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 :)

hi all,

Feeling less stressed etc today. The emotions you get with chemo are a bit like a roller-coaster. And it's so hard to have patience with people on your bad days. Glad to say my worry about going through temporary menopause is over (which is a relief) :) 

I'm going to have a nice weekend away this weekend in London. We have some free Dungeon tickets so we're going to make good use of them! And we got a hotel for £13 each (bargain eh?)

Then on Monday I have a lung function test to see how they're coping, Tuesday is my mid-chemo PET scan and Friday is my next chemo (if the PET is all good). So kinda a big week next week. Please keep everything crossed for me for the best possible result :D

I have ordered some travel sickness wrist bands in the hope they may help my nausea and I have also bought some ginger chews. They may or may not work but it's worth a shot. I'm still on a mission to find a acupuncturist but one will arise I'm sure. I heard that sometimes it's available on the NHS, so am looking into that also.

I've heard a lot of talk recently about healthy eating whilst on chemo. I just wanted to say to anyone going through chemo, don't worry about it!! I went into chemo wanting to be a juicer and the healthiest person going. But then I discovered this didn't work with my side effects. And sometimes all I can eat is bread or something like that. I know when you have cancer you feel you need to radically improve your life, but do that once you're chemo is over and you're clear. Whilst you're having chemo, just make it as easy as possible for yourself and eat what you need to. I can tell you now, fruit when you have an acidic tummy and a sore mouth is like chinese torture!! 

My boyfriend and I have decided we are going to run a marathon in 2015. I'm not sure which charity to do it for yet though. I want to raise awareness of Hodgkin's lymphoma though as I feel not many people know much about it. I didn't know anything about it until I got it. I believe awareness will be very beneficial. I also want to help other people going through all this. 

Anywhoooo, hope everyone has an amazing weekend :)

Much love x

Yesterday I saw my consultant and we discussed nausea.... they were very lovely and supportive. Although the solution is to heavily sedate me.... not so keen on that haha. But I guess it's better than nausea (if it works). A few of the nurses at the hospital are very good at their jobs and do go out their way to make sure you have what you need. Which is good and nice.

I am thinking of trying alternative therapies for my side effects. Going to deffo start yoga!

Also have some more film auditions - which will be good. Especially if I have some more worked lined up for when I'm better :)

So 6 days after chemo my nausea finally subsided! I'm still a bit bleuh but not half as bad!! I've eaten a lot this weekend just to stop myself feeling queasy. Hopefully I can go back to normal now (until next time).

It still amazes me how little support there is for people 25-40 with cancer. Forgive if this sounds harsh, but there is shit loads for kids. It's kind of like people think it must be easier when you hit 25. It's not. You just have life to contend with too. Like work, relationships, money etc etc. I think there should be more focus on cancer sufferers as a whole. I was told there would be support groups and all sorts and none of it was true. The only thing I found that I could do so was this week away with the youth cancer trust and that keeps getting cancelled because of the stupid hospital. And my youth support lady has called me maybe twice and keeps saying she'll be at my chemo to see how I am and discuss stuff with me and so we arrange a time etc and I go and she never comes. How bad is that? Kinda feel society doesn't care too much. And it's lame. I'm going to make sure one day that there is places for people my age to go and feel normal during this cancer crap. I think it's so important. When you're just finding your feet in then world and you get hit with such a major thing, you need places to go where you can vent and relax and have a laugh. Totally gonna make that happen for others one day!

This isn't me being negative. I just keep getting promised stuff like neet ups wth fellow sufferers my age and then the support worker doesnt come to the meeting shes arranged with me. so im like oooo and then disappointed. It's just really hard to do this chemo stuff. I despise it now. I've been trying to find a place to do yoga and things to help me balance my body and mind. Have had no luck so far. Someone wanted £40 per hour..... I get £70 a week and currently no one wants to employ females with little hair :( it is a bit depressing.

I have (hopefully) just two more months to go. I'm sure ill find the strength somewhere to manage it. I can't begin to describe how horrible ABVD is. And having to force yourself to go through it again is hard. Sometimes I think I could just walk away. But I can't. I need to complete it. My body is just so sensitive to everything and it can be a bit unbearable.

Sorry I'm moaning. Just want to have my life back now or do something fun. Had been so looking forward to my holiday and yeh, cancelled again. It's like one blow after another. Would just like a break.

Anyway - now that's off my chest. Hopefully I will be happy larry again next blog post :)

It's been a hard week. Just letting off steam!

hi all... so on Monday I had chemo number 4. I feel awful still :(  Even those adverts on TV that show drips make me gag. Anything hospital related gets me heaving. bleugh. it's horrible!! But I'm trying my hardest to manage it. I avoid thinking. I think I may look into some alternative therapies though, as my anti-emetics don't work. My brain is too stubborn for them. And funnily enough, I spoke to a nurse who had actually had chemo and she said she stopped taking her anti-emetics because they made her feel worse. and a lot of the sickness does come down to smells and associations.

my half-way scan is booked for the 30th.... then chemo should continue. I bloody hate chemo. I cannot wait till it's over. It gets harder every time and the smells get worse. Even writing this is making me gag.

My sisters wedding was nice... had a few drinks and a dance. shame I had to come back to reality. It was also saddening that some people struggled so much to talk to me. But what can you do eh? Got enough to be worrying about!!

The puppy is being very well behaved. She sleeps mostly on my bad days and is toilet trained pretty much. So that's good. When this nausea passes I will take her out for lots of walks :) But she's tiny so even a brief walk tires her out. I took her for a run the other day and she wanted carrying for half of it. I didn't carry her... lazy dog!!

puppy

Hey all,

Haven't posted for a while as been feeling ok and we got a puppy.... ever heard of puppy therapy? ;)

last week I had insomnia for most of the week. Not sure why as I don't take steroids anymore. I figured it could be my hormones all over the place. As my period didn't start when it was supposed to (still hasn't). Perks of chemo maybe? haha

I have chemo on Monday instead of Friday as I'm off to my sister's wedding this weekend and didn't want to be ill. Might make me feel worse on the chemo after (as it'll be back to a Friday) but I'm sure all will be fine.

