All gone a bit quiet on this thread. Is that from finishing up on the chemo side or because coronavirus has changed things? I'm about to start Kadcyla though which seems to be part targeted therapy and part chemo so I'll still hang out here a while.
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Pam (newgrandma) Sorry you've come across the same challenges that I have.. Now I've finished chemo and am post my immunocompromised week I am hopeful that A&E is a thing of the past. I've been there enough (as am sure do many other in our situation) to last a lifetime, initially it was quite exciting, now I'd do anything to avoid! You are spot on that the more ports there are in use the more pressing we make the need for more training & education, and despite the challenges I have faced using the port more widely it was one of my great decisions and I'd also recommend that anyone undergoing chemotherapy gets one implanted. I have progressed my "port usage" mission further, and would suggest that others may wish to do the same, if not for yourselves then for those who come after you. I wrote an e-mail to the hospital CEO before Christmas outlining my disappointment at the MRI units "policy" and unwillingness to use my powerport (even when already accessed by the chemo dept.) and this resulted in me being accompanied on my MRI earlier this week by the Deputy Director of Nursing who is looking to ensure that training to use ports is done in departments other than the chemo unit. Both of us challenged the consultant in the radiology dept however they were unwilling to budge from their ignorant policy of refusing to use anything other than cannula's to deliver the high pressure contrast. I did make the consultant agree (and shake on it!) to review their daft policy and invest in some training to achieve the patient centred care they always quote (but rarely achieve) in radiology! Not surprisingly during the cannulation the radiologist failed to cannulate me successfully (the last attempt worryingly resulted in me having to demand after several times asking, to remove the cannula as it was causing considerable pain) and had to call a consultant - no surprise and was glad to waste their time! I have also attempted to warn others that they may want to consider other local hospitals, who I am aware do use power ports to deliver scan contrast, rather than the one that I've been using. So I've also left feedback on NHS review website re the above and also let the CQC know of the lack of patient care in this dept. And agreed AnnieJ its beholden on all of us to assert ourselves, its just a bit easier for gobby northerners like me, but the more we make a noise the greater a likelihood that things will change. I think I've done as much as I can and hope this means that those with ports can use them in the future to their full extent at my hospital, that the NHS can get value for money from their investment and that cancer sufferers don't have black & blue arms like mine! Good luck to all Sam X
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