Words, words, words.

…That’s all they are: words. Nothing more. Nothing less. Words. Words spoken by an insensitive male. Words being said to me. Words that would not stop. “Part-timer”, “part-timer”, “part-timer”. Three “part-timers” too many. Actually, I don’t know how many times he referred to me as being a “part-timer” but after the first time it was one time too many. Even after telling the orator of these words that “there is stuff going on in my life that you don’t have a clue about” he proceeded to laugh at me whilst blabbing on about him working seven days a week and that I’m a “part-timer”. That damn phrase again. “Part-timer”. He carried on comparing my being a “part-timer” to his life. “Part-timer”. There it is again.

I’m weak. I let the dumbass’ words affect me. I let those words make me cry. I let those words infuriate me.

I am angry. I am upset. Four hours on and I still think I could cry some more over the matter.

I went home from work early. The opportunity was there and I took it. I took it because I’m working every evening but one next week and because I’m only allowed to average a certain number of hours per week. I took it because I saw a safety net. I took it because no one else exactly jumped at the chance.

Yeah, I’m a “part-timer”. For a reason. That reason could be any number of reasons: maybe I might have a child; maybe I might be a carer; maybe I might be loaded rich and just have work-ethic…

We all know it’s none of those reasons. It’s my business though, not his.

The truth is complicated. The truth is I don’t have a tattoo on my forehead telling the world about my life. The truth is I try not to go into something complaining about stuff going on in my life. The truth is that my past is my own business. The truth is I only share my past when I am ready. The truth is that I am not accountable to anyone except to myself, my grandparents, my boss and my doctors.

It’s not just tonight though. It’s frequent. I hear “part-timer” by this guy a lot. Usually it doesn’t get to me but having my “part-timer” status compared to his seven-day week got to me. I should have just let it go over my head. I don’t know why but anger and emotion took hold tonight. Even though they are only words, they are words that hurt.

We all have our struggles. I get that. I understand that. I might not have my stuggles listed in neon lighting above my head with an arrow pointing down to me but I still have them. I didn’t ask for the situation I’ve been in. I didn’t plan for my life to turn out this way. This hell I’ve been through wasn’t a part of my “plan” for life. What’s happened has happened. What I continue to go through, at least there is a light at the end of the tunnel. Yes, I’ve come through this stronger, more mature and a little less niave about how invisible I am but I’m trying my hardest to make the best out of the hand I’ve been dealt.

Tonights words, however, make me question: is my best enough?

To my immediate family, to my closest friends – I’ve come so far. Studying part-time. Working part-time. To my consultant, I could be dead but I fought the odds. To some of the other people in my life: I’m just a lazy “part-timer”. I get that. I get that loud and clear.

Tomorrow’s a new day. I’m getting good at putting the crap behind me. These words? Hopefully by sunrise they’ll hurt less.

Patients vs. management

A few weeks ago I went to my physiotherapy appointment and was told that my next appointment would be my last. I learnt that physiotherapy, where I live, is capped to six sessions but my physiotherapist had been able to convnince her management to let me have nine. Before my physiotherapist and I parted ways on Wednesday I said, sarcastically: “I’m glad management go by patient needs”, to which she replied “management don’t know what patients are”. I’ve been thinking aout this over the past couple of days and she is right. Who am I to management? I’m just a hospital number. The reasons for my being there do not matter. The opinions of my physiotherapist as to whether I’m ready to be discharged or not are irrelevant. It does not matter about progress of treatment, it does not matter about patient response to treatment. All that matters is that I do not cost the physiotherapy department too much money. Being a patient I am not cost-effective. Even with the National Health Service, nothing is for nothing. It doesn’t feel as though the NHS is a patient-centred establishment, but rather a money-saving business – which I can support if it wasn’t so detrimental to the health of the patients.

I draw lines of comparison and I do not like what I see. A woman can have as many babies as she likes throughout her reproductive life and receive free ante-natal care. That’s not capped or limited. Drunks can appear in A&E with as many drink-related injuries as they wish throughout their entire life. That’s not capped or limited. Drug addicts can have babies which require specialised neo-natal care. That’s not capped or limited. Hypochondriacs take the time of the GPs. That’s not capped or limited.

