Health (and life) updates - October 2018

Just some housekeeping and catching up! I've been super busy with various projects the last while. To read my last health update, click here. I've exciting news tomorrow, but all this malarkey first.

Physio, bracing and the never ending saga of the hips 

I continued with my local physio briefly, but we have naturally reached the end of the road. Although I know she is available any time I need to contact her for advice.

I was yet again denied surgery for my hip -this time by a consultant in Beaumont. On arrival neither the locum nor the consultant had heard of Ehlers-Danlos syndrome, but of course, as always, ten minutes later (after I told them what it was), they were experts. Spouted off rubbish about how the surgeries to help preserve my hip may make me worse, due to my EDS, in that more than likely/ in most cases the surgeries are unsuccessful. No stats, no real information. This contradicts what I know from other EDS/ hip dysplasia patients who are living their life to a much higher level of mobility (hip wise, at least) than they were before. While this is all anecdotal, clearly, at least I had anecdotes. These doctors had no information. There are indeed some issues with EDS patients having surgeries -for one, we take longer to heal. Major surgeries need to take certain criteria into consideration (for say, the likes of surgery for Chairi Malformation). These were not the issues they brought up however, in fact they just rambled.

On entering the orthopaedic clinic I first met with the locom who discussed my X-ray and noted how I didn't yet have arthritis. Those of you with similar conditions will know how consultants and doctors alike hate using the word "arthritis". They think it will send patients into uncontrollable hysterics, that we will demand action. Especially women. We will become so hysterical our vaginas will fall off and we will wither and die with the shock *clutches my pearls*. At my age, with untreated hip dysplasia, I would be extremely lucky to not have some arthritis. I'm often told I have "damage", indeed apparently I have more "damage" on the healthy hip rather than the dysplastic one. Either way it's a non issue -I have much more pressing issues that the natural occurrence of arthritis! Plus I am on painkillers and medications that may be used to treat arthritis anyway, so a sub diagnoses of such I pretty irrelevant.

So the consultant enters, babbles on about why I can't have the surgeries to save my hip -We would make you worse, they aren't good surgeries, your EDS, your EDS, your EDS... When they realised both their lack of knowledge of EDS and even recalling the names of the hip surgeries were showing, the consultant decided to play another hand. "You have arthritis so can't have surgery". Wow, what a game changer, after twenty minutes of trying to work one angle lets just go with this instead. My eyes darted to the locom as I spoke, "Oh really, it's just I've been told I don't have arthritis". "Yes, you have arthritis" the consultant repeated, proud as punch with his decision to whip out the A word as it suited him. This isn't my first surgery rodeo, so while I understand that yes, bad arthritis makes a joint unsuitable for surgery, that simply is not the case here. I have quite mild arthritis/ "damage" I gather from previous X-rays, and my healthy hip is greater effected than the hip that actually needs surgery. Certainly not enough to impede any needed surgery.

Health update - Upright MRI 2018

Hi everyone, thanks for stopping by! Here goes with all the boring health updates. Starting firstly with the obvious, the important London stuff including upright MRI.

At the start of the month myself and Bicky set off for London for the upright MRI and to meet with an experienced physiotherapist there. We booked three nights in the hotel, knowing that travel is very difficult, tiring and painful. And from what I had heard the upright MRI is no picnic (plenty of rest needed afterwards -not travel). Flexing the neck triggers the symptoms we are there to investigate in the first place.

I spasmed, jerked and gagged during the long and slow scans. But all in all I did pretty well and was quite proud of myself. It wasn’t pleasant, to say the least, but the staff were lovely and understanding. Afterwards I vomited, the gag reflex was just too much, but that was after the fact so I’m not counting that, haha.

Physio

The next morning I met with the physio, and what an experience! I don’t think I’ve ever had such a comprehensive and educational appointment. I learned so many interesting things about how my body works. The lovely physio didn’t have my MRI results, which the consultant had hoped she would by then. But by simply feeling my spine and areas of my body, she was able to tell me a lot about what was happening under my skin.

Spine

Feeling along my spine as I moved my head to the sides, backwards and forwards, she was able to tell me that only part of my cervical spine was assisting in this movement -unlike with the average person, who moves parts of both their C spine and their thoracic spine. My T spine is locked and will not move on its own, causing pain to the overworked C spine. She pointed out that our bodies are quite amazing, in that if they can’t do something in the normal way, they will endeavor to find a way – even if that way is injuring us -“Your body will find a way to make that movement if it can”. So interesting. 