Our puppy is called Poncho and she is a Mexican hot dog :) AKA a mini dachshund cross Chihuahua. She's small and fluffy and naughty. And currently chewing my arm.

Anywho.... I shall post again soon. I have a scan coming up and an appointment with my consultant etc.

x

If anyone would like to give me a miniature dachshund.... I would happily receive it :)

Sorry for my delay in posting.... have felt rather rough since chemo on Thursday. It gets worse every time haha. I hate it so much. I feel sick and gag even thinking about chemo now; I can't even look at my port anymore. But I'm working on controlling my thinking so I don't feel so sick.

Nausea was bad again.... started before I even got chemo. I found I couldn't take my nausea tablets as I can't swallow pills when I feel sick. But I think the tablets make me feel worse (which is bizarre). I have some sedative nausea tablets for next time..... hopefully I won't be dribbling in the corner.

My nemesis Dr Sore mouth returned but I have been trying to ignore him. I've had to eat because I've been feeling so sick if I don't eat and I keep getting hot flushes and faint feelings. So eating I have to do else I think I probably would just vomit and pass out. Hopefully it's not early menopause? :/

I'm finding it really hard not being able to work or do normal stuff.... it's boring and frustrating. You'd think with the invention of wigs it'd be okay not to have much hair but not everyone thinks like that. It's really isolating and God knows how people enjoy living off benefits. It's crap.

All these people who complain about having a cold or about stupid petty things really have no idea. I'd happily swap!! I just want to enjoy my life again and sort my career out and make plans and do what young people do.

Bring on July and hopefully remission!

Cycle 2

Day 1 of cycle 2 begins tomorrow.... we're going to discuss all my side effects and try and find some more anti-sickness drugs that may work on me. So it's guinea pig time again!! Today will involve stocking up on anti-nausea foods.

I have eaten far too much this week (damn you Easter) so should probably work on not doing that too often too ;) especially if I want to fit into my bridesmaid dress in 2 weeks time!!

I haven't really adjusted to being bald yet - have yet to remove my hat in public! But hopefully I will have the courage soon.

Wish me luck tomorrow - hopefully we sort these side effects out :)

bye bye hair

so I shaved my hair off as it had started to fall out eek! I had tried to post pictures earlier but my phone wasn't playing ball!! So here ya go :) I'm slowly adjusting! Also went to the dr today and got checked over and he said I have no infections, which is good :) phew! x

It would appear my blog is international - thanks for reading :) Apparently I am more interesting than I thought I was!!

So my hair is still shedding one hair at a time. Why couldn't it be my leg hair? Or armpit hair? That'd save me a lot of hassle! But hey-ho. I'm not sure where the hair loss goes from here or how bad it gets but I suppose now is the time I should consider whether I shave it or not. There must be like 1000 hairs on my head.... they'd swamp my bed. But I'm not sure, after the stresses of this week, if I'm really ready to accept my hair going. So far I've sort of been able to pretend still that I don't have cancer.... it's kinda coming to the point where reality is going to give me a big hard slap. I expected my hair to fall out, especially as my body is reacting so strongly to chemo. But didn't think it'd be this soon.

I think I will be most upset if my eyelashes and eyebrows go.... I don't want to lose those. But so far *touch wood* my body hair seems unaffected. Although I half expect to wake up one morning hairless.

What can you do eh? And these look good feel good classes are booked up till May, which is shit. Might need some make-up advice before then ;) But I suppose at least I will get to go to one eventually. Which is better than what some people get. So I'm grateful for that.

I got a letter today with a CT appointment. Is booked just after a chemo so that's not gonna happen. Unless they want me to vomit all over the Scanner. The thought of ink taste in my mouth when I'm nauseated... ugh. I also thought I was going to be getting a PET, so have enquired as to why I am not. Especially as my bone marrow was active on my last PET and I need to see if it still is. My nurse is going to have so many emails when she gets back from her holiday :p But these things are important and if you don't ask then you don't get (sadly). This is where I am glad I am intelligent... the hospital are probably not so glad!! But I've been fobbed off so many times in my life, on one occassion nearly died, so I take my health very seriously. And I want it done the best it can be. And we all have that right.

If in doubt research and ask :) never just sit on it if it doesn't seem right!

Hair

I have begun to notice I am losing hair a bit more than usual. It's not clumps or anything, but it's more than usual. I have a lot of hair so it's not going to cause any bald patches, but this may be the start of my hair loss (knowing my luck - probably).

I figure once I'm better I can write a book on side effects ;)

My mouth is still healing - wisdom teeth constantly ache but not really sure why! And I'm also a bit sore in other areas but hoping that'll sort itself out. I think my body is just a bit sensitive and I need to adjust a bit more. I had some chocolate today but it wasn't satisfying at all :O but a cheese sandwich was!

Fingers crossed my next chemo will be ok... All these people that say the first is the worst really aren't in my boat!! Lucky sods. But still doing good mentally :) me and my noggin have been through a lot but were still strong!

I promise to treat my body like a temple after this is over. It clearly is sensitive to everything and needs TLC x

My mouth is slowly improving :) still hurts but slowly getting there! You'd hope so with all the medicine I'm putting in it lol.

I've decided that perhaps all of this will help me appreciate how much other people suffer. And it'll help me connect to future acting roles I get too. At least now I am even more prepared for what life has to give. And I hope I can help other people through what I learn.

All I can say is I feel 100 times better than I did on steroids. They are officially evil! I'm starting to get the odd tiredness again but that's to be expected. And my tummy hurts sometimes, but I guess my intestines are getting battered by chemo! Emotionally I am with it though. No depression :) just the occasional pain related moan!