Everything needs paying for and the money has to come from somewhere but when it is something I need I question who management are to make the decisions. Do they actually review the patient, or look at the statistics? Do they even have any medical knowledge or are they straight out of university with their business degree? Do they care why I’m there or are they balancing the books?

It’s not just a grievance about physiotherapy appointments being limited but it’s about some of the decisions which have been made, regarding my treatment, over the past six years. When the clinical facts were considered, I qualified for a specific drug (Exjade). When the paper chasers made the decision, I did not qualify because aplastic anaemia is not classified as a cancer – despite the treatment in parts being remarkable alike. My consultant could not prescribe the drug because no one would fund it. The bone marrow transplant centre shunned the responsibility. My local PCT would not pay. My GP is not authorised to prescribe it. Instead, three years on, I am still having almost weekly treatment to rectify a problem which could have been resolved sooner with the aid of that drug – or so the unanimous opinion goes.

What about the emotional support for those with a horrible disease? Counselling was capped to six sessions whilst my GP fought for me to have access to counselling services with a counsellor who really did not help because every session she reminded me that I really did not qualify for her services because I did not have cancer. Oh, that word again. No, but I still needed to understand what I had been through.

I am not cost-effective as a patient. I know that. I require penicillin, for life. I need an annual flu vaccine. I need haematology follow-up for life. I require regular blood tests. If I get sick I need to see my GP. I require consultations with other disciplines as a consequence of my diagnosis and treatment. One day I would like a child, or two, or three. I’m going to get old. I’m going to cost the paper-pushers more money.

So, management: why not save yourself a few quid and shoot me now?

Despite what I have written, I must not forget: the NHS saved my life. Even if I disagree with how the treatment went.

My piece in Bloodline

To those who have asked, this is what I wrote for the Aplastic Anaemia Trust’s newsletter:

I attended the 2012 Aplastic Anaemia Trust National Meeting for reasons both personal and educational. I am pleased to say that I came away having achieved what I hoped I would, and more. The most important feeling I left with was that of being less alone. By taking my Dad along too, he has learned more about the disease which took over my life and hearing N (the AA Clinical Nurse, funded by the AAT) talk about problems faced by patients, I feel reassured that my experiences were ‘normal’. I learnt a lot about aplastic anaemia in a setting where it was discussed generically rather than in a ‘personalised’ way, which was brilliant. After all, what very severe AA gas done to my life is not necessarily the same for everyone.

 

One of the issues discussed at the meeting concerned the isolation that patients feel when they are diagnosed. After the initial denial when it happened to me, I felt isolated and lonely. Despite making contacts via the AAT, they were so far away, and I felt this even more when I was unable to contact them due to being hospitalised. The hardest time was during my initial course of treatment when this disease was new to me and I didn’t know what the future held.

 

Whenever I describe AA to someone, I describe it as bone marrow failure. Personally, I feel that this trivialises the impact it has had on my life. N discussed “looking well versus feeling rubbish”; to the outside world, when I wasn’t in hospital, I was a face with a bit of eyeliner and a plastered on smile. What the world didn’t see were the bruises from a lack of platelets (which often hurt) and the tiredness from anaemia and whatever infection I was fighting at the time. I suppose, as with any disease, if the world doesn’t see someone at death’s door in a hospital bed, then they really aren’t seen to be suffering. 

 

The most important part of the meeting for me was the Q&A session with N. A question as asked regarding post bone marrow transplant fatigue. I learnt that a few people still feel tired. There are some days I just want to be in bed, sleeping, but I can’t always do this. The world goes on and so must I. The outside world sees me up and about, smiling, laughing, doing what I have to do but on the inside I am screaming to be alone and sleeping. Just learning that I am not alone in this has helped me considerably, because some medical professionals have dismissed my on-going fatigue.

