Ireland calling

I've sat to write something for the longest time, do you ever get, even though you have so much to say, you dont know where to start?or to how get it actually out?
I guess I should start with introductions, I'm Lyndsey and I joined this club we're in almost 9 weeks ago, well, actually my story starts a few weeks before that, I should start there right? I had just finished grad school, had a job, that even though I knew it wasnt what I wanted to do forever, i loved, I was just a normal 25 year old (by normal i mean not sick!) This past year had been a crazy busy year, grad school and working, both full time. I was letting myself have a 'cool down' period while i figured out what i wanted to do,what my next step was, until all that was taking out of my hands.
i remember the day as if it happened yesterday, I work in a childrens hospice, as winter was coming in so was the flu injection. It wasnt mandatory but I got it anyway. I remember being so pissed off the doctor was late,we were having a busy morning & I had things to do!I got it done and that was that, I thought nothing of it.Over the next few days I felt really crappy for want of a better word, I couldnt shake it off. By the weekend I felt so awful, I had the worst headache I have ever had in my life, nothing I could do when make it go away and by the sunday night I couldnt hold anything down. By mom came to my apartment, one look at me she literally had to drag me to the doctors, As soon as he saw me he said he thought I had meningitis and sent me straight to the hospital. Brain scans, lumbar punctures ensued and the diagnoses came,i had viral meningitis. During the abundance of tests I had that day, the admitting doctor ordered a chest xray, to this day, no one can figure out why he did that as its not routine for a patient with suspected meningitis. Little did I know, it would be that xray that would literally save my life. I had to stay in hospital for 5 days getting anti viral medicine, i got discharged on the Friday and was so looking forward to no more hospitals, recovering and getting back to normal. That monday the doctor from the emergency room called and told me there was an 'abnormality' with that chest xray, it was nothing to worry about. and as a precaution I needed a scan, 'just to double check everything is ok'. The day of the scan came, I really thought nothing of it.That night I was getting ready to head out for dinner and i had a a voice mail to call my doctor back on his personal cell phone number.I have replayed that call over in my head,and the only thing I can really remember....'I need you to come back in tomorrow morning...and you should bring someone with you'.It doesnt take a genius to work out that isnt good. That next morning he danced around what it could be, I asked what worst case scenario was, and he did mention the dreaded C word-if any, one of the blood, but in his opinion because my blood work had been ok he didnt thing thats what it would be, a biopsy would decide what this exactly was.
The day of the biopsy came.The procedure was suppose to take 30 minutes-it ended up taking 3 hours.Before the procedure started the doctor told me there would be a pathologist there to make sure he got a 'good enough sample' for testing, it was normal, just part of the process. Half way through he stopped and demanded the consultant pathologist- and thats when I knew. It would be 24 hours before I would have a definite answer. I remember being so mad,only suppose to have to stay in the hospital 1 night, I was heading into the 2nd one before I saw a doctor again. It was the usual small talk doctors make when they try not to give anything away, blah blah we're looking at a few things, theres a haemotology conference tomorrow and we'll know more, we'll get blood work and you can go home today, do you have questions? So I asked him-do I have lymphoma? I will never forget how he looked at me, I knew he didnt know what to say. He quickly changed the subject to what I did at school and was on his way, he came back 10 minutes later to apologize for not answering me, apparently doctors like dont being straight with patients and i floored him with the bluntness of my question, but because of my back round, he was going to be straight with me-lymphoma was a possibility, he was going to talk to the haemotologist and we would know more. 30 minutes later, sitting on my bed, in a 6 beddded ward, curtains opened, eating my yogurt, reading some trashy magazine, listening to music when in wondered a new face, a new face I would come to know as my oncologist, and came out with it- Hodgkin Lymphoma-quite big tumour- and what was my 1st reaction- to say thank you... really lynds, this dude has just changed your world forever and you say thank you?Chemo, radiation, fertility, spread, tests, scans, all talked about, academic Lyndsey came, she took over, asking all the right questions. But in that moment, for the 1st time, I wished all my education away. I knew what all this meant , I knew the statistics & knew what was coming my way, and even now a huge part of my wish i didnt. All the testing followed. I went into autopilot, out came the huge smile and this calmness, those first few days is was like i was being strong for everyone else who was falling apart, I couldnt possibly fall apart, i had to strong and ok, when, looking back, maybe I should have. Thank god, it hadnt spread, it was contained, just the 1 big tumour in the middle of my chest and once that was confirmed, treatment could begin.