I feel I have complained a lot recently and I apologise for that. Chemo hasn't been very kind to me and sometimes I just need to vent. And I want my blog to be honest and to tell my real story. I wish it was all sparkles, rainbows and sunshine but unfortunately it's not. It seems I react quite a lot to most drugs and it can be really tough!

I currently can't sleep because my mouth hurts and I keep getting random aches and pains in my chest and tummy and all over. And then I start to worry what side effect I'm going to get next. Or if something else is wrong and it drives me nuts!

I've take difflam, aspirin, paracetamol and oral thrush treatment for my mouth and it still chuffing hurts. Wikipedia is so wrong about oral thrush not being painful. I think it's a you have to experience it to understand kind of a thing!

I wish so much that I could be a "normal" 25 year old. Everyone else is off havin fun and I can't even enjoy a sandwich. This year has pushed me to whole new limits and I've been through stuff I couldn't even imagine. I think people who think young people don't have life experience are idiots!! I have far too much life experience for my age :p

But in return for all this struggle I do get the best boyfriend in whole world. I think it's worth that. And if nothing else, this has brought us so much closer together. And not just because we have an army of embryos ;) and I think I'm learning to not let people walk all over me and to not tolerate so much bullshit. I have a new perspective. And I will live my life so much more after this. I think far too many people waste their lives and moan about such trivial crap.

So anyway - I aim to be more upbeat again. Just grumpy because my mouth hurts and I so want to eat yummy food!! Do me a favour and savor every bite of your meals :p I've been watching man vs food and some of those things look so good :p

x

Evil mouth

So today my mouth still hurts like hell. I tried difflam and paracetamol to no amend :( I then decided to call the dr again to see if there was anything else that could be done. He asked if I had a coating on my tongue (I do) and said I have oral thrush (why had no one else thought to check for this?!) so has prescribed me a mouth wash to cure this (fingers crossed). I'm cross that the hospital gave me any old mouth wash without checking my symptoms. Especially with the pain I've been in! But hey ho! Still no caphosol but hopefully the pain will go soon - it's horrible :(

Caphosol

Today I went to my dr to see if I could get some caphosol. It's meant to be amazing for sore mouths (and costs the NHS £125 per bottle). To explain, my mouth feels like someone is constantly pouring jalapeño acid into it. Even yawning hurts. So the alcohol full stuff the hospital gave me is a big no no. Caphosol is meant to prevent and cover the mouth in a fake membrane to help stop the pain. Obviously getting the hospital to give you the expensive is probably mission impossible so I went to the dr and thankfully she prescribed me some :D it arrives tomorrow! Like they say, don't ask don't get!

Also went to the seaside today for fresh air. Me and the other half sat on a bench and watched a mental dog rush around. Was amusing. I did envy the big sandwich my boyfriend could eat. My mouth can't handle bread :(  soon though I shall hopefully be able to have a good meal :)

I did mention my side effects to my nurse this morning but I got the usual "I don't know" and "that's never happened before". Most helpful as you can imagine! I'm a patient person and all that but sometimes it gets frustrating. Especially when you're in pain. But what can you do eh?! I'll just have to ask someone else at my next chemo. It's the eye thing that creeps me out the most!

Lets hope this magical mouth wash does wonders!

Ugh

So it's Monday! Still feel pretty awful :( I spent most of the weekend incredibly nauseated. If you have never experienced nausea, it's hard to explain or understand. But basically, it feels like any moment you are going to be sick. And smells just turn your belly! I think that perhaps my tablets aren't working so well. And sometimes I haven't been able to take them because I've been so nauseated that takin a tablet would make me sick. It's a vicious cycle.

My sore mouth returned yesterday. It's in all it's glory today! They gave me mouth wash to ease the pain but they didn't give me any preventative stuff. I honestly think these nurses must never have experienced any of these things! Preventative beats curative! I'm gonna have to harass some people for some better meds I think ;)

Haven't heard from any of my friends this weekend. Annoys me a little but what can you do?

I might try and go out today and get fresh air. It's just hard because of the nausea I get travel sick and I'm fatigued. But I'm gonna try :) it's a nice day and I think it'll do me good!

I'm so fed up of chemo now! Only been 2 weeks :( got another 14 to go! I felt fine before chemo. Now I just feel like crap. It's shit. I hate it. Hate feeling sick and all of it.  It's horrible.

Now to see what I can eat/drink that agrees with both nausea and sore mouth!

chemo uno 2

Yesterday was day 15 of cycle one and thus chemo number 2!! I had steroids injected with my ABVD but no longer take them orally. So hopefully I won't be so emotional. Still very nauseated and have even less appetite than last time, but doing okay. I have seemed to of developed a weird eye thing when I wake up from naps or long sleeps. Basically I have trouble opening my eyes. It's like the muscles become very weak. It's odd. The left eye is worse than the right. I will ask the hospital on monday what is going on and hopefully they'll fix it. I read it can be to do with neuropathy caused by the ABVD.

Also a bit annoyed that I have to reschedule my holiday as the chemo department don't work on good friday (my chemo day). So I now have to go in on the friday. Ironically they're quite happy to mess my schedule up so they get an extra day off (and got a bit annoyed with me when I said I had plans on the thursday which I now have to cancel/rearrange because no one bothered to tell me) but they're not okay to mess my schedule up so I will feel okay for my sisters wedding. I only wanted to move it from the friday to the monday. Apparently the pills I now take will make me feel awesome and be able to do stuff - how wrong they are!! Chronic fatigue, nausea, dodgy eyes.... really awesome :)

Anyway.... moan over!!

