Why I'm an advocate for the flu vaccine

In 2014 I contracted the flu. My immune was still down from chemotherapy, and I stupidly, completely forgot to get the flu vaccine. This was probably one of the biggest regrets of my life. You see what most people consider "the flu" is a mere cold. We are prone in Ireland to believe that the flu is quite common, we use the word nearly in every day life to mean we are feeling unwell. We think common colds, when bad, is the flu. Not everyone will even contract the flu in their entire life. Because of this, we have downgraded the virus in our society, the lines are blurred.

I was on a high finishing treatment for Hodgkins lymphoma, ready to get my life back on track with college and work. I wasn’t thinking about the flu, or the flu vaccine, or anything medical at all.

In 2014 I contracted the flu. I thought cancer was bad enough, I thought Ehlers-Danlos syndrome and my comorbid disabilities were bad enough ...but I was about to find out how unwell I could actually get. Weeks of delirious shaking and sweating and sleeping eventually subsided. Eventually I could stand up without falling over, eventually I could speak properly.

FUCK YOU, BELLE GIBSON

Some months ago I came across yet another health guru spewing the usual crap of TOXINS and CHEMICALS (OH MY!), and using such words in a way that you immediately know they have little concept of what either term actually means. Except this charlatan was different. This modern day snake oil salesperson was caught out, in a very public way. 

Source: Facebook

For those of you that don’t know, bushy-tailed, bright-eyed Belle Gibson created an app (and later a book) called ‘The Whole Pantry’. In this she began her mountain of lies -having brain cancer, her cancer spreading all over her body, saying no to conventional (IE real) treatments and insisting that she was being kept alive by whole food goodness, #WokeAsFuck and all that. In 2015 media investigations revealed that not only had she fraudulently collected money telling her followers it was for charity, but she had in fact made her whole cancer story up from thin air and even lied about her age as well many other details of her life. She was a pathological liar, wanting fame, attention, pity and a quick buck, and it wouldn’t stop there. 

She lied for years about having cancer and made up doctors - Source: The Whole Pantry

When pressed in interviews she blamed other people (including imaginary), played the victim, tried to distract from the questions being asked and most importantly -played down her role in persuading cancer patients to follow her example; health advice she had dished out so easily with little regard for others wellbeing. And that really is her biggest crime of all. She spoke directly with cancer patients and give them hope and guidance, she pretended to be one of them and stood as a beacon of health and wellbeing. She preyed on the most vulnerable and right out lied that she could prevent them from dying, as she had done with herself. 

But we aren't blameless here. We are a gullible society, wanting to believe in magic and fairytales, too lazy to look beyond and question, too egotistical to say "I don't know enough about this topic" and maybe we should listen to the real experts. We want hope and romance and we want it delivered by blonde white women in stylish clothes.

The wonderfully funny and annoying world of brain fog

...Or "mind mist" as I once accidentally called it!

For those who don't live in the realm of chronic illness and/ or chemotherapy, let me first explain the concept around "brain fog"/ "chemo brain"/ "mind mist", or whatever non-medical way you want to phrase it. I would even throw "baby brain" in there, as I imagine it's quite similar.

Everyone has those moments where they walk into a room and forget why, can't think of the right word for an object, have no idea where they left something important or simply lose their train of... thought. But "brain fog" (I actually went to write "brain flog there" -seriously) with illnesses is different -it's pretty much constant, and even though it can take several forms, it can be quite severe. It's more than just the normal mix-ups.

Usually there is no known cause or explanation for the phenomenon, and it's not generally medically recognised. I suppose in most cases it's something that isn't easily studied or monitored. During chemotherapy I put it down to, well -I've cancer... knowing that you have cancer is pretty distracting to say the least. Of course people with cancer have preoccupied minds.  I assume with certain conditions that effect blood flow and/ or oxygen to the brain, such as orthostatic intolerance, that the reason for confusion is a pretty obvious one. I had heard of the term "brain fog" within the chronic illness community before chemotherapy, and recognised that I had some issues (mostly forgetting where I left things!). But the first time I had actually heard a medical professional discuss it was when I was diagnosed with cancer -"chemo brain", as they called it. But other than that, doctors don't really bring it up. It's important to note that it is not a medical diagnoses, rather than an annoying, sometimes humorous symptom. If you suddenly develop this and have no idea why, please see your GP immediately so all possible underlying issues can be explored.

