunger make my nausea worse (I'm not normal).

My mouth is starting to get sore and I'm having hot flushes again but hey ho.

I have discovered that marks and spencer do fantastic lingerie for my bloated chemo body. Nice and comfy. Makes me feel less so stodgy. And the puppy is the best puppy in the world now. She's adorable and comes and cuddles me when I'm sad and is toilet trained and loving.

My boyfriend and I are going to Pula on Saturday for 3 days just to get away for a bit - will be nice. Hopefully sunshine, ice cream, pizza and beaches :) Then back in time for blood tests and more chemo. Yay!!!!

I can't begin to say how fed up I am. My emotions have been up and down and I've just had enough. But I'm getting there and I'll get through this.... slowly but surely.

OMG

Miracles do happen!!! Today my consultant called me (i bet he felt awkward) to tell me they royally fucked up. Basically some stupid radiologist read my PET scan wrong (how? I do not know) and I don't actually have any cancer cells left in my body :D and I don't need a SCT :D buuuut I do have to continue with the evil ABVD for another 2 cycles. BUT this means all my plans can still go through and yay.... I'm happy about it :) :) I have been beside myself with worry about my treatment and really distraught so, although I am cross I was put through that for no reason, I am glad they were wrong!!

so here's back to hoping for remission in July.... WHOOP!!

next steps

I had my consultation today at Exeter and discussed what's next. My consultant said that I could have ESHAP followed by BEAM followed by a stem cell transplant or BEACOPP. He advised I did not have BEACOPP as it's still in trial stages and he doesn't know what the long term side effects of it are yet, or how effective it is. So he suggested I go for the stem cell transplant of my own stem cells. As BEACOPP could be a waste of time that does me more harm than good. And he wants to avoid giving me pointless chemo. So I went with is know - how and chose to go the stem cell route.

So now I have to have a biopsy to double check the active cells are still Hodgkin's and then I will begin ESHAP chemotherapy followed by BEAM and then the stem cell transplant. Hopefully this will irradicate the cancer. Fingers crossed!!

I'm not entirely looking forward to it but at least I get two weeks off now to enjoy myself before the crap happens again. So that's a positive I suppose.

and maybe it's not even cancer eh? Although I won't hold my breath.

Fuck it

Bad news peoples... the cancer is thriving! ABVD hasn't worked ahhhhhhhhhhh!! so tomorrow we're going to discus my options. I am obviously mortified and thought because I had been so poorly with the chemo that the cancer would be dead. But it's not and the chemo has done nothing but make me feel sick. I guess I just wait and see what my options are and find out how bad it is. I hope it hasn't spread too much or anything. Please pray for me or whatever that what we try next works. And I will keep on blogging....

mid chemo PET

Today I had my half-way PET scan. Fingers crossed all is as expected. not sure how I would take "it's not working". So not going to think about that!!

We went to london at the weekend and saw 'Rock of ages'. Was amazing and hysterical. Even better than 'We will rock you'!!! We also went to the new Dungeons (because we had some free tickets) and they were pretty cool too, although still kinda the same as the old ones. And we tried a corn dog for the first time. They're pretty tasty!!

Tonight i am going to make the most of my time off work and do some dance classes. I'm hoping they will help me focus my mind and not feel so ill after chemo too. Also put on 4kg so be nice to try and keep my body as fit and toned as I can. God knows how i put on 4kg!! I'm pretty sure it's the chemo as I haven't been eating more than usual. Or the hospital scales are wrong haha.

So anyway, tonight is pole dancing (but for fitness). It's meant to be fun. The fact I have no upper arm strength is beside the point :P

I forgot my wig at the weekend and I felt a bit awkward going to restaurants and bars with a bald head and it made me feel sad that I didn't have hair but hey ho. i suppose it was a reminder to me what I'm missing. Especially watching the theatre, I would love to be doing theatre again! or any acting job. But in August i will, so not long now :)