 

The biggest thing I could relate to was when N spoke about never being free of a hospital. How right she is! If I’m not having a weekly venesection, I’m attending one clinic or another. It’s ironic that one of the most important substances I needed during my two years of treatment is what has caused my ferritin levels to soar; now I’ve had all the blood, they want it back. But this is a small price to pay when I weigh everything up.

 

The educational side of things was equally as interesting for me, as a student and a patient. Although Professor M and my Haematology consultant have educated me about aplastic anaemia, it’s only really been about what was going on with me. I’ve known from the beginning that it’s an autoimmune disease, but learning about the immune cells involved has helped me understand how this disease might have struck me. When I was diagnosed, I questioned what I had done to make this happen. Although I was told that it could have been something as simple as a virus, hearing about the immune cells involved reassures me, when I find myself wondering why a cruel force of nature has tortured me.

 

Professor M explained why patients post-BMT should take penicillin for life. For me it enforced the importance of medication compliance and it was the first time I learnt why taking penicillin is important. It reduces the chances of a severe bacterial infection, caused by an encapsulated bacteria, which can infect many years later. In the (almost) four years that I have been taking penicillin twice a day, every day, this was the first time I appreciated why I have to take it instead of thinking of it as a chore.

 

I’ve always considered AA as a kind of living hell, but after attending the National Meeting I’ve come away feeling comforted by the research which is being done (DNA-matched platelets, the causes of AA etc). All this will go on to help those who are unfortunate enough to be diagnosed in the future. I’ve learnt that the AAT isn’t only supporting patients but looking out for patients who are yet to be. My treatment has involved ATG (I had the horse serum in May 2007), two BMTs and infection after infection (a VERY brief outline). It’s been tough for me; I’ve wanted to give up but here I am now. Despite all this, there are positive impacts that AA has had upon my life. I’ve grown and matured as a person and if I had not been exposed to this disease then I wouldn’t have become interested in blood and I wouldn’t be studying Biomedical Sciences. Would I attend another National Meeting? Definitely! Not only did I feel comforted that I have never been alone, but I am interested in the current treatments, management and research

Four years on…

Today is four years since my bone marrow transplant. I’ve had a reflectful 24 hours with one thought or another, the biggest one is being very aware that there is a fine line between life and death and I continuously walked that line between 2007-09. I’m also aware that there are people I’ve met and known who did not ‘win’ against their ‘battle’, so last night I was feeling a little bit like a fraud – but after texting Kim I’m not feeling like a fraud anymore, but lucky.

I have a lot to be grateful about: I have a future, I have a job, I have wonderful friends, I have a supportive family, I’m doing a part-time degree, I have freedom to a certain extent and I have mostly good health. But it doesn’t stop me feeling alone at times.

Another aplastic anaemia ‘survivor’ has made it known that they understand which helps a lot but there are people around me who frustrate me with their ignorance. I’m not a book cover to be judged. I’m deeper than that. On the outside I might be smiling but on the inside I’m often screaming. I’m not free from any of what I’ve been through. Whether people like it or not, this disease is a part of me and who I’ve grown into. You cannot go through something like this and come out the other side unaffected without being a robot. I’m not free of hospitals nor will I ever be. I still struggle with tiredness and no matter how much I try or I want to, I cannot simply forget all that has happened.

I often wonder how my life might have been had I not had aplastic anaemia. Would I be married? Would I have a child? Would I be Prime Minister? Would I be living in the UK or living in some exotic country? How might my life had gone if I didn’t have to put it on hold and temporarily stop living?

I know that it’s no good imagining what might have been because no one could ever answer that. My life has gone the way it’s gone and I’ve been a passenger until recently. I’ve taken control again. I’ve taken steps towards normality. I’ve got a part-time job which I’m proud about and I have ambition: to become a Biomedical Scientist. I didn’t imagine these two events occuring four years ago, let alone the rest of what is going on in my life. Mr Good Looking (a day dream crush) to look at, a social life, being able to honour commitment instead of cancel them for a transfusion or being in hospital. At the same time, I have other battles to fight but here I am four years on and I’m very happy with who I am. That’s all that matters to me.