I shall blog again soon :)

Had my pre-bloods done this morning. Getting up for 9am was hard work!! but I did and then forgot my blood form haha. Oh well, the nurse knew what she needed to check for anyway. Hopefully they'll all be fine :)

Headache has gone today (thankfully). So I decided to drive for the first time since chemo. Just popped to the shop down the road. Managed to get pulled over by the police on the way home (typical eh). Apparently I was doing 40mph in a 30mph zone. I explained my brain wasn't really with it as I'm having chemo and the police lady let me off (they were supposed to give me a ticket) so phew! don't judge me ;)

I'm still trying to figure out if I want to shave my hair off or not before it begins to fall out. Some people think i should wait till my pillow is full of fluff and others think I should take control and just do it! It's a tough one. My head has started to really itch so I don't think it's going to be long either way till it starts coming out. But whatever I decide, I have two wigs now :) 

Right.... let's hope I avoid trouble for the rest of my day!

the hangover

I've never had a hangover.... to be honest, I've never even really had a headache!! That was until now...

I think I'm having a chemo hangover (and just in time for round 2 on Friday). Since I woke up this morning my head has felt so painful!! It throbs when I move and I can't watch TV or anything.

Why would anyone drink alcohol if this happened to them?!!!

So glad I don't get alcohol hangovers (not that I can drink any anyway!!)

To be honest, I just have to sigh.

On a plus note - the EVIL steroids have been removed from my treatment. Never again will they enter my body :)

I'm going to go and feel sorry for myself now. I may even take a paracetamol!!

the truth

It has come to my attention that some very narrow minded people in the World think all illness is caused by diet and that the World would be a wonderful, beautiful place if we all just ate fruit. Granted, a healthy natural diet is very beneficial and some people do get ill from eating processed junk. BUT not all people. (Although I do recommend that people eat healthily - just don't go nuts).

Even tribal communities, that eat the most natural diet going, get things like cancer. It just takes one, ONE little cell in your body to mutate and go through mitosis for cancer to start. And there are people who do just live off plants who get cancer as well. So ignorance is not bliss little hippy people. And I think if Hodgkin's lymphoma was due to diet, it wouldn't be so rare to get it. And I can think of a lot of people who eat worse than me. I'm pretty healthy.

I whole heartedly believe my cancer is genetic, due to nuclear radiation exposure passed down through the generations. Which has also affected other family members immune systems. Now that's why nuclear bombs are bad!! But at the end of the day - who knows?!! The scientists don't even know why we get Hodgkin's yet.

Now.... there are some other people I've noticed who like to make money out of this cancer thing too. The all singing, all happy, you can just eat fruit and do loads of exercise while you have cancer people. Let me tell you, although I'm pretty positive, there is nothing fun, happy or even sexy about cancer. Nor do I believe anyone having chemotherapy has enough energy to juice all of their meals and then exercise all day. And as much as I think it's good to have positive things for cancer patients, I think it gives a false hope. Sometimes you really have to be honest!! You can have fun (yep), you can eat healthily (but it's not always easy when your mouth is sore and on fire and you feel like crap and even the thought of a banana makes you want to hurl and water feels like acid), you can be sexy (but you may suffer from bloating, constipation, spot outbreaks, balding, weight loss, depression etc), you can go out running and dancing and skipping (but you may suffer from chronic fatigue and manage a few minutes walking before you feel like an 80 year old climbing a mountain!)

I'm not trying to be negative here - but I don't think anyone should take away the true extent of cancer. It's very easy to pretend that it's easy and make people believe you. But is the worry not then that people who really struggle feel like they are abnormal? When in actual fact, it's probably pretty horrible for everyone.

steroids

I officially hate steroids!! I'm taking dexamethasone and from Monday last week onward (once I stopped taking it) the effects kicked in. I swear I almost lost the plot at times. I became incredibly depressed and emotional. At times I'd also feel very frustrated and angry for no reason, as well as being irrationally sad. You may think this is normal for someone having chemo, but trust me when I say this was not normal!! I am going to speak to my nurse on friday (when I have round 2) about replacing the steroids with something else. I don't want to take them again!!

Aside from this, I'm feeling better now. Very tired still but okay. My emotions are pretty much in control again - still cry at silly things but it's manageable. Going to enjoy my 4 days of freedom till the shit hits the fan once more :)

No rest for the wicked!!

Posty post

I'm running out of titles for my posts.... I will blame my chemo brain!!

My sore mouth is vastly improved today :) Which is good!! I'm still sticking to my simple foods but they're easier to eat. I have, however, seemed to have developed a slight headache. But this may be stress related. It started last night and has continued into today. It could be linked to the fact I didn't sleep well. I'm not sure why, I was exhausted last night, but I just couldn't sleep. I heard that sometimes steroids can do this though (although I'd of though they'd be out my system by now). Or it may be the boredom eating my brain!!

On a positive note, my IBS I had before all this seems to be cured *touch wood* so there you go, ABVD cures IBS!! Or it may be my change in diet but shhhhh either way it's good :) let's hope it stays that way!

I'm glad that so many people have been reading my blog and I hope it's been helpful. A lot of people have said I'm very positive and optimistic and I thought I'd add that, although yes I tend to be that way, I struggle too. And if anyone reading this is feeling low or sad because they're going through something similar, we all have those moments. I have days where I'm cross at life and days where I feel lonely and sad. It's good to get all that out. But I like to think that being positive and believing it's all okay will make it all okay. And it's helped me through a lot of other things too.

I think the hardest thing about cancer is that I was convinced I would never get cancer. No one in my family has had cancer. And I look back just a few months and my life was normal and I'd never of thought for a second I'd be here. I look at my holiday pictures from the summer and think how happily clueless I was. It would be nice to be back there - but one cannot dwell!! And there will be better summers to come :) I think it's all very surreal to me still.

I have lots of exciting plans though :) x

Wig fitting

I now have a wig :) It's nothing eccentric or fancy but I like it. I had the option of about 3 or 4 and I think the one I chose suited me the best. I will take a picture once I have purchased a wig brush. Yes, you need a special brush!! It's because it's plastic and normal brushes make it go POOF!

