GP appointment - Friday, 9th September 2011

As previously discussed in my last post I managed to get myself an appointment with the GP on Friday afternoon.

I explained that my list of issues was growing longer by the week and that I also still hadn't received the letter from the hospital team after my outpatients visit there in July. He had now received it and printed me off a copy.
So we sat and went through it together - not that there was much in it to actually go through!

I pointed out a number of things that I remain unhappy with (in this particular letter and with regard to my after-care)...first off it states in the letter 'completed Chemoradiation treatment in July 2010'......
........Chemo was stopped after just a few days and Radiotherapy was stopped after 18 sessions due to excessive burns and skin damage...NO mention of any of this and as far as I'm concerned that is important information for my GP to be made aware of.
Letter also goes on to say 'good response to neo-adjuvant RCT' which again was not what the surgeon told me back in September. He actually said 'minimal response - the Radiotherapy did not destroy the tumour and it is virtually the same size as pre-treatment'...

Then it mentions that Carole  'is concerned about her ongoing tiredness and weight loss'.......
No I'm not...I AM concerned about the overall fatigue I still experience at times but at no time did I say I was concerned about my weight and I've definitely NOT lost weight - I'm back to my pre-surgery weight which is where I've been all of my adult life.

The letter then gives two completely inaccurate dates for CT scan and MRI scan (both in August)...I informed the GP these were both wrong, did not take place and were never planned to take place.
I showed him my letter for my next CT scan (in September) then we discussed that my outpatient appointment had been moved to November - he was not happy with this decision and will be raising with the hospital team.

He was also concerned about the decision to rescan the pelvic area after Christmas, which will be 6 months after they noticed 'inflammation' in the original tumour site....again he is going to ask for clarification on that decision. He felt that if something had raised concern in that area a rescan should take place after 3 months - as is happening in the lung issue. I said I was definitely unsure that leaving it for 6 months was wise as if it was the worse case scenario, we are giving half a year for new growth to take place.

My letter ends with 'patient declined adjuvant chemotherapy due to significant toxicities with neo-adjuvant'...which is exactly what I'm pointing out to the GP - how could I have completed in July 2010 when in the same letter they point out the toxicity problems caused....

At no point in this letter have they mentioned the bone issues I've been experiencing, no mention of either the shoulder or rib area despite me raising it with the surgeon.
Also no mention of the rectal wound that still hasn't healed, no mention of my concerns that my breathing never did return to normal after my op, no blood test results reported to him.

The letter sent to my GP makes me sound like a completely healthy person who has complained of feeling tired and being skinny !!!
Oh wouldn't that be so bloody nice just to be 'tired' and 'thin'......

My GP is writing to them on Monday (email) and raising questions about my care plan and also asking about the bone issue - he is happy to send me for a bone scan but wants them to say it is advisable first (I don't know why - and to be frank, I don't much care, I just want to find out what is causing this ongoing pain).
I asked if I could go ahead and book a couple of osteopathic appointments whilst I'm waiting for him (GP) to get back to me - he said 'No, absolutely not - we need to wait and see what the scan shows first'...I asked him what his thoughts are and he said 'We have to consider all possibilities, including the notion of secondaries'.....My thoughts exactly - thank you GP :)

My GP is going to ring me Friday morning with an update of all issues raised and tell me what the plan is for a scan on the bones.

So in the meantime I'm taking over the counter painkillers at night, just to try to take the edge off it so I can get some sleep in. Update once I know more..

Going to do a separate post later on about other things going on in my life - unconnected to cancer things :)