The Perfect Boyfriend

I was gifted with the most amazing present this Christmas: the perfect boyfriend.

Perfect he is, even if he’s a bit wooly. He doesn’t talk, he doesn’t tell me what to do, he doesn’t nag, he doesn’t moan. He takes up little space, he doesn’t make a mess, he doesn’t take control of the TV remote. He is perfect.

On Boxing Day I introduced my perfect boyfriend to my brother. I said “say goodbye to Mika” which promoted a WHAT THE… moment.

Yes, my perfect boyfriend is called Mika. Mika, after Mika Hakkinen. I had great fun knitting him. If he carries on the way he is, I foresee a long future ahead of us.

Thank you Mr and Mrs G for a brilliant present!

Train v Car

This is a bizarre topic to blog about.

All these environment orientated charities, the government and the like all bang on about us using public transport more and driving our cars less. I quite agree with these folk but there comes to a point where it is cheaper to give a car with just myself inside than go by public transport.

I’ve thought about it. I’ve done the Maths. My options:

In my car: I pay approximately £14 a day in petrol = £14. I then pay £1.50 to park at the park and ride = £15.50. Then there is the £2.40 bus fare = £17.90 (per day).

In the train: £3.50 to park for more than four hours = £3.50. Return train fare is £11.20 = £14.70. Then I have my bus fare at £2.60 = £17.30 (per day).

So, I’m better off in the train by 50p. At the end of the day, I probably break even when I take into account that I will be driving too and from the train station. But the swaying factor?

I noticed on Tuesday evening, whilst I was preparing to drive to a friends house, that my main bulb was out. I decided I wouldn’t drive in the dark until this bulb had been changed – safe, legal, etc. I went by train to university yesterday and I cannot believe how much work I got done in the two hours on the train (approx. an hour each way).

I only hope and pray I can get a parking space at Blackwater train station. I really don’t want to be asking for a lift twice a week, twice a day. This is the issue: when the train companies / council’s don’t build appropriate parking areas for potential passengers then they are going to resort to taking the roads in their cars. This will certainly be an issue for me: if I can’t park, I can’t go by train. I’ll be out of pocket by 50p (if that).

I guess what I am trying to say is that the extra study time is the only reason I will attempt to take the train – I find no other incentive being offered by those trying to keep the drivers off of the roads.

The AA Meeting

No, I didn’t go to an Alcoholics Anonymous meeting, I went to a National Meeting about aplastic anaemia and I met some really nice people. One person in particular who I met was Kimmy – from Facebook. She is a really lovely person and it was finally great to put a three-dimensional person to the name on my computer / iPhone app.

I’m glad I went to the meeting. I know Dad was a bit bored but I’m glad that I went and I am glad that Dad went – not only did he learn (I hope) a bit about my disease but hopefully it introduced him a bit into my biology-learning world. Plus, he got a KFC.

I went along mostly interested in two things: 1) meeting Kimmy and 2) learning about the on-going research regarding aplastic anaemia, treatments, diagnosis, cause, etc. I went in with those two interests and expectations and I came away with them met and a lot more. I came away having heard about other patients experiences and not feeling quite so isolated; I’ve heard the struggles that other patients at similar stages to me and I can relate and don’t feel so stupid to tell my doctors now “I am tired and no, you idiot, it’s not unusual, I am not alone in this”. I have met people who have had success with the first-line immune-suppressing treatment. I have learnt that protocol has changed regarding rejecting an unrelated bone marrow transplant – and how they would use a half matched sibling / parent / child as a second transplant. I’ve learnt about the chimerism, the possible specific T-cells involved in the cause, how the risk of graft-versus-host disease may be reduced (by having your own and your donors immune cells). It was all really fascinating stuff and I also have some notes worth keeping (as Kimmy, an already graduated biomedical science person, as told me to do).

I guess the point to make from this is that I got out of the meeting that I hoped to get out. I don’t regret going. I don’t regret sitting on the M42 and M6, bored out of my brain, stuck in traffic. I don’t regret a minute of it; plus, I got to see my Dad.