Image by Freepik

This explains one of my longest running symptoms and major causes of pain. As a child I called it “spine freeze” but this is NOT a medical term, merely a childish way of trying to explain to doctors what was happening to my body. On lying down my spine would seize entirely, although more so focused at neck and mid back areas. I could barely move, and any tiny movement felt like my spine was about to snap. It was like one, long unflexing pole. It was both terrifying and agonising in equal amounts when I was a child. I still experience this phenomenon but only a few times a month.  Sometimes I feel what I call twitches when standing/ sitting, but I can unlock these. Unlike when I’m lying down and I just have to wait it out. While still scary, the lesser frequency has helped, as does age -I suppose I got somewhat used to it.

Friends corner: Ehlers-Danlos Q&A {part 2}

Following on from part one of friends corner: Ehlers-Danlos Q&A, here's part two with some more friends. Enjoy!

Sarah

2005                                                                                             2006

2013

2009

2014

2015

2017

I became friends with Sarah around 2003 as we were part of a wider group of friends (scup the dirty AOH grungers, haha) and we later lived together.

I inherited the semi-famous Tubby cat (AKA Tubbz) from her, spent Christmases together (AKA St. Spickets), became godmother to her beautiful son Cian, and later devastated by his untimely passing. We've also been through many a carton of wine, mountains of white tights, bottles of Bucky, buckets of bobble hats and a million different hair colours between us!

Q. How do your illnesses effect pregnancy and child birth?

Friends corner: Ehlers-Danlos Q&A {part 1}

I thought it would be rather nifty to include some of my pals in a blog post, while also helping to spread awareness of Ehlers-Danlos syndrome.

Through the years I've been diagnosed with several health issues, including cancer, and so I know as things haven't been as linear as they probably should be (my diagnoses journey has actually been really and truly all over the place), that perhaps things can get mixed up. I explain symptoms and issues  of course, but my conditions (especially EDS) can seem so broad, vague and I'm sure confusing to loved ones.

As time has progressed I'm unfortunately unable to spend as much time with friends as I wish. I'm currently on house rest, as having issues with my C spine and unable to travel much (car journeys have always been painful, but recently they are excruciating). I have a couple of important trips over the next two months that I have to make, so the break is needed now in the hope that  I can indeed travel by then. And with general life getting in the way, it can be hard for friends to visit me. So I'm really excited about this segment.

I told some friends that they could ask me any question about EDS -particular to my case or just in general, something maybe they have always wanted to know or were afraid to ask, or just simply never had the opportunity to ask. No silly questions. Although silly questions are also welcomed -haha, funny is also good!

So here is post one of my friends corner: Ehlers-Danlos Q&A. These are some of the people who made me who I am... Please don't judge me too harshly based on them -I can't get out enough to make new ones 😛 And if any of my other mates out there would like to participate in part two, please contact me! E-mail: kittypotpie85@gmail.com or through my Facebook page:
Cripple Baby - Disability Blogger.

Gabriel 

2009

2010

2015

Gabe is one of Bicky's (my partner) oldest friends, although I actually met him shortly before I met Bicky. I think around 2008/ 2009.

Over the years we've bonded over our passion for garlic bread memes, love of Buckfast (you will notice that crops up as a mutual bond for most of my friends) and our shared inner spirit similar to that of a grumpy, old farm cat.

Stick'er i-tin debiscuit-tin

Q. What was the most inconvenient time that a joint has dislocated?

The road to Cork

As regular readers will know, I was diagnosed with joint hypermobility a while back (although this was nothing new to myself) and very possibly have dyspraxia (they seem quite commonly linked). However, I find myself in the predicament of being too unwell for physio and occupational therapy, and can't get any doctor to take me on or even advise me in my current state. Low muscle tone, no stable core, lack of balance and frequent subluxations... All becoming worse over time, as I continue to not acquire any medical help. But everyone in my GP office have been truly great, all willing to learn and research and try me on different medications. If it hadn't been for one doctor there stepping out of her comfort zone and putting me on Baclofen a few months back, I honestly have no idea what state my body would be in now. I'm far from being healthy but I'm a long way from where I was before I began taking Baclofen. It's one of the many reasons why I feel so strongly against both medication shaming and anti-science baloney (as well as pseudo-science). The wonders of medical science and the amazing things we have achieved as the human race leaves me in awe and amazement on a regular basis, so I loath any click bait scams that threaten our gullible society back into caves. 

