2 July, 2011

Well, I guess it was a 'normal' day at the hospital on Thursday...

The BCN I have seen a few times wasn't there and a very rushed, younger BCN shouted my name from behind a pillar when it was my turn. I got up and started towards the corridor and the rushed BCN came around the corner almost bumping me over shouting my name again. She talked as she walked, in the end, a long ways ahead of me, and kept stopping and looking at her cell phone.

'My' BCN was away and hello, her name was.... and we'll go in this room... She asks me to get undressed three times - (I was getting my coat and sweater off, and she was just darned impatient - and I rush for no one). Asks me to lie on the bed thing. I get on and lie down, she says to sit up. She says she feels no fluid in right breast/side/under-arm/back area that had drains removed when just one drain was still giving out 80cc's a day and the other about 20cc and the swelling is now that I couldn't exercises properly for a couple of days. I says, 'OK' are you sure. I explain that I am having a bit of trouble with the pain killers and constipation, bloating etc...and have cut down on them to try to fix my stomach.She gets cross and gets another nurse (it is almost 1pm by this time and the other nurse has obviously been eating when she pops her head around the door, looks at me and says 'No, no fluid there that I can see!' Stranger BCN 1 prods and pokes and only then takes off the dressing, very roughly, and I whince a few times. She says very aggressively that there isn't as much movement as there should be - that it is tighter than it should be - that I will END UP WITH A FROZEN SHOULDER (loudly) if I don't exercise. I tell her that even with more pain (after cutting down the painkillers) that I have still exercised about four times a day in the past couple of days instead of my usual ten or so. She again almost shouts and says she will write something down for me as I dress. I sit on the other seat as she finishes writing...

Mackie ...... paracetamol 2x3 times a day (if she had looked at my notes, she would have seen that Tramadol, diclac and paracetamol seem to constipate and bloat me to a point that I am woken with pain in my stomach a few times a night) Oxynorm 10mg morning, 10mg evening, hands the paper to me and makes for the door, opens it and says for me to continue exercise and then disappears down the corridor. I am left stunned. No telling me that I should make/wait for another appointment, ....just leaves.

I make my way down to where I see an open door and ask for directions to the Onco dept. I look at my cell-phone for the time and find I have been in with this BCN for 6 minutes in total. I vow then in my mind never to come back to this breast clinic.

Made my way to Onco-Man and saw the lady at the desk. I sat for only about fifteen minutes and was then weighed (ooooh don't those hospital scales lie their little digital heads off and put at least two kilos of weight on your poor little body every time!  ) Onco-Man is ok, and I tell him of my interesting visit with the BCN - he asks if I informed her of her intimidating and aggressiveness and I tell him I didn't have time to do so as she disappeared so quickly and that I didn't dare say anything because I would have dissolved into sobs, given my emotional state right now. He is not pleased and says she needs to know. I agree.

I ask him how he would feel about removal of my remaining breast, as a preventative measure, bearing in mind that two of the cancer's found in the other one were invasive and agressive and can appear in the remaining one several years later. He said an outright no as I don't have the cancer bearing gene. I tell him how does he know that as I don't even know, bearing in mind that I am adopted and have absolutely no idea. 

He starts to ask me this and that and I hand him my neatly types letter, asking for a transfer to the UK. He asks what support I will have there and I tell him. I also tell him that the hospital provide counselling in Southampton which I believe I badly need, and have a 'feel good - look good' program that I would love to attend. He says, puzzled, that they provide the same thing at this hospital and how did I get on? I tell him I have been offered neither. He is shocked. I tell him that Southampton has got to be better than simply being discharges and given two BCN appts, one of which he has already been told about and touched on the other, briefly. He asks whether the community nurse has been, given where I am staying (out in the countryside, a mile up a small mountain) and I tell him she came towards the end of last week, and had also been disturbed to hear of my non-support from the hospital. I also tell him I am running a lottery for me and several online friends, to see who would have been the winner as to when I actually would have started chemo, as I have been told....2 weeks time, twice a week meaning I have little life expectancy if that one is carried out) - 4 weeks time, once every three weeks and 6 weeks time, don't know how far apart and after an MRI. He is very cross and it is obvious.
He gets up from his seat, red faced and puts a hand on my shoulder and says he will call the UK now and for me to write down the address of my good friends in Soton as I will need to have an appointment for Southampton sent somewhere and can change the address with them when I have moved there. I hear his call from his office. He is very sweet on the phone to Soton hospital and it is obvious from his side of the conversation that I hear, that I am accepted. He returns and says he is very sorry about my experience at Cork University Hospital and I tell him that so am I and that the BCN's certainly don't seem in the right job and only add to my damaged emotional state. He is over-sorry, as I suspect that he thinks I may report the matter, but also seems to be giving me his support to report it, in a roundabout way.

He says he wishes me the very best in my journey through cancer and also to the UK and that he is sorry, again, that I seem to have been 'the one who slipped through the net....several times'

I walk out of the hospital, wondering what the heck the last few weeks have been and actually feel abandoned again in a strange way - though I am happy I will be going to Soton (14th July, night ferry - arriving 15th July in Swansea and the auld fella here Don, bless him) will take me in his van, with all my stuff).

Now to get a place to stay (friends in Soton are helping with that) and hope that Soton Hospital have a little more care than Cork University hospital.....oh well, I live in hope.

I am afraid... I have never lived in Soton, and I guess as I don't feel very strong right now, that I am a little fragile about going. BUT, I believe that I will have less pain and discomfort by the 14th and hopefully feel a little better emotionally too, so that I can at least feel better about starting this new chapter of my journey.

So ends my journey through cancer here in Ireland and a residency since 1994. I will leave the same way I came - by ferry - except not with my beloved pets this time and begin again in the UK while waiting and planing for my son and hope to God he gets to join me very soon.

The BCN called yesterday, Friday, to tell me I had an appt for an MRI next Wednesday at 9.am.  Not looking forward to it as I have to lay on my stomach and have teh remaining boob poking through a boob-catcher for  between half an hour and an hour - not sure how they expect me to be able to do this for that long, when I can't raise my arm up when laying on my stomach - oh well, again ours is not to reason why!  I suspect they want to give me an MRI before I go off to Soton or were perhaps requested to do so from the Hoispital there - I don't know, all I know is that I'm afraid of being bullied again by Cork University Hospital and will simply not do what I am unable to do on Wednesday, and am NOT going to let them intimidate me ever again.

Probably won't know anyway, before I leave on 14th, what the results are and have asked Don to take any calls from the hospital after Wednesday - as I don't think I could emotionally cope with yet another visit with bad news, just prior to leaving Ireland.......toooooo much - I've asked Don to worm out of them, if they call, as to whether it is good or bad news.  Good news can be given to me over the phone and he has promised not to tell me about any call after Wednesday from them if they won't tell him (bad news position taken by hospitals) and simply ask them to forward the report to Southampton and let me find out from them, after the move.

Blessings to all for as good a weekend as is possible for you, thoughts and prayers coming your way too - now and always, dear friends.