My mouth is feeling a bit better today and I have bought some slippery foods. It amazes me how much food costs these days but I guess it's a necessity for life. I particularly enjoyed my pasta with cheese and sweetcorn for lunch - trying to add vegetables and fruits where I can.

I'm still fatigued a lot of the time but I expect that's a normal consequence of pumping oneself with chemicals. I have what I refer to as "Jelly legs" when I walk about. It's entertaining when I sit on the floor because my legs sort of just go "flop". I should probably be careful with that!! It's very weird sensation though. I literally feel like jelly.

Boredom is probably my biggest nemesis at the moment. There's no one really about and there's not really anything to do. I have watched the entire Big Bang series. But even that gets boring. I'm hoping I will be okay to drive again soon so I can take myself on a little walk or something. Oh to be a millionaire with a chauffeur.... or just a millionaire!! I would sit myself on my veranda over-looking the sea and then maybe pop into the hot tub or play some croquet ;)

Bring on the summer and the beach is what I say!!

On another note - never buy anything from Electronic World. I bought a TV for my room and the company took the money but there was no TV!! I think they've had three rude emails from me now. Hopefully get it sorted :)

Sore mouth

Welcome to part 2 of chemo side-effects: the sore mouth!!

By sore mouth, I don't mean I have lots of sores in my mouth. On the contrary, it seems to look rather normal. But it burns most of the time. It's most bizarre. I've been drinking a lot of water, which hurts at first but then helps. I also look forward to brushing my teeth, as it seems to make my mouth happy for about 10 minutes :) It limits food preference but I haven't been very hungry anyway so that's not a big deal. It's hard to explain really.... I think the cells in my mouth are adjusting to the chemicals in the chemo and are ultra sensitive. My mouth gets dry quickly and well just feels like it's burning.

Aside from this, I'm feeling better today. Very tired still but okay. I find I have hot flushes and feel a bit faint if I walk about too much. But I think this is also a combination of it being "that time of the month". It's nice the sun is shinning... I haven't been outside yet (mainly because I have no where to go) but I have my wig fitting tomorrow so that'll give me something to do. And hopefully when my boyfriend comes back at the weekend we can go to the beach or something. If it doesn't decide to rain by then ;)

I'm hoping maybe I will get a few days work soon to give me something to do. But it's difficult because I have to plan in advance and that isn't the easiest thing to do. Oh well. Got my holiday with the YCT in a few weeks :)

hey

Hey,

I have survived my first few post-chemo days. I can't say they were entirely pleasant and I spent the majority of my time feeling nauseated and fuzzy. And there are certain foods I even think of and I feel sick.... so let's not dwell on that!!

I'm finding it hard to drink. The taste and texture of fluid is horrible at the moment. Ribena was okay till this morning but I have woken up with the sorest mouth and Ribena seems to make my tongue burn!! I can't see any sores in my mouth but it feels like it's covered in razor blades. Especially my tongue; it feels fuzzy and thick. I've noticed my taste is changing too. Nothing is as appealing. I've mostly found solitude in breads and noodles. They're plain, easy to eat and don't really taste of much and fill you up in a non-nauseating way.

Squash is the worst - all I taste with squash now is chemicals. ugh!! 

I'm hoping my sore mouth will not be long lived!! I'm off the steroids and anti-sickness tablets until my next chemo now so hopefully my head will be less cuckoo too. 

On a plus side - I have shrunk back down to almost my usual size!! Yay!! So my clothes now fit again!! Perhaps all that extra water in me helped flush out the nasty chemo toxins :) 

Today I plan to just chill out in bed and take it easy. I keep waking up pretty early but I get tired during the day and take little naps. And I'd like to give my body time to heal up properly. 

Ciao!!

chemo - day 1

Hello peeps,

Today I had my first ABVD. It went in fine and I felt okay. I took all my anti-sickness meds they gave me and the extra one for "just incases" and then had a little nap. When I awoke I felt horrible!! Nauseated and groggy headed - so I had some ginger beer and an ice lolly. The ice lolly helped. I then had a pot noodle and have discovered it is a miracle cure for nausea!!! Believe it or not....

I don't usually eat pot noodles - It was my boyfriends that I sort of acquired. But I think it may be becoming part of my diet for a while. We now have a few of them ;)

Still a little bit nauseas now but I think it's mostly because I'm fatigued and a bit light headed. A good sleep should do me some good. I may ask for some stronger sickness drugs at my next chemo session. apparently only about 3% of people still feel sick after all the tablets they give you but hey, I'm used to being unique!!

Also found out today my blood type is AB+

All the best for now x

Pre-chemo

Hello!!

today started with my Colposcopy - never trust a nurse who says it'll "Just be cold". When someone puts a mild acid on your cervix, let me tell you, it stings!!! Luckily they didn't take a biopsy though - I have to go back for that in 6 months. Can't wait!!

After my colposcopy I had my pre-chemo bloods taken. It didn't hurt and I have to say that I love my port!! I love it!! Didn't feel a damn thing :D and then I signed my consent.... the usual gloom and doom stuff.

I am still little miss bloated but I'm adjusted. Just praying it'll go down soon. I keep getting back pain so hopefully that means my period is due and it'll all vanish. I bought myself a nice new dress today in anticipation lol.

I'm scared about starting chemo tomorrow but it's something I'm going to have to do to get better. It's just that there is so much unknown about it all. I have no idea what's going to happen or how it'll affect me. It's a massive thing. I have sat and wondered why all this stuff happens to me but I guess it happens to me because I can deal with it. And as Kelly Clarkson often tells us, "what doesn't kill you makes you stronger".

Wish me luck amigos!! Tomorrow is C days EEEEEEK!!

the big week

Chemo day approaches (can't say I'm overly looking forward to it) and I'm still a miniature whale. Tomorrow I go for my PET scan, thursday I have my colposcopy (to check the the odd cells in my cervix) and then I have pre-chemo bloods being done straight after that along with consent signing AND Friday I start chemo.