...Well it wouldn't be a blog post if I didn't go even slightly off topic, haha. Right, so where was I...

So a bit about joint hypermobility: 

Having hyper mobile joints literally just means that your joints over stretch the usual range. If this is accompanied by pain it is often referred to as joint hypermobility syndrome. The joints over stretch, and as we looked at, can cause frequent subluxations or even full dislocations. This leaves me and many sufferers in constant pain. I find my subluxations were causing my muscles to react in intense muscle spams, which increase my pain (as well as make me look like a big, flailing fish on dry land), hence the need for Baclofen.

Many people are hypermobile/ double jointed, but they may not have any pain. So, if someone like me encounters a doctor who is not knowledgeable on such conditions as EDS, they may confuse the two.

The terms hypermobility syndrome and Ehlers-Danlos (type 3) are interchangeable, but really are the same thing. Some doctors simply prefer one from the other, and of course, using the term "joint hypermobility" spells the issue out in a more obvious way. To define hypermobility, doctors often use the Beighton scale in evaluating patients. If you Google images associated with EDS, you will find the extreme versions of the condition -please note that in order to be considered hypermobile, you don't have to have all of these signs, and you may not stretch as exactly in these photos. For instance, I can pull my thumb closer to my arm than most other people can, but not all the way to my arm as in the picture below:

In this example, I stretch enough to be considered hypermobile, even if not all the way. Other joints do over stretch to the full extent, and I'll talk a bit more about my personal case below -I just think it's important to note that you may not be as extreme as you will see in photos of the condition. While hypermobility is common in children, we all lose some of our elasticity as we get older -and those with hypermobile joints can be the same. In my own case, my body can stiffen and become very tense, due to the muscle issues. Being so tense and rigid goes against my body's usual hypermobility, and so it can make it hard to spot in older patients. Many specialists now use the Brighton scale, as they see a strict Beighton as outdated.

The cause of EDS lies within a fault in our collagen, the most abundant protein in the body that helps hold everything together (present in skin, joints, blood vessels -which is why symptoms can be so vast and hard to link). 

Because of this, the condition is more than just hypermobile joints and pain. A specialist will diagnose it on several criteria, including examining the patient and asking about medical history/ family medical history. Someone with EDS hypermobility type may have (although may not have all) some of theses symptoms:

The bad, the really bad, and the never ending

Physical pain is hard to talk about, almost as much as it is to live with.

I have had a horrible week. In general, I've had a very bad few months, but this week has been the worst -Although maybe I say that every week. I don't even know anymore.

The Baclofen I taken to control severe muscle spasms and tightness (which are usually quite good) are barely doing anything now.... It's a really strange sensation to explain. My body is like stone. Like something is grasping by whole body and squeezing.

A sharp, knife shoots through my shoulder blade. It cracks, pops, crunches. My neck twists. The only relief is by bending and pulling the shoulder, into place it seems. It's excruciating, but eventually after all the pulling and popping, it becomes numb. For a while.

It often travels from the shoulder, pouring down the arm. Becoming prominent around the joints -elbow, wrist and sometimes even fingers. My fingers have become deformed in the right hand the last few years, and I have no idea why. All I know is pain.

The hip pain is never really hip pain. It's hip pain, buttocks pain, lower back pain, thigh pain and knee pain. On days when I "over do it" it pops, then burns and swells. All these things are normal with hip pain, particularly the buttocks and the knee referral.

My flat feet cramp. My toes turn up in an effort to stabilise my body and not fall over. My legs are numb and unusable, for the most part.

I sleep all the time, yet I never

To Dublin hospitals, with love... Etc.

As many regular readers will know, I have not received correct medical care (for any of my ailments really, which are mostly linked somehow, but first and foremost for the hip condition present at birth) because...

A.) Where I live the local hospital is basically closed (no A&E, they borrow equipment and staff from other hospitals, etc.) and the other "local" hospital is incredibly understaffed, underfunded and under-equipped in general (It is the main and only hospital for a very large populous, also).

B.) I was born in 1980's Ireland -That's like 1950 everywhere else, in relation to medical care (and of course in relation to other social issues: such as owning a vagina, enjoying the relations of someone of your own gender, etc., etc., ETC.!)

C.) I do not "scream loud enough"/ I have been incredibly unlucky (referrals going hay-wire, doctors not admitting fault at my birth, etc.) / I avoided doctors for a huge proportion of my adult life/ and a combo of the usual Irish "sure it'll be grand" inside of me that prevents the "screaming loud enough".