For me, since chemotherapy, my fog has grown to absolute mind farts. I can't recall the name of a lot of items, varies on the items from day to day of course, but it is constant. It's fine/ doesn't really effect my general life in a negative way. If anything, me and Bicky get quite a laugh from it. For others, depending on the reason for the mental blocks, it can't be very scary and worrying. The above example in the first sentence, is actually a true case -I had brain fog, about the term BRAIN FOG. Seriously.

Here are some other fine examples of what I'm talking about, from friends, fellow spoonies and fellow bloggers (as well as some of my own word bombs):

From potato to curly fries: Hair re-growth after chemo

As regular readers will know, I was diagnosed with Hodgkin's lymphoma in December of 2013, and subsequently, shaved my hair off (video here).

When I was all baldy and potato looking, I naturally enough Googled how long re-growth generally takes after chemotherapy -and yes, obviously, everyone is different, but being human I absolutely love general guidelines. And the internet did not disappoint. Even better was hair stories with photo montages! Who doesn't love a montage? (*Que the montage song from Team America being stuck in your head for the rest of the day*).

Sleeping baldy -Why I miss chemo

Oh blerg.

It's one of those days/ last few days: hip at me, extreme fatigue, general zombie mode. And I can't even blame the cancer or the side effects from treatment. It's times like this that I miss the chemotherapy -best pain killer ever, as I said before. I'd say I could be the only person in history to make such a statement (missing the chemo), but it's bloody true!

I set my alarm today so I'd wake up early (to ya know, do normal shit and actually have a life), which I did, although then immediately fell back into a coma. Blerg, blerg, blerg!

The last few days I seem to be working in rotations: One day ok/ can get up and do stuff, the next day coma, next do stuff, coma, and so on... any other dysautonomia/ illness heads get this? Think I prefer the general on/off good/bad phases. This type is hella annoying. Hip and knee pain is decreasing though -hurray.

At least it's raining today... don't feel like such a lazy hermit when it's raining outside!

I miss the real world.

No animals were harmed in the making of this blog post

Many, many stupid people were attacked however.

-Like a lot of animal lovers, I think it’s safe to say most the time I prefer animals over humans. This is one reason that I've recently decided to take the jump from pescetarian to vegan. In general, for many reasons, it’s been something I have been considering for a while now. The main reason being, well, simply, I have nothing against animals. In fact, as I said, I really quite like them. I wouldn't wish death and torture on my worst enemies (most of the time anyways… we all have our killer moments), so why would I agree for it to happen to an animal I don’t have anything against? By eating meat, their milk and eggs, I'm simply saying its ok to torture and kill them, that I agree with that system and support it. I really don’t. So it’s time my actions fully reflected my opinions… simple as that really.

Oh and of course the obvious health benefits. And NO, I do not think food can cure cancer (fully, as in an actual, real cure) but YES of course, obviously, fruit and vegetables are the best thing you can possibly eat for your health and YES this in turn will prevent many diseases such as cancer (sometimes. we also have genes, environment and plain old bad luck to consider! Not every cancer is the same, not every cancer has the same treatment... etc., etc., I could go on but I want to believe you know all this already) –Just wanted to quickly clear that up; I am not, and never will, endorse any claim of simply having a healthy lifestyle to rid cancer. In my opinion, such things only work in conjunction with the advice and treatments from the real professionals. And supplements can be harmful with treatments, so always check first.   