I still feel like crap. My stomach is no smaller and it's uncomfortable. It's hard to breathe when I walk about and I generally feel nauseas from the pressure build up. I had a scan yesterday and it's not currently life-threatening so they won't do anything about it. But I do have a small amount of fluid around my kidneys and enlarged ovaries. Apparently, even in this condition, it's okay to still begin chemotherapy. So i imagine by the weekend I will be not overly amused. But I suppose it's all part of the experience!!

fortunately my boyfriend is coming over tonight and keeping me company till Monday morning, which will be nice. He usually only sees me at weekends but this week is particularly stressful and as he's not working he's going to help cheer me up. Which is lucky for me. Because it's all a bit much at the moment. I just wish my bloody tummy would shrink back to normal.

If it doesn't I'm definitely going to look like a Buddha when my hair falls out haha

Anyway.... that's an update for now. Hopefully I will be a bit more uplifted in my next post :)

:(

I'm feeling a bit miserable today. My tummy is worse and I got a letter in the post telling me I had an abnormal cervical smear tests with mild dyskaryosis.... so that means tests for that now too!! Is it never ending?!!!

I have, however, managed to get myself a PET/CT scan for my re-staging :) that's due on Wednesday in Portsmouth. Will probably depend on my ovaries though. Here's hoping it's still stage 2.

Not feeling so upbeat at the moment. I guess being stuck in bed doesn't help.

Buddha belly

I had to pop back into hospital for a bit today as I have grown myself a buddha belly!! None of my clothes fit around it so it's PJs all the way for now. I had a scan of my ovaries and turns out they're 5x bigger than they should be. Hence the bloated belly and discomfort I am currently experiencing.  It's something known as ovarian hyperstimulation syndrome. I have it very mildly at the moment. But still: Boooooooooo!!

I am feeling very sorry for myself as it is uncomfortable to walk, laugh, cough or sneeze. And I'm not allowed to exercise or really do anything :( suckadoodles!! 

On the plus side (hmmm) it should all clear up in about 2 weeks.

Update

Hello....

I haven't updated in a while but I've been busy!! Longleat was good fun :)

Monday I had my mid-cycle scan, all was well. I had approximately 40 visible eggs and so they decided I was ready for the egg op on Wednesday (yesterday). So yesterday I went in for the egg removal procedure, I was quite anxious about it. It was done under sedation in the end but it wasn't too bad. Parts of it were really quite painful but I got through it and they managed to remove 32 eggs (the average amount usually being 6 haha). And today they called me to tell me that 22 had made it to the embryo stage. The other eggs hadn't been mature enough to fertilise. I now have to wait till tomorrow to find out how many divide properly and can be frozen, but it's looking really good :)

Because I managed to make sooo many eggs, I have to take it easy now and not do anything as I'm at risk of having over-stimulated ovaries (what fun). I'm currently full on bloated too so feel a bit like a pregnant puffa fish. Could be something to do with the amount of food I ate yesterday (the egg removal made me incredible hungry!!!)

As for the cancer... I have to have a re-staging so my nurse is currently organising a scan for me. Once this has been done I can start chemotherapy (hopefully next week - although my ovaries need time to heal too).

Oddly enough, I'm still feeling fine about the whole cancer thing (perhaps because I know it'll all be fine). I've been more worried about the egg removal!!! All I do know is that I'm going to be a lot tougher.

I hate being bloated!!! Going to have to live in my jim jams till it goes down. Also, have about 6 days worth of food in me still. Must be a side-effect of fertility :/ not that anyone wanted to know that!!! But it's good to be aware of.

I will blog again soon :)

x

This is a picture of my port scar just a week on - pretty good eh? I'm happy with that :)

I'm not happy with the fact my clexane got switched to fragmin though :( Fragmin buuuuurns. And there is 0.4ml more of it!! But hey ho... not much longer to go with the injections.

There was an odd moment with my fertility nurse today.... strangely he recognised me from a zombie acting job, not by my face but by my eyes. I did this job last year and in the dark haha so er was a bit bizarre. I'm not sure how he managed that :p

I have started juicing and adding juices to my diet now. I can't say my tummy is overly impressed but I'm hoping it'll help me in the long run. I know a lot of people just juice and eat nothing else, but I get hungry. So I have healthy snacks too. It really bugs me lately though these people that think all illness is caused and prevented by diet. IT ISN'T!! some things are genetic and some things would happen even if you lived in a bubble and drank organic smoothies with a monkey called Brian. Yes diet can help keep people healthy but I don't think anyone should be quick to dismiss modern medicine when it comes to life threatening diseases. Also.... tribal people (the most natural people in the World) get ill too. Sometimes shit just happens. It's part of life. But you pick yourself up, learn from it and carry on.

That's my moan over.... hope you all have a fab week :) we're going to Longleat (super excited) x

Humbled

Today I found out I am entitled to some fun things (it's not all doom and gloom!!). On the 25th - 29th March my boyfriend and I get to go on an activity holiday (thanks to the lovely Youth Cancer Trust) and then we also get to have a special day out (which I think will be an RAF flight day if we can get in on it) all thanks to The Willow Foundation. At first I thought, well is it right for me to go? I mean, yes, I have cancer but I feel fine and there are people far worse off than me. But then I saw most of the young people that have gone in the past had the same disease. And I'll probably need cheering up and some fun times when the chemo starts. I'm just very humbled that there are people that offer such wonderful things to people like me....

I guess you don't really appreciate what all these charities really do until they're there for you. It's hard to feel deserving for them. But I am very thankful!! These charities definitely deserve your support :) When I'm better, I will do my best to raise some money for them.

There are certain people I'm sure that will have a problem with my boyfriend and I going away to relax... to them, I don't give a crap. To everyone else, thank you for your support. It means a lot to me. I don't feel like I have cancer yet but the chemo will soon begin and it's nice to know that people care. Being faced with something like this is very lonely.... no matter how many people are around you. And that's the hardest thing. But support makes it easier :) 

So bad and exciting times ahead :)

My needle friends!

