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The Story So Far (Or - My Side Of The Story Regarding My Treatment During My Current Escapade)
Just over a year and a month ago I was diagnosed with Metastatic breast cancer and Heart Failure.  I was also told it was terminal (actually they said "Palliative care" which means the same thing).

Whilst most of my interaction with the Medical Professionals subsequent to the diagnoses has been faultless there have been times when I wanted to ask them to treat me as a human instead of a caseload.

Some of what I am going to say in this blog post is personal to me and my situation but other things are what I feel should be done differently for everyone's benefit.

The funny thing about a diagnosis of cancer is the fact that - if you are like me - it doesn't quite come in the way you expect.  I am a bit like a computer.  OK so my "logic" function may not operate in the same way as everyone else but I still try to get information in some sort of order.

I remember when I was told it was probably cancer.  I remember this because the first thing I was told would give anybody a clear indication of exactly what we were dealing with was actually the last thing to hapoha before I was discharged from Glenfield Hospital in June last year - a biopsy.

When it became clear that not only was it cancer but it had spread the Doctors took my first choice away from me.  I was trying to deal with the news in my own way (at that point I was actually working on the - sensible due to what had happened to my Mum in 2007 - that I would be dead within a month).  What I did not need at that point was to have a continuous reminder of the seriousness of my situation as a result of having Palliative Care nurses set on me without my permission.  They may well exist to make life easier for people like me but I just ended up feeling more and more stressed out when they appeared.  In the end I actually told them not to contact me again after I had been discharged.

The biopsy turned out to be a frightening situation for me.  Approach me with a needle or a bladed instrument and I had better be able to understand why you are doing this.  The Dr who did the first biopsy when I was still an inpatient might as well have been speaking in Urdu for all I understood of what she said to me!!!  The clarification came in the form of a letter I saw when I got home two days later.

The next person I saw was the Oncologist.  This lady is a bit "academic" for my tastes.  She also threw another possibility into the mix.  I didn't realise - until I saw her - that being half-Dutch (and taller than average) was a possible symptom of Madden Syndrome.  Stupid me thought it was a symptom of having a Dutch Mum and an English Dad.  Apparently this syndrome isn't life-threatening (even though I have actually got the associated heart and sight problems anyway).

What she did tell me - which no other Medical Professional deemed it worthwhile to tell me was an expected expiry date.  Now I could get some form of a plan together for how to deal with it.

During that first stint in hospital I realised when I was starting to feel more like myself.  It was the second time when someone called me "Caroline" and they were politely but firmly informed that I am "Ineke" (Caroline is my middle name).

The next thing which told me that things weren't as bad as I thought they were was when I was given the first error-filled story mixup.  My brain files information very quickly - particularly if the information relates to me in some way.  I didn't like the fact that one Dr had specifically stated one thing about some medication I was being prescribed only for another Dr to tell me a different story.  (Another thing which drove me almost literally up the nearest wall was their use of Medical abbreviations - I know I was born with a hole in my heart and I know the original hole was repaired in 1974.  I have yet to get the abbreviation for this lodged in my brain.)

Then we had the Heart Failure Nurse.  Both of these were nice and caring.

The Cardiologist I originally saw was a bit of an odd character. He was old-fashioned.  I mean that as a compliment.  No abbreviations, no "paint a bright picture where none should exist" but give it to me straight.

The next time I was admitted to Glenfield was directly from Cardiology appointment.  I was experiencing severe breathing problems.  It turned out that one of my lungs appeared to have sprung a leak in it letting fluid build up in it.  After that had been drained I was discharged only to return within 24 hours for readmission - due to a suspected asthma attack - which would probably have been avoided if they had read their own Discharge letter and fitted me up with the inhalers mentioned in it prior to letting me leave hospital.

My next admission to Glenfield Hospital showed me how well the hospitals in Leicester can work together when they choose to.  I had had a CT Scan at Leicester General Hospital the previous day (ordered by the Oncologist at Leicester Royal Infirmary).  I was admitted from my Pleural Effusion appointment at Glenfield Hospital based on that scan because my other lung had sprung a leak.

In the middle of all this I was having to deal with running around after medication (and - in one instance - having to convince my GP's surgery that the Oncologist had in fact prescribed one medication simply because it wasn't stated explicitly in black and white on the letter).  The stress caused by this isn't much good for anyone - never mind someone who has got multiple health conditions.

My most recent admission was - in some ways - the hardest for me to cope with because I ended up feeling all control of my situation had been taken away from me.  It still hurts though I have been discharged for a couple of weeks.

I was hoping that Leicester Royal Infirmary and Glenfield Hospital were going to get together and make sure I was in fact suitable for Chemo (I had been told when the escapade started I wasn't due to lack of reserves in my heart as well as capacity issues.  Apparently a dose of pneumonia and inflammation in the bottom of your lungs gets rid of any ideas you may have about coordination between Departments (never mind hospitals).  It also seems to get rid of coordination between different sections of the same Department as I found out when I went for my second chemo session.

The next "fun" bit was being informed that I was going to get a home oxygen supply.  Now, there is nothing wrong with it in itself.  The problem is - it has to be set up before the patient arrives home so it needs someone to be present when they set it up.  What happens when the patient hasn't got anyone they can call on quickly to go to their house and be trained?  More to the point, why can't they just train the patient???

I think I might actually have got a system worked out for the swapping of the Walking Tanks now.

I am aware that I am merely the patient but surely I should be allowed to feel as though I am at the centre of the decision-making process when it comes to my care???  It is not funny - feeling like a passenger in your own life as you career towards your death.

I purposely omitted to mention the fact that a disconnection between me and the oxygen supply point on the wall near my bed wasn't spotted until a few hours after the nebuliser had been disconnected during my last admission.  It was only picked up when my sats seemed alarmingly low during an early morning observations check.Luckily that was a one off occurrence.

I cannot fault the Health Care Assistants at either Glenfield Hospital or the Leicester Royal Infirmary.  Nor can I really fault the nurses at either hospital.  Some of the Doctors - however - need to remember that patients are people too with their own ideas and experience of their condition.  I feel happiest when I am allowed to discuss things and ask questions in my own time and way. 
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