I look like a potato -A kawaii potato

I found this picture on the internet a while ago, and honestly, laughed for ages… this is very much me at the moment, BAHAHAHAHAHAAA! :)

If you know me/ friends with me on Facebook, then you've probably already seen this video of me shaving my hair. I posted it mainly for friends –to see that I'm not deeply traumatised by losing me hair! It’s a weird thing, cancer and hair lose… effects people in such strange ways. I don’t mean the person actually going through it, I mean for the friends and families. 

I was only ever hesitant about shaving my hair off because

The end of treatment –The beginning of recovery

Thought I better split all the craic from the last while into two, as not to bore yas all too much with extra-long posts… again, apologies at sucking at regular blogging.

So as you may know, or have guessed, I have finished chemotherapy :) (For now/ hopefully forever). Here’s some tweets from my last day…

Exciting stuff.

Speaking of which, I’m waaay better at updating Twitter, so if you fancy following me you can do so here: @kittypotpie85

But of course, then came radiotherapy –BOOOOO! Three weeks, Monday-Friday, in Dublin. Worrying about us affording petrol for all these visits, Bicky (Simon) applied for help from The Carrickmacross Cancer Society who paid for a taxi service for us, for the whole three weeks! Seriously, absolute saints. Please give these angels a ‘like’ on Facebook and support them: Carrick Cancer 

….Speaking of money issues, I still DO NOT have my medical card. Yeah, seriously. Long story, so I’ll write up another post on this at a later stage…

For those that don’t know much about radiotherapy and wish to know what it entails, go here: External Radiotherapy 

Like with chemotherapy, there are some side effects, although most people find

Please don't PICC me...

Having a minor freak-out today about having my PICC line inserted tomorrow.... I know, I know -"It'll be worth it", "No more burning veins during chemo... the actual treatment will be faster... no more painful poking for veins that still work", BUT, that all said, still looks like a bloody horrible procedure.
Yeah, I looked up videos on YouTube like a big feckin eegit. Did not help me. At all.

For those interested, here's a video: PICC line insertion
And some info on what a PICC line is: PICC line (peripherally inserted central catheters)

Yeah so having cancer, not a huge problem for me apparently -but getting a relatively minor procedure and I'm being a massive whinge-bat (is that a term? I think it is). Glad to see I have my priorities in order, har har.

I think with all the horrible vein experiences I've encountered the last couple months, I really just don't want any more.... but it'll be grand...

I've heard mixed experiences from people online who've had it done -some said it's just uncomfortable, others quite painful.... I'm being a huge baby right now I know, haha! Just have to remember that.

...And breathe, Kitty, breathe!

Mid-way PET scan, exercise and other shenanigans

Sorry to my followers that I haven't been on here in a while -all is still good in case yous thought I was too ill to type :) Have just been trying to enjoy my time off college and work (have decided to defer); although still feel a bit like a useless bum!

So, the latest cancer news: Had my mid way PET scan last week and received results today from the haematologist.... everything is on track, the cancer is reducing and he said he's happy with the results/ it's what he'd expect at this stage. So, brilliant stuffs! I wasn't very worried anyway -I know from the online groups I joined, that even if the cancer had spread, Hodgkin's lymphoma is still very treatable and can just sometimes take longer than expected. But this is great news altogether! Continuing with the plan of 4 cycles of chemo, then radiation. Still to have a meeting about the latter and find out how much. I'm now on my third cycle of chemotherapy.

Chemotherapy side effects: Still doing relatively well with the whole side effects -have been very much so blessed in that way. Previous hip/ leg/ back pain, spasms and stiffness are still actually benefiting from the chemo drugs and have yet to go through a 'bad phase' since starting my treatment.... I'm going to be such a bitch when I finish and the pain comes back, har!
The dry rash on my hands has now progressed to swelling, mainly around the nails, and is causing some pain and numbness. This is apparently due to the drug that burns the hell outa me.