And you may also remember that I've recently sent off my referral forms to Cappagh for the much needed hip surgery that I should have probably started years ago, after advice from a lovely, fellow Irish "hippy" that I met online... Well, it turns out,

Gym stuff

As regular likers of my new Facebook page will know, I have recently tried my hand at going back to the gym. This is something I used to do on a regular enough basis -Whilst I could not run outside, I could somewhat run on the treadmill. Running being one of the basic activities I miss doing... Along with general sport and activities which of course, require running. But alas these days, I simply miss walking!

I began my (what became a long) break from the gym gradually. I had to stop when I commenced chemotherapy, as gyms are apparently one of the most germ filled places ever and I had little to no immune system. I did go back briefly after I finished my treatment, but as you all know, my body has declined even further the last year, and with that, my ability to exercise...

I was never a "gym bunny". Lets be clear on that! Haha.. I went once a week, sometimes once every two weeks -TOPS. And the odd walk with my dear friend Christina, coupled with leisurely walks with the dogs. Even these things were struggles, but doable. At one point in my life.

But I really do miss the gym. I love exercising and the rush I get from it... I don't enjoy the pain, of course. How and ever, people need exercise to live and to thrive. And so I recently started going again. I went twice and then joined fully, so hopefully I can keep going once a week to begin with and maybe twice in the future... I just have to remind myself that my "over doing it" is different than other peoples over doing it. And if I forget, I always have the crippling pain to remind me.

____________________________________________________

A couple of FAQ's:

1. What about swimming? I hear that's great as a low impact sport?
It is. But unfortunately, I cannot swim. I have tried several times and

The longest hour

Recently I have been researching ways to go about getting the much needed hip surgery that I require. I will inevitably need a complete replacement, there is no way around that, although there are also surgeries I can have which could save the hip for a little bit longer. If I lived in the UK, or anywhere but Ireland, I would have began this treatment as a child. I wouldn't be on an ortho waiting list for years, given bad physio which made my condition worse, and basically told that I need to shut up and put up, I am "meant to be in pain", and good luck trying to get those surgeries in Ireland... a little more on that ---> here, as not to repeat myself.

Me and Bicky had recently decided enough was enough. we would somehow save and go to the UK and just get the new hip that my body needs. I'm nearly 31 and

My elephant in the room -The wheelchair conundrum

I've mentioned several times before in past posts how embarrassing it can be, stuck in between the two worlds of the enabled people and the disabled people. Sure, not everyone ya meet out there is dumb-as-fuck/ is aware that disabilities differ -Some extremely visible, some hidden. But I can't stress enough, this world view is not as common knowledge as you may think.

For some it's either able bodied/ 100% fit and healthy Vs. little Sally has no limbs and is blind and deaf, lets stick her on a Facebook post with some inspirational words and say Oprah said it (Oprah didn't say it? That's ok, it's the internet, no one will check) so we can all feel better about the situation. Maybe even type AMEN, then we're all defo going to heaven. For some, it is indeed that black and white.

Example -the recent news stories of people getting shit for either stepping out of their wheelchair for a minute, ('cause ya know, never ever in the history of people has anyone eeeeever had to only use the chair on a part-time basis) or not owning a chair to begin with, and notes left on their cars calling them fakers -even though they have disability badges (because things like Crohn's disease or other internal diseases do not exist either). See some examples here:


EastEnders star Lisa Hammond abused in the street

Coronation street star Cherylee Houstan falsely accused of being a benefits cheat

Mum of disabled toddler returns to car to find threatening note

Woman suffering from fibro finds cruel note branding her "fat and ugly" after she parks in the disabled bay (although this one should really get a badge if she guna be at that!)


For people like this, it's a simple case of if you weren't in a wheelchair at birth, why would you be now? They don't view conditions as progressive. If yo momma didn't pump out the wheelchair from her vajayjay straight after you plopped out, then you're a faker. Because wheelchairs are super fucking kewl and everyone wants them. For others, it's the very common, over-stated "you're too young to be sick" mantra.

These prejudices and extreme/ bizarre/ old fashioned misconceptions exist even without the visible elephant in the room that is the wheelchair. A cane doesn't really

"I'm not qualified for this" -A tale of a fragmented and centralised health system

Chapter 1.