These are my injections I have to have till the 18th.... then I have some other ones, yay!! They are hormone injections and heparin (to stop blood clots). Yes, I am lucky enough to be in the risk factor for blood clots too ;)

They are self-administrated. The first time I had to do this was quite funny.... I'm a big wuss so I managed to get the needle in and then sat for about 15 minutes scared to press the button (incase it stung). luckily, it doesn't sting and it was fine. Perhaps I will be less of a wuss in future!! I am, however, running out of room on my tummy. but I'm sure I can find a few more spots!

Hair cut!!

My nurse advised me to cut my hair off.... she said it'll help when my hair falls out (she's pretty sure it will). So I have gone for a shorter style. The hairdresser messed up a bit and it's quite a bit shorter than I wanted it but hey ho.

Also.... I know I now start chemo on 1st March 2013!!

Progress :)

So, today I went to see the fertility people again as my period started yesterday. I have more needles than I have ever seen but making embryos has begun. I'm actually quite excited. And, even BETTER, it's only going to take 2 weeks. So my eggs will be ready on the 22nd February!! I don't have to put my chemo on hold for 6 weeks after all *phew*

This evening I also managed to self-inject for the first time ever and it really wasn't that bad. I have three different injections (two hormonal injections and one blood thinner). I will take this up until the 18th, when I have my mid-cycle scan. And then I take something else and then they remove the eggs.

It's quite magical thinking my partner and I are going to create life together in 2 weeks time. Even though they're then going to get frozen for years ;)

I also had my lung capacity test today and that was all great, which is good :)

Hopefully my hormones won't make me too grumpy in the next few weeks!!

cardioscan and portacath

So today I went to hospital for 8.30 am and had my heart scanned. Glad to say it was all normal :) so that's good. It was really quite fascinating having it done; you could hear all the different valves and they all make different sounds.

Once my scan was complete I popped down to haematology for my port fitting.... I had to wait about 4 hours and then finally went in. The procedure, if I'm honest, was painful. I had to lie down on a surgical table and they covered my face. I then put my head to the side and they scanned my neck with ultrasound to find a good vein. They then injected my neck with local anaesthetic (oh my gosh that hurts!!) and then they made an incision and put the catheter in. Once this was done, local anaesthetic was put just above my left breast (even more painful) and then an incision was made and the titanium port was put in. Ultrasound was then used to make sure the port was in the right position and was joined to the catheter. They then did a few other things (not sure what) and I was done.... I then went for an x-ray to make sure it was okay.

This evening I am on paracetamol and ibuprofen and it still hurts.... but I'm assured it'll be worth it. The Dr doing the surgery said she doesn't understand why everyone doesn't get ports because they are the best method of giving chemotherapy. Perhaps it's because each port costs the NHS £2000.... and a PICC line costs £800 ;) 

Anywho.... feeling a bit crap so I'll leave it at that tonight. If you can get a port, get one. I know it sounds horrible but that's only short term. The longer term benefits out weigh the cons.

Fertility appointment

So today my partner and I went to our fertility appointment. We've decided to freeze some embryos, to play it safe, and so we had to get the ball rolling. Basically, it takes a minimum of 6 weeks to harvest and fertilise human eggs. Luckily, I am almost at the 1st day of my cycle and thus it will take the minimum 6 weeks for me (it would really have sucked if I'd of had to of waited longer).

What happens is that you have loads of blood tests done and a smear test done to check everything is okay and you have no diseases and then, from day one of your cycle, you get injected with hormones every day until the eggs are ready for collection. You also need to go for mid-cycle scans and other scans of the ovaries, to see how it's all progressing. Once a good number of eggs are big enough, you go in for an operation. The operation is done whilst you're awake (they give you gas and air) and involves a needle being put into the ovaries and the eggs being sucked out. The eggs are then put into a glass dish and fertilised with sperm (from your partner). The fertilised eggs are then left until they form embryos, which then get frozen.

I have been told the operation will feel like sticking a pin into a testicle. Apparently, ovaries are just as sensitive as testicles we just don't realise it because they're tucked away inside.

At this point in my life.... I wish I was a man!!

Tomorrow I am having my heart scan and my portacath put in.... fun times! I will let you know how that goes tomorrow. Hopefully I will get some sedation, as I'm terrified of surgery under local anaesthetic!!

I have to say that I have the most fantastic boyfriend and I'm very lucky to have such a beautiful person as my other half. And despite what I have to go through, it's worth it to be with someone like that. And now we will have the perfect babies, when we decide it's time :)

What is Hodgkin's Lymphoma?

Hodgkin lymphoma is a cancer of the lymphatic system. There are two main types of lymphoma: Hodgkin lymphoma (HL) and non-Hodgkin lymphoma (NHL). Only about 1 in 5 of all lymphomas diagnosed (20%) are Hodgkin lymphoma. Just over 1,600 people are diagnosed with Hodgkin lymphoma in the UK each year.

In most cases of Hodgkin lymphoma, a particular cell called the Reed-Sternberg cell is found when cells from the lymph node are examined during diagnosis. This cell isn’t usually found in other types of lymphoma.  It’s thought that Reed-Sternberg cells are a type of white blood cell - a B-cell that has become cancerous. B-cells normally make antibodies to fight infection.

Hodgkin lymphoma is not infectious and can’t be passed on to other people.

The cause of Hodgkin lymphoma remains unknown.

Decisions.... descisions

Waiting for everything to start is quite a depressing time. I try and stay positive and optimistic but mainly I just feel tired and worn out. My thumb has been aching a lot and, considering I had my operation over a month ago now, I wish it would stop!!

