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