Anita had her appointment for her months review after 3rd course of tabs. Date set and then I realised no date Re bloods or infusion which always happens prior to afternoon appointment with Macmillan Dr.
so rang hematology and after a few conversations i at last spoke to someone who said no she’s been cancelled. What! Can’t be. I’ll ring trials lady who said she would look into it. Then left a message for your own support nurse...Nothing!
then a lady rang me and was quite put out that I hadn’t grasped that due to Covid lots of cancellations have been made to protect the hospital and staff. So I asked if it’s ok if I stop giving the cancer related tablets as that’s the same thing!!
After a further heated discussion and of course no one had rang to discuss any cancellation of appointments.
so after a further delay my wife had been put bk on the list so appointment no booked.
Oh John, I am so sorry you have had this experience. I remember having lots of battles during my treatment and the whole Covid situation must be making things so much harder. You did the right thing in persevering, I learned that you are your own best advocate and if something doesn’t seem right, you’ve got to push to make it right. That’s not to say the NHS is bad, I’ve met some of the best people I’ve ever met during my time on treatment, it’s just sometimes everyone is so busy with so much work to do that a patient can fall between the cracks, so well done for pushing and getting the right outcome for Anita.
You’re right, sometimes it can be very lonely, but please know that you’ve got people here who understand what it’s like and are always here to help as best they can along the way.
Hi Greg, thank you again for your words of me moaning and stressing. funny this game isn’t it,Anita gone back to being sick again,not as bad as before but just when you think your doing ok. But the same day I had rang for the community nurse to look at mark on Anita’s body which has very little fat now and of course it’s a pressure sore. The nurses are coming every other day now. but we’ve got ourselves in a better place mentality
Unfortunately this thing is very much akin to riding a rollercoaster, and not in a fun way. I can recall so many moments of “3 steps forward, 2 steps back” and the two steps back can be really demoralizing. But I’m really hoping that you are still seeing a net positive in the long run and hopefully as time progresses you’ll still be able to look back and see how far you’ve come.
And yes, you’ve got to look out for you too, so do whatever you need to keep yourself in the best mental place possible.
Hi Greg, thanks for getting back to me so quickly. I think cause we had quite a few good days I got lulled into thinking we were on a role. But the late afternoons are still good with regard to Anita’s conditions.
Our son and our daughter in law and 3 grandchildren live in Orkney so we are now busy planning on visiting them later in the year so it’s something positive to think about.
In hospital for the monthly usual this Wednesday so we’ll see what they say.
Hope you and the family are keeping well and I bet everyone says...who are you texting now!