Today my nurse called me as I had asked multiple questions yesterday, when I went for a chat with her. She has told me I can have a heart and lung function test (good news) and also that I can be referred to a fertility clinic. Now, I want kids one day and so having the opportunity to preserve my ovules is fantastic... however, it does mean I may have to delay my treatment by upto 6 weeks. I have been thinking this over quite a bit. I clearly don't want my cancer to get any worse but I really do want to protect my future. So I think I'm going to go along to the fertility clinic, ask a lot of questions and then decide. I will probably opt to have my ovules frozen though. You may wonder why.... well, I don't think my cancer is very fast moving and in the 2 months I've already waited, it hasn't really progressed much at all. So an extra 2-6 weeks probably won't do much damage. And also, it's going to take about 2 weeks for me to get my port sorted anyway!

I don't really know what the future has in store for me but all I do know is, I want to make the best I can out of it. I never really thought I'd be in a situation like this. I'm scared of the chemo and all these operations and stuff... but I'm sure they'll benefit me in the end.

All the best for now :) x

staging

On Monday (21/01/13) I had a CT scan of my neck, chest and pelvic area. Today I then went to meet my haematologist and get my results. He said that I had lumps in my neck and thymus and that, on that alone, I was stage 2A Hodgkin's lymphoma. He mentioned wanting to give me a bone marrow test but then decided not to (phew) as all my blood work was normal. This made me very happy!!

They were going to give me a PICC line but my preference was for a portacath and so I have asked to have one of these put in. The consultant agreed and now I am waiting for a date for the port to be inserted under local anaesthetic.

The consultant also mentioned something about another blood test he needs to do but is waiting for the right blood pot to be sent to him. That may affect my staging but he said he won't change when my treatment starts. Luckily it won't start before my birthday :D

Mostly I am worried about the chemotherapy as I don't know what to expect and it's quite scary. It's this big unknown World to me and I have absolutely no choice but to explore it. I'm sure everything will be fine but there's a lot of apprehension in me. I'm sure that's normal.

The Dr said I will be starting off with 8 treatment of chemotherapy. So that's 4 months worth. I'll then be assessed and see how I'm getting on.

As I'm 24, I have some really lovely youth nurses looking after me. They're so sweet and nice. And they've said I can have massages and things whenever I like at this special clinic :) Clic sergeant are also helping me too, which is fantastic and I'm really grateful. 

So scary stuff ahead but I'm sure it's better than I think.... I'll keep you posted x

Limbo

I am unsure how to feel at the moment. My life seems to have stopped. I'm in this strange land between diagnosis and treatment and I don't really know what's going to happen next or how long I will be ill for or what this years is going to hold for me.

The entire of 2013 so far has been not so nice. I buried my nan on the 4th January and was told I had cancer on the 7th. I don't think I've fully absorbed it all yet. Some days I feel sad. Some days I feel nothing. It's bizarre.

My arm is still aching like crazy after the biopsy on my shoulder. It's been over 3 weeks now. I also have not gained full feeling back in my thumb; it's just sore and pins and needley. It's a pain in the bum and sometimes stops me from sleeping because it aches so much.

But alas, I will not let any of this defeat me!! I know that I will kick this cancers arse and it'll all be fine. I just want to get on with it. I have cancer - there is nothing I can do to change that. But i can use this opportunity to better my life and understand what others might be going through. And I know that chemotherapy (or whatever they decide to give me) will stop me from dying and I embrace it. I have so much to live for.

My advice to everyone is to live your life. Don't stay in a job you hate or do stuff that makes you sad. Find what it is that makes you smile and makes you happy and hold onto it and follow that path instead. I'm 24 years old, I've had epilepsy, a giant pulmonary embolism and now cancer. Trust me when I say anything can happen to you, so don't waste a minute of your day. Life is so beautiful and so precious and the World is so beautiful too. Yes, shit happens. But you have to focus on the good and the positive. It's what makes magic happen :) 

when I am better I am going to continue to act. And I want to see more of the World and just be with my boyfriend and be happy and do everything we ever wanted to do. I'm also going to eat so much more healthily and take up more sport. I will learn to love running!! haha

The hardest part of all of this is feeling alone. It's difficult because no one around me knows what I'm going through and most people don't know what to say and it's very lonely. I get sad sometimes because I feel like I have no one I can really talk to. And I also feel sad because everything I planned to do this year is slowly going down the pan. Which is a horrible feeling when you have an amazing job lined up - I hope so much I can still do it and they'll understand.

I'm so glad I have such a lovely boyfriend. He is the best :)

Adios for now Amigos!

Diagnosis

Five weeks ago I found a large lump just above my left collar bone. It was hard, fixed and painless. When I found it I instantly checked my right side to make sure it was normal - it wasn't. So I headed off to the hospital walk in centre for them to check me over. The Dr told me to have blood tests and await the result. 

My bloods came back normal and so I was referred to an ENT specialist. On the 17th December I went to my first ENT appointment and the surgeon took a fine needle aspiration from my lump (which my friend named Jeremy). I then had to wait for the FNA results. These came through three days later and were inconclusive. 

A further appointment was then made for me to have Jeremy removed. This was to happen on the 27th December (something to look forward to over christmas). My lump was removed under general anaesthetic and took two hours (due to the nerves in the area etc making it risky). It was slightly larger than a golf ball and was a swollen node.

I then waited, whilst feeling slightly pathetic because I couldn't use my left arm for a bit ;), for my biopsy results. On the 7th January I was told that I have nodular sclerosing Hodgkin's Lymphoma.

ENT have now handed me over to haematology and I'm just awaiting for my appointment dates for staging and further scans. Once these are done I will be starting chemotherapy. I'm a bit scared about having chemotherapy but I know I will get through it all and be a better person for it. I just want to get on with it now.

Whilst I'm waiting I'm going to re-decorate so that everything is really clean for when my immune system is lowered. 

I have attached some photos of my lump to this post, so that it may help others in the same situation. 

I am 24, female and had no other symptoms other than fatigue.