I have not been keeping up on my weekly blog due to ongoing issues. My symptoms are relentless sometimes and can be from morning and continue throughout the night.
2 weeks today, I had a colonoscopy and I am waiting for the biopsy results. The bowel prep wasn’t wonderful but eating lighter meals for a few days before the procedure certainly helped. In Canada, you don’t remember the procedure that you had, which I thought was amazing. In the UK, even though the right drugs are given, you’re very much awake and you can feel some discomfort. I would love to be time machined back to Canada for this procedure. How can 2 country’s be so different. The GI Consultant knew I had a bad experience before in UK and he saw it, as a challenge to wipe away my bad experience. He was amazing and very compassionate.
The following morning I was seen by a Net Consultant not my usual Net Consultant and I will say he was greatly missed. Let’s just say fish & chips can work in harmony, where this one was more of a case of salad & chips, not so harmonious.
After digesting my salad & chips appointment, I did telephone the department and ask for a fish & chips in future. I don’t need to be considering side orders if it has no beneficial impact to my health or immediate care. You may think a side order of beetroot is good for me but it’s not advantaguous to me
I did walk away armed with medication and more investigations to be undertaken. I will start scans again next weekend, let’s hope there is a positive outcome
In the meantime, the Net Specialist Nurse arranged for a Macmillan Nurse to see me for symptom control. She was a breath of fresh air. More like caviar & chips lol. She has made further changes to my meds, including ones I already commenced last week.
She is arranging for a Specialist to see me at home to explore some more of my symptoms. The Macmillan Nurse is going to check in with me again early this week. I did thank the Net Specialist Nurse because local support is required when symptoms are ongoing.
My Family Physician has also referred me to be seen by a Gynaecologist on the request of the Net Team. I had a hysterectomy early 30’s but retained my ovaries. I’m having some pain in the pelvic area, we know I have disease in the pelvic area so we going to investigate carcinoid ovary or it could just be a case of cysts on the ovary’s. Let’s see what happens.
Overall there are lots going on, I definitely feel like I’m declining, however I look ok. Appearance is not everything. My medication represents a very sick person but it’s not out on show. Therefore there is no telltale signs. I like to think I just get on with it but having the Macmillan Nurse acknowledge your illness certainly makes you more aware that you really are ill and that is why these people are here. I will stress these visits are only for symptom support not end of life support.
Here’s a link to the Macmillan Nurse and the service they offer. They are the most compassionate caring people. My Macmillan nurse even hugged me goodbye on out first meeting. She wanted to keep Lottie too but that wasn’t going to happen. Lol
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