As it currently stands chemo consists of 4 cycles/8 sessions of ABVD, that could be extended depending on the results of the half way PET scan. I knew it wasnt going to be the most pleasant experience, but omg, i never ever expected it to be this bad. I had my first session on December 30th-I actually kidded myself to think that I would be fine and could go out on new years eve!The sickness literally started straight away- that same night after the first session & very session since then has been even more brutal than the one before. After the second one, I was that sick I had to go back into hospital to go on IVs-on that visit, my team couldnt get access to my PICC line so needed to put in another line, took a reaction to the IV drugs. Just as I got over that, the next week I had a DVT/blood clot in my PICC so that had to come out, a new one put in and now I'm on blood thinning treatment for up to 6 months to make sure it doesnt happen again (this treatment, daily self injections that hurt like hell!). Number 3 was on Monday, however bad I thought the first 2 was, it was nothing compared to how bad the past week has been. Chemo hadnt even finished when the oh so lovely vomiting started and didnt go away for days. Regardless of what anti sickness drugs I took-they came straight back up, I could even hold down water. Every fibre of my being was in pain and it wouldnt go away and for the first time I completely shut down. I wanted to give up, I didnt want to fight, I didnt want to have to be strong. i didnt want to have to do it anymore, i didnt want to go back into hospital, i didnt want anyone near me or telling me it would be ok-how the hell does anyone know that? How can they tell me it will be ok when they have no idea how horrendous this is? I think i was almost delirious. And then I felt both guilty and selfish for feeling like that because even how horrible this is right now, I'm lucky, I can fight, some people dont have that luxury. But god, its so damn hard, and its not even half way yet-how bad is this going to get?Everytime I find a middle ground of being ok, something just comes to kick me down again, everytime that happens, its like i'm falling deeper and its harder to get back up again. I know I will get through it, but i'm losing the strength and the fight, with every treatment i'm so scared, every chemo, i get sicker, its so frustrating, my team keep telling me I shouldnt be this sick so soon-how sick will i be?how much pain do i have to endure?I feel when your giving the 'big c' card you should be told how truely awful it is-literally hell, but no tells you that!
​When I was first diagnosed, I knew there was no way I was watching my hair just fall out, after my first chemo, I got it shaved and donated it to a childrens charity, but the little bit I had left has started to come out this past week-its so gut wrenching watching that, even though its only a little amount. I find it bizzare that one of the hardest things-i think anyway for us girls is the hair thing. I'm such a girlie girl and losing it was like losing part of my femininity, its so hard to look in a mirror, crazy right?
But perhaps one of the hardest thing of them all, and probably how I found myself here really, in Ireland, there is so much support for all types of cancers and lots of charities. But since I have found myself on this journey, this is what i have learnt- yes there is a lot of support of all types of cancer; all the main types that is, there isnt a single lymphoma support group, let alone one for hodgkins (its rare here-only around 100 cases a year). And all these charities and support groups- either for children or older adults,there isnt a single charity specifically for young adults. Even on my haemotology unit where I get treatment, not only am I one of there youngest patients, I'm one of there youngest patients by at least 35-40 years. One time I has having chemo, a lady kept saying how sad it was that I was so young-hello we're all here for the same reason!!While I think anytime of support and connecting with anyone who knows what your going through is brilliant, its so hard for to relate to someone whos more that double your age. In this whole country I have found a whole one person with Hodgkins-well shes in remission a few months, and while she was fighting she could find no one. She has literally been my savior. There is no real outlet and its hard and scary.

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