Chemo#4 went ahead on the 18th September, where the healing marks on my hand, from a 'reaction' to Chemo#3 attracted some attention. The reaction was slight and hadn't bothered me enough to let any medical professionals know, so I was quite surprised at the scrutiny it received.
Thankfully this did not delay chemo, however I did leave with Doctors orders to report any reaction and with a recommendation that I be fitted with a PICC line if there were any further problems!
I tried to convince the Dr that I could continue to cope with the reaction on my hand and explained that I was desperate to avoid having a PICC line. He seemed to have no doubt that I could , however the Dr explained that this could cause longer term implications, but ultimately that it ‘is up to me’ if I had a PICC line fitted.
I’ve been hearing the ’it’s up to me’ quite a lot lately which now seems to invoke an involuntary ‘eye roll’ every time I hear it and I try sooooo desperately to hide it.
In presenting my case and reluctance to have a PICC line, I explained the problems I had in 2014, how I had to be fitted with Groshon and described the impact on my day to day life, all hoping to provoke an exchange of thoughts that would enable me to feel satisfied that the PICC was the only option. I’m pleased to say that the Dr took time to listen, however ‘It’s up to me’ was as far as any ‘debate’ went.
Sure enough, little blisters started to appear 5 days after chemo and with the biggest of sighs, I updated the out of hours Oncology service. Whilst no action was necessary on the Sunday when I called, a follow up call from the hospital on the Monday led to a visit to the assessment bay for fear there was concern, I was experiencing cellulitis.
The Dr who assessed me was happy that my hand wasn't infected, but again recommended that I be fitted with a PICC line as I had reactions following 3 out of 4 chemo’s. The Dr acknowledged my reluctance, but again said ‘it was up to me’, he suggested I speak with my oncology team about it and quite efficiently he arranged an appointment for me that very afternoon.
I spent the time between appointments on google, researching. I had resigned myself to the likelihood that I would be fitted with some sort of line, but I wanted to understand the whys and wherefores. I came a cross a Portocath on my quest for information. I know a few people that have had these fitted and learnt that the portocath is fitted under the skin, less obvious, less chance of infection, lower restrictions on activity levels and basically just less of a impact medically and as I see it, on quality of life. BOOM exactly what I was looking for and I made note to talk to the Dr about this.
The registrar I subsequently met with that afternoon seemed initially perplexed as to why I had an appointment at all. I quite patiently explained the events, my thoughts and why I was there, but I could feel my eyes welling up. I was feeling quite exhausted by all the goings on and was deflated by this start to the appointment. I hadn’t realised how on the edge I was of an ‘emotional wobble’, but I am glad to say things did pick up but not before another silent outburst with an involuntary ‘eye roll’ , when the ’It’s up to you’ moment came.
I was hearing what medical professionals were recommending, however I was stuck on the ’nonchalant’ , ‘it’s up to you’ approach by professionals, with what seemed to be a standard, text book route which felt quite detached from me as an individual. What I wanted to feel is that it was a right decision and not just the easy decision. Unlike the last time I had one fitted, this PICC line will be in for unlimited period time, as I am now on a life time of treatment and it's quite right that I manage the decisions that will affect my quality of life, well.
Just as I was becoming exhausted into making the decision to have a PICC line, Dr Knighton spotted me through the open door of the consultation room and ‘charged’ in like a ‘knight in shinning armour’ from a scene of a medieval movie, with his trademark warm and personal greeting.
So Dr Knight-in-shinning-armour (lol), immediately gave a medical term to the ‘reaction’ I was having. He called it ‘extravasation’. So there was a word for what I was experiencing, I hadn’t come across this in my research. I had come across things like infiltration, however nothing that gave me the measure of the concern, that my subsequent googling of extravasation gave me….eeeeeek!
With a hand hold, eye contact and an “of course it’s up to you” as a preamble, Dr K left no doubt that a PICC line should be fitted to avoid risk of necrosis and all sorts nasty plastic surgery stuff. He took time to hear about my previous experiences with the PICC and Groshon line, and I asked him about a Portocath. I think I actually asked him about a ‘cath’, (#chemobrain) but he knew what I meant, and he explained that this was not usually available on the NHS, however under the clinical circumstances he asked his registrar to make a case and refer me on for the procedure and request a favour for this be completed under the NHS.
Finally, I'd had a fluid conversation and I left with a plan that I was happy with. Things were put in motion quite quickly after that and today I went for my pre op, so I'm all ready now to have the Portocath fitted under general anaesthetic on 2nd October 2017.
A pre-pre op cake moment with Jules
There is much to be said for patient choice, at it’s best it has been empowering, at worst I have experienced it as overwhelming. 'Supporting' patient choice is crucial and I would say a skill which Dr K clearly has. You will recall that Dr K presented me with a choice as to whether to continue with chemo or not, and his approach to the PICC or not to PICC , has given me is a measure of his threshold on this choice thing and I feel much better about being left with the chemo decision, as I know that he will ultimately give me a shove in the right direction.
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