For those of you who don't know, I am treated at St Georges and St Thomas' in London. Both teams are now very familiar with the workings of my body. I am sure they wish they weren't! But it makes it very easy when receiving treatment. Both parties are comfortable with each other, and as familiarity increases, then anxiety decreases. We now know each other so well, the treatment dates have almost become part of the social calendar!
But I realise, what this has done. I have felt so comfortable with the nursing teams, that I have taken them for granted!! I can't believe I have done that.I haven't yet written about the very important part that they play, in my general well being. Sure, I need the knowledge of the Consultants and Registrars, and the drugs, and the technical machines, but if I analyse things, my nurses have been with me at every step of my journey. The doctors dip in and out, but the nurses pull all the bits together.
If I think back 5 years, other than my initial diagnosis and prognosis, most of the rest of the work was done by nurses. Initially, I was introduced to a Macmillan Nurse. I didn't really understand why, but my only knowledge was that you had to be seriously ill to have a Macmillan Nurse. This worried me initially, but it was explained to me that she was an expert in my particular situation, and cancer care.Over time, people's understanding of the role of a Macmillan Nurse has improved and Clinical Nurse Specialists, are more common than they used to be. I think it is very reassuring to be treated by nurses who specialise in oncology and haematology.
Then there were the nurses who gave me chemotherapy. Wow, there's a job. A full ward everyday. The patients are generally anxious, and awaiting the very toxic drugs that can hopefully improve things for them.Everyone requires a different drug or combination. This requires check after check, and all this set against unforgiving time deadlines. These ladies were absolute angels. I say ladies, which is a bit of a generalisation, as there were several men too! Very patient and knowledgeable people, it was almost a pleasure to see them.
My case was overseen by a Bone Marrow Transplant Coordinator, who looked after all my appointments in the hospital. She coordinated my treatment, and worked with my stem cell donor, through the Anthony Nolan Trust. She became almost my secretary, and made life in the hospital that bit easier for me.
Moving onto my transplant, I was in an isolation unit for 6 weeks and was cared for 24/7 by another wonderful team of nurses. Those people did absolutely everything for me, in that time, including measuring body waste daily! They fed me, bathed me, clothed me, and anything else I required. I felt awful even asking them to do anything, and having your independence removed like that is a massive blow, but these guys totally understood, and nothing was too much trouble for them.
Bringing things up to date, I have my blood treated every two weeks and the team who do that are all brilliant too. A continual stream of patients with different problems, and limited numbers of machines. People arriving early/late for their slots, are all greeted in the same cheery manner. Their level of expertise is fantastic, and I have learned a lot about my blood, from these guys.
I now realise what a major part, nurses play in our treatment and care, and I feel are very underrated. I think it might be like most things in life.You don't realise what you have, until it is gone! They seem to do such a good job, I forgot about them. I'm sure they will find a way of repaying me!!!!!
Do you benefit from our wonderful nurses? Feel free to share your experiences.
I was diagnose with AML last April and the nurses that looked after me for 6 months whilst in hosiptal become more like family and become familar with me and could always tell when I was on a high or when I was very low and after a chat things didnt seem so bad.
ReplyDeleteLiving in the Borders there are very few people or such I say no-one that were suffering with AML and there was no network group for support after getting out of hosiptal and many days I am very low as I am stuggling to deal with the cancer. It there is any one out there whom has AML or in recovery it would be nice to hear from you, you never know we may be able to help each other coping with AML
Hi.Thank you for taking the time to write your comments. This is the very reason that I started this blog, as through my own experience, I realised that a lot of the problems we face, are outside the hospital.Particularly in areas like your own,that are maybe slightly isolated.
ReplyDeleteI realise, that although not everyone has a computer, it is a very convenient way for people to communicate, at a time that suits them, when they feel up to it.
Your experience,whilst being treated reflects my own.Your nurses sound like they did a brilliant job.
Although I didn't have AML, I had Mantle Cell Lymphoma, which has many similarities in terms of symptoms and treatment, I would be happy to to try and help.
If you could let me know a few more details,ie your treatment etc and some of the areas that you are finding difficult it would help me.
I look forward to hearing from you