The Clicky Hip That The Doctor Missed 

Once upon a time, there was a girl, and this girl lived in a land of infrequent and inconsistent health care. As the girl grew, she slipped through the gaps -Being told treatment was too late, there were other issues at play, she was "wonky" and they weren't qualified to help... Just beyond this place, in various reaches of the further land, many children with similar issues, and many adults too, were receiving regular health care. Surgeries, rehab facilities and specialists galore. They lived quite a different life because of this... It was only at the age of 30 that the girl finally realised the truth. The truth being: National healthcare was a lie; her circumstances had resulted from her address.

I have always had hip dysplasia. Always. Doctors may have thought I was a dumb child, so referred to it as being "wonky", or being "slanted". Many hear of it and comment "Oh yeah, clicky hip I think it used to be called?" and generally follow that up with how it's no big deal, loads of babies get it... etc., etc., and this can be the case. When found at birth or shortly after, a harness is usually fitted. Annoying for the parents and child, but extremely vital for the child's correct growth. The issue is that the hip, usually either in the womb or at some stage during the birth, comes loose of it's socket. Generally treatment begins straight away -with a harness, regular check ups and x-rays and possibly surgery starting around 2 years of age, sometimes before, depending on the patient. Some don't need any surgery or just one surgery, others need several surgeries, throughout their life spam. These surgeries are to help the hip be more stable, to save the hip from replacement for as long as possible. This can include strengthening the joint and deepening the socket so the hip will sit better in place. Now, without this treatment -as in my case (as the doctors refused to even look at me until I was older and walking funny/ limping)- the body creates

The March into summer

It's the end of March. Not long until summer now, not long until the end of college, not long until little Kitty rests her weary bones (and muscles, and nervous system, har!).

Summer will see me take the time out I need to concentrate on health, maybe push for surgery, and see where I can go from there...

Marching on; one paw in front of the other!

...The solar eclipse of 2015 was an amazing experience for me. I remember the one that occurred when I was younger -I still have the newspaper clippings. Wish I had better photos, but it's the experience

8 things you should know if your friend suffers from a chronic illness

There's loads of these types of lists to be found on the internet today, but thought I'd write my own -What I believe are 8 important notes to remember if you have a friend or family member suffering with a chronic illness -These vastly range from MS to Crohn's and everything in between (literally too many to mention. Both visible and 'invisible' illnesses)...


1. Not being a doctor is ok. Not being able to pronounce the condition your friend has is also ok. Not knowing anything about it, is not ok. 
Your friend or family member won't expect you to write a thesis on the subject, and you probably stumble over the letters trying to pronounce their illness and any medications they take for it. But if you are constantly asking what the issue is, and can't use Google, then just don't speak at all. Even those who are open and honest about their illness will get fed up hearing themselves say the same things -Ask once, ask new questions, and for the love of your friend's sanity, use Google.

Some won't want to discuss it -they may find it upsetting, they may partly be in denial. In this instance -Google, Google, Google! They might change their mind in the future so take an interest. Please use reputable sites though such as the Mayo Clinic.

It might be a big part of your friends life and who they are as a person. If you

Neurologist, round 2

So after a year and a half since my first appointment with the neurologist, I *finally* had my second! Hurr-bloody-aaayy! Nothing incredible to report, but as I'm meant to mostly be blogging about my diagnostic journey, then it's worth a mention...

She would like to monitor my BP for a few days to see how low it is. Not the all important, illusive tilt table test but it's probably the next best thing! So at least we are finally getting somewhere. She also wants to see MRI results of one I had on my C spine a few years back (I was given a CD, hopefully still have it somewhere). At the time they took images of my brain but didn't actually read them/ include them in their report. They were mostly concerned with the C spine and any damage done to the shoulder. It's just cautionary, rule out any nastier reasoning for being dizzy, clumsy and the general lack of coordination.

Here's a photo from that MRI that I do happen to have. I look dam sexy as a size 0.

Not sure yet when I'll

Happy (belated) birthday -Cripple, baby!

Oooh, cannot believe I forgot my own blog's birthday :P -Bad blog mama! On September 6th, my little project was 1 year old.

I began this as a journey through ill-health (Hip dysplasia, nerve... shite, spastic... something or other, GERD, hiatus hernia and Dysaut... dizzy-tomnia... or something something) and diagnosis... And soooo, have had feck all appointments or updates as of yet! (Cheers, Irish health system)... But instead, I've entertained you with my bleak views, boring fur-babies and many, many sarcasmos (It's a word now. Because I said so. Also, why is anyone still reading? I'm bored already, and it's my blog. "GET OFF MY BLOG" -In a Peggy Mitchell voice. Sorry if you aren't in Ireland or UK and don't get the reference), and of course not to mention my cancer diagnosis, treatment and recovery (Cheers, Irish health system -this time without intended sarcasmos).

