Chemo Fail

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Okay, everyone who’s spoken to me or read the blog knows that my level of anxiety about having the first chemotherapy treatment today was a tad high.  Today’s post is as much about setting things out so I can remember as it is about updating everyone so I am sorry it is so long…

Almost no sleep last night then a short walk in the dark this morning to try to quell the panicky feelings.  David got up and I forgot to wish him a happy birthday.  A flurry of showers, packed lunches and school forms followed by dropping the kids  off to their schools before heading off to Calvary Hospital.

Dave got me to the hospital on time only for there to be confusion about admission which didn’t do my desperately held equilibrium much good.  With admission sorted, I was shown into the day infusion area and the nurses explained everything that was going to happen.  The first thing they had to do was to take the dressings off the port site, clean it up, check and flush the line.  The first sign that things weren’t going right was the intense pain after inserting the needle and trying to flush saline into the site.  The nurse noted and conferred with her colleague after not being able to draw blood from the port (apparently it does happen, occasionally) – her colleague notice that the surgery wound was weeping.  The nurse also wasn’t happy with the angle that the needle had gone in so it was agreed that she would take it out, give local anaesthetic and try again in awhile and she also called the Registrar to check if there were signs of infection (there wasn’t).  After half an hour for the anaesthesia to kick in, we returned to the ward and she tried again with a new needle, which hurt, and then flushed the line with saline which again was really painful.

It was decided that this wasn’t going well and they had to check whether the line was in the vein so I was sent off to x-rays.  (By now it was 12:30 and I was expecting to be finished and out of the hospital by 1:30.)  The film was checked by the radiologist and the oncologist so it was thought to be good to continue.

So, back in the ward and I had the cold cap fitted – expected it to be painful but it was quite alright.  Then came time to administer the steroid.  One of the nurses started to inject it but Dave loudly told her to stop – I was in pain again and he could see the fluid moving under the skin.  The nurse explained that this could just be local trauma (although the swelling was new and the handling of the site had been an hour earlier) and that the x-rays showed that everything was okay so they would go ahead with the IV drip of steroid.  Again, it was painful and Dave was watching like a hawk as he was pretty sure that something was very wrong and that the site was looking more swollen than could be explained by trauma.  He even got the phone out to take a photo of the swelling to see if it really was increasing or if he was just imagining it.  It wasn’t long before he called the nurse over to check it and she fairly quickly conceded that it didn’t look right.  She and the other nurse checked to see if the drip was free dripping (?) and it was but by that time the area on my chest over the port was very raised and while the pain was bearable, it was spreading.  I couldn’t see the site at all – all I knew was the burning and throbbing pains I was getting when anything was injected into the port.  And I was getting more and more frightened.

Anyway, the decision was made to stop and call the oncologist who came over to see me.  It seems that many of these things happen but not altogether and it looks like there is some sort of leak or disconnection with the port.  The saline and the steroid were being injected straight into the tissue!  I was given the choice of continuing with the treatment by cannula this afternoon and going back on Thursday for the port to be investigated.  Or, writing today off, recovering a little, and going back on Thursday to have the port scanned using dye and starting the chemo that afternoon by whichever method.  It looks, though, that the port is defective in some way and I will probably have to have a second op to replace it as something is dodgy there.  When the nurse finally “deneedled” me this afternoon prior to discharge, fluid ran out of the site.  Apparently, this should not happen and shows that the steroid was not going into a vein (or possibly some of it wasn’t going in).

The staff at the hospital were very nice but it became obvious that they hadn’t seen this happen before.  (I felt a bit sorry for the reflexologist who kept popping in to see if I was ready for a foot massage only for me to send away each time.)

If Dave hadn’t been there as my advocate, there is a distinct likelihood that the chemotherapy drug would have also been injected into the tissue as the x-ray had indicated that there was not a problem.  The nurses, of course, do not know me and do not know that I don’t tend to break down at the slightest hint of pain.  Dave, however, does know me better than this and he took on the very uncomfortable role of raising concerns even when he was being told why everything was okay.  For the chemo to have gone into the tissue would have been a seriously awful outcome as there must be absolutely no spillage from the veins.  (Dave and I believe now that the weeping wound was probably the saline seeping out of the weakest point in my skin.)  I don’t know what would have happened if the chemo drug had been administered and I don’t want to even think about the damage it could have caused as I know that I have to face up to Day One of chemo again.

So, in at 9:30am for a straight-forward 4 hour procedure.  Most of the day spent in tears from pain, anxiety and fear.  Discharged from hospital at 3pm in discomfort; emotionally and physically drained, and no closer to starting chemo – just more tests to look forward to, probably more surgery and 2 more days to get anxious about how I’m going to tolerate it.

Tomorrow morning I get to meet my radiation oncologist at the Royal Adelaide Hospital.  Yay for me!!!

Oh…and Happy Birthday, Dave!!!