PICC insertion: The haematologist has said that I really should get a PICC line inserted because of this, and my general shit veins, so he's booking an appointment. For those that don't know, the PICC line is a semi-permanent tube inserted into the vein in my arm and up my chest, which will allow for a much handier drugs treatment as they won't have to poke the feck

Acupuncture for chemo side effects

I've been going to acupuncture for my chemotherapy side effects since I was diagnosed -before I even actually started the chemo, and I think it's helping loads! So just wanted to give a big shout-out to Acupuncture4Health. If you're on Facebook, please give their page a likey by clicking here: Facebook - Acupuncture4Health and if you live in Co. Louth, Co. Monaghan areas (Ireland) and ever in the need of acupuncture for whatever reason, I highly recommend here :)

Thank you please!

...So I'm interested in knowing, any chemo buds who are reading, have you tried any/ many non-traditional medical alternatives for side effects? And if so, what's your views? Post a comment below. Or even if you've tried said alternatives for other reasons, or simply have a general view, feel free to post too.

Survival guilt, feeling like a fraud, and viewing disability as a personality trait

Again I'm posting on two issues here, comparing my older illnesses with my new (and hopefully temporary and short-term) condition of Hodgkin's lymphoma.

1. Survival guilt
Usually reserved for those who have well, actually survived cancer or illness and came through the other side, I think I actually began to have this feeling from my first chemotherapy session -if not even from diagnoses.

I wouldn't say I was in denial about having cancer, or that I am now, but the reaction of the doctors made me feel that not only would I probably be ok, but that I was lucky. This is all well and good, and I do definitely believe it! However, that little fact only helps to produce feelings of guilt in me towards sicker people... particularly when I go to the chemotherapy sessions. You see people who are clearly sicker than you, you overhear conversations of the types of cancer they have, of their stories, of the horrific amount of times they have went through treatments. That's when I feel like a fraud.

2. Feeling like a fraud
Now, don't get me wrong blogger friends, I aint totally crazy. I do realise that I also have cancer (again, not in denial, folks) and that these feelings are quiet ridiculous -although at the same time, probably quiet normal. AND I realise as my chemotherapy sessions progress, I will indeed feel, and look, sicker -unless I'm one of those freaks who gets hardly any symptoms. Please, let me be a freak!

...but that's the thing I guess, the old issue of  "Oh, you don't look unwell?", going back to the hip dysplasia and associated issues (and perhaps some un-associated issues). From work colleagues, friends, and general people. And don't get me wrong, most the time people didn't mean any harm -I am aware of that. And I know that looking healthy should be a positive thing! But in all honesty, it can be hella annoying at times. Trying to explain to someone why you can't physically do something and they're looking at you

My new treatment plan

Yesterday seen the start of my second round of chemotherapy (my third actual session -2 treatments in one round). My haematologist came and spoke with me during it and said that he discussed my case with colleagues and a radiologist in Dublin, and they've decided that I will hopefully only need 4 chemo sessions (8 actual treatments -woooo!), and then some radiation (boooo!). Not sure how many radiotherapy sessions yet -the radiologist will tell me more when I meet with her after the 4 rounds of chemo.

He pointed out that they usually do the radiation for Hodgkin's lymphoma in combination with chemotherapy, however when the cancer is in the chest, they are weary of using it on women, particularly young women -there's an increased risk of developing breast cancer in the future because of the radiation. But they weighed up the risks and have decided it's for the best anyway. Apparently my cancer is far enough up the chest area that they hope further cancer as a result of treatment won't be an issue. He's such a lovely and smiley doctor -he could tell me standing on my head was the best treatment, and I'd probably do it. So I trust him on this one.

So that's the current plan... I've learned from other blogs, forums and Facebook groups that 'the plan' can change, but for now, we're running with this one. Everything will depend on my PET scan of course, which should be

The adventures of Chemo Doll!

Another quickie just to show off the 'Chemo Doll' my friend Jeni knitted for me for Christmas. Wearing a lovely rainbow dress and purple hat, Chemo Doll is as bald as I'll probably end up, and accompanied me to my last session as my new mascot.