Bless... They're just adorable at this age...

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.

100 days of happiness... Day 4 & day 5: Doggies & juicing

And so here's the happiness posts for Monday and today... This experiment is harder than I thought! Either that, or I'm a narky bitch! ...If so, doing this may be the cure for that...

Monday 26th May:

Doggies

When in doubt what to be happy over, animals are a good choice. On this day, my sleepy little fur-babies (aka dogs) were the things to make me happy. 

Emily

Louis (Lou-Lou bear) and Simon (Bicky)

Tuesday 27th May:

Juicing

I've had a really bad day with hip pain -sore to lie down, sore to sit up, sore to stand and near impossible to walk. So it's been hard as feck to find something to be happy about. I would usually say 'bed' in this circumstance (har) -Although as I said, cannot get comfy lying down... so bed, you can kiss my ass ya shithead...

As yas all probably know by now, I adore my juicer. Bicky too. It's a deadly way to get in the extra vitamins when ya just can't eat any more. After researching it a bit, we've decided to do a total juice "detox" (for lack of a better word, I'll use the dumb, unscientific terminology) -that is, eat nothing, just get all our nutrients from vegetable and fruit juice.

It's a great way for obese people to lose weight, while resetting their taste buds -from what I've seen and read, after about a month of doing it, when the participants go back to eating, they actually crave vegetables and fruit -rather than their usual chips and cheese burger (chips=fries, for my US readers). This can only be a good thing. This is kind of what happened to me when I was 13 and half-ish and decided to stop eating meat -I eventually went from being afraid of certain foods, to loving them. The more you consume something, the more you actually do like it. That was my main reason for turning to a mostly vegetarian lifestyle -I had extreme food issues (like many people -nothing on the plate could

PICCture this

My PICC line

Yes, yes I know –I have been absolutely AWFUL at updating this blog, yet again! I hereby vow to post at least once a week!

So just to keep yous all updated on the whole cancer thing… last time I posted, I was getting my PICC line inserted –I had managed to calm myself down, from talking to people on-line, who explained how simple and quick the whole thing is. Here’s how that ‘minor procedure’ went down…

Me and Simon arrived at the hospital for my 9am appointment. After a small wait, I was brought in and the nurses explained the procedure to me. I was feeling ok, considering –a hella lot better than I had been the day before anyways. The nurses were lovely too, which really helped. I lay down and decided to face the other way as the line was being inserted. The whole thing was pretty gross, but not too painful –I think it’s more knowing that a little line is being inserted into your arm up to your chest. After a few minutes it was in, and I was told to go downstairs for an x-ray –make sure the line was in correctly.

Afterwards, I came back upstairs only to be told the line needed to be adjusted. Not a huge deal –The nurses explained this happened sometimes. So again, I went in to the room with the nurses and again, downstairs to x-ray, and again back upstairs to wait for the main nurse.

The second the nurse entered the room, I knew by her face I needed another

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

White hipsters can't jump... or run

So I'm getting more into/ back into this walking malarkey -got my insoles in, got my dogs by my side... and Simon, in case I fall over. He's good like that! Only had time for a 45 minute walk today unfortunately, but at the same time I guess it should be wee steps. The dogs were happy anyway -10 minutes is a huge walk for them sure, never mind 45 minutes. Their wee, silly tiny dog legs and all. They are flat-out snoozing right now, bless 'em.

I'm trying to use this time of steroid-fuelled, not-so-bad-chemo-effects, body-hasn't-copped-on-it's-doing-things-it-couldn't-before phase to get myself into gear and hopefully build up a bit of muscle. Or at least an attempt at running (which doesn't end up with me flat on my face as per usual). So tomorrow I'll be taking my new insoles out for their first test drive in running!
...Or, rather more likely, jogging!
...for like half a minute at a time maybe. But it's a start!
...Or I won't be able to actually do it, and it's the end.
...Whatev's, the gym treadmill lets me hold onto it as I walk quickly. It's nearly like running/ jogging.

On a completely unrelated note:
Happy birthday to my mate Sarah!!! -I'm SCREAMING at you in annoying text and background colours! It's like a 1998 website all up on here!!!! Can't wait for Friday, hot stuffs!!!