"Lack of dignity"

I went for chemotherapy at the Seamoor unit. 

Previously I had had a very positive experience with the AOS nurses at NDDH when I was very ill following my first chemotherapy at RD&E. 

Unfortunately my experience while receiving my chemotherapy at the Seamoor unit was not very positive. 

I understand that chemotherapy patients are vulnerable but the rest of the hospital are allowed a visitor at the moment and I would suggest that most inpatients are also vulnerable. 

When you are normally fit and well but find yourself having to have chemo and being extremely sick and tired because of it you feel vulnerable and you’re not able to advocate for yourself like you normally would when you are well. I would say it is cruel not to allow patients next of kin to sit with them during chemotherapy. Actions could be taken to reduce risks of COVID such as keeping masks on , washing hands and staying sat in the chair while the patient receives their treatment. 

When I went to have my chemo I had already been really poorly with the first one and was feeling very apprehensive about having the second one at all. Then I was treated by a staff member who seemed to take it personally when I declined the offer to remove my mask. The staff member pointed at two other patients and said well they are the same as you.  I felt like they were annoyed at me. 

I had decided to use the cold cap to try and maintain my dignity and keep my hair. In RD&E the nurses were wonderful providing conditioner and measuring the cap and making sure I felt at ease every step of the way. Unfortunately I had forgotten to take my own conditioner and headband with me to the Seamoor unit as I was so apprehensive I wasn’t thinking clearly. The same member of staff simply told me well we don’t provide them here. Which is fine and I didn’t expect them too, I had just forgot mine and felt there was no need to be spoken to in that tone. 

Then as they rammed the cold cap down onto my head to try on for size it pulled on my very delicate hair and caused me concern that this would lead to more hair loss. 

I had spoken with my oncologist two days before the chemo and we agreed that all of my medications could be given IV as I struggle to take oral medication. So when I was presented with the largest capsule I’ve ever seen I was concerned that I would not be able to swallow it. I explained my predicament to the nurse who told me that they had ordered this in especially, which was irrelevant to me as a patient and just made me feel like I was creating a problem for everyone. 

After my chemotherapy I have an injection which is supposed to be administered over 8 minutes and was actually administered over 7 minutes. I felt like the nurse didn’t know this was supposed to be an 8 minute administration as they had no clock in the room and no fob watch on. I therefore mentioned the time for administration just before and they then got their phone out to set the stop watch (I didn’t feel like they were going to time it at all unless I said something). 

After my treatment I asked where to wash my hair off because you use the cold cap you have to put a lot of conditioner on your hair. I couldn’t believe it when I was told there is not large sink with shower head attachment or a shower to wash it off. Apparently no one had ever asked before! I found that hard to believe.  The whole point of using the cold cap is to preserve dignity and then the Seamoor unit expect you to walk back to your car with a head covered in conditioner. 

I am normally a very stoic person but I cried and cried on the journey home. 

This experience may not seem horrendous to most people but to me it was. It actually made me consider travelling back to RD&E for my chemotherapy. Which is my plan if my next appointment at the Seamoor unit is as bad as the first one. 

I must say that my experience with the AOS nurses was totally different and very positive and this reflection is in no way related to the care I received from the AOS team.