(Excuse the photo quality... and my creepy face -selfies are not a talent of mine)

...So now this wee one needs a name. Gerry (My friend, Jeni's boyfriend and general all-round rapscallion) suggested 'Chemo Sabe' (as in Kemo Sabe). Can you think of better?? Comment below!

Positive vibes, man!

I'm really fed up of the word 'positive' at this stage -not what it means, just the actual word. I wish there was another word for it. I've used it so much since being diagnosed with cancer, and have heard it so much too. Truth is, I didn't realise how much of a 'positive' person I was before now. Not only in coping with having Hodgkin lymphoma but also at the rather annoying 'looking on the bright side' crap I've been doing with every situation involved in such a diagnosis.

Example A. -Loosing my hair. I've read in blogs and Facebook groups other people's stories, particularly women, and how it's been one of the hardest side effects to come to terms with. Even though I haven't lost mine yet, I can't help but look at new hats I'm going to buy and hope that my hair grows back curly -having curly hair would be nice (for those who don't know, after chemo your hair can grow back different colours and textures!). Example B. -Fatigue, and how from my point of view, being able to fall asleep easily will be a welcomed change. I've had some fatigue but not the last few days -I'm soo hyper and full of energy for some reason. Although I read this can be normal in the beginning.... and there's a host of other

Mom hair

So I've heard and read several times that cutting my hair short may make it less likely to fall out during chemo, as it will be lighter... so here goes everything! Result? I now have 'mom hair', yet somehow look younger. For those who know me you will know how young I already looked. At 28 I get ID'd regularly.

I also changed the colour slightly to try and mimic my natural hair (from what I remember of it, it's been that long) as I won't be able to colour it in the near future, and I've bought baby shampoo and conditioners. Not just any baby shampoo (as some are only kind to your eyes) but one that has absolutely no bad stuff in it -I went for the Elave ones, got them in Boots. I can't blow-dry my hair or use heat stylers, but when it's this short anyway, who needs em? Meeeeh :/

Things I also look like: A 90's TV detective woman or a TV reporter... or similar 90's things. I cut it myself and I really only know the one haircut -90's layered feathering. Jennifer Aniston eat your heart out! ...except not really 'cause she had nice hair. For those who don't know me, here's a pic of my hair before I changed it:

I'm the third from the right. My lovely Simon there in the middle in the grey hoodie. This pic was taken just after I was diagnosed and met up with some of my lovely and wonderfully weird friends :)

I'm getting used to it though, and all jokes aside, don't really mind the short hair. I'm not even upset thinking about loosing it, to be honest...

Don't get me wrong, I will make one ugly bald person, LOL! But sure it'll grow back, and no matter what shite you're going through -things can ALWAYS be worse!

The week I was diagnosed with cancer

On Monday December 2nd, 2013 I went for an appointment to the hospital -My neck was hard and tender but sure what else is new! The surgeon fella had a wee feel and his intern joined in, talking in medical terms I didn't understand. All of a sudden he said I needed to be admitted to the hospital for tests and that he knew I wasn't expecting this but it would be for the best. Bit shocked but kinda thought, 'oh that's good'... for those reading who aren't from Ireland, out-patients appointments can take a long time for such things, and this really isn't the norm. The seriousness and urgency in his voice however then made me think: 'oh bollox'. He told me my lymph nodes were inflamed. Now the only thing I know about the lymph nodes is that they can swell if you are sick from an infection... I had been absolutely fine; no temperature, not even a sniffley nose.

They kept asking me though -from the Monday to Friday that I stayed in the hospital, every nurse, doctor, intern and member of 'my team' (I loved that term, I had a 'team'. No matter what crap was going on I amused myself with the fact I was some sort leader of a gang. Probably not a street fighting gang, maybe like a dance gang, and we'd 'dance out' of every bad situation we found ourselves in) asked did I feel sick. They also took bloods each day. I have very crap veins so this was a nuisance. They said they hoped to do an emergency CT and then a biopsy if needed.

On Wednesday this all happened in a rush, had my CT and as soon as