Weekly Blog No 80 – Cancer Update

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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

Weekly Blog No 76 – Phyiscal and Mental Scars. 

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As a cancer patient you are left with both physical and mental scars. Everyone deals with these scars differently and for me I have evidence of both. Firstly I don’t have tattoos but you could say my chest and back is considered to be like a scar sleeve.  I have various sizes and all of them are of the same colouring. There is no particular art or precision taken when cutting the skin by the surgeon but why would they to be honest.  I do have, a cute dotted line on either side of my largest scar, were the staples were taken out. I think I had 50 plus staples to my longest scar.

Am I bothered about my scars, my answer is no because they all tell a story. Do they look pretty, maybe not to some people but who cares. The fact is, I do have them and each one has improved my well being at some point.

That’s the physical scars let me discuss my mental scars. My mental scars are not from the cancer diagnosis but from medical procedures undertook over the years. I’ve had two or three episodes that have showered me with fear. I always go into these procedures with my head held high but really I’m a nervous wreck. I never fear the outcome/diagnosis it’s the procedure that has me every time.

Let me explain, in approx 2006 maybe earlier I had a colonoscopy and for some reason I nearly touched the ceiling with pain. I don’t know of anyone as yet that has experienced pain with this procedure on the bowel that hasn’t been operated on.  This first mental scar has been taken with me on all future medical procedures.

Here’s the story of my biggest mental scar and the one that still haunts me to this day. Let me explain the JP drain, see the attached photo below of a Jackson Pratt Drain

imageI’ve had the closed drain option twice, the tube is fitted through a hole in your skin to the operated area. The balloon section hangs down from your body draining fluid. No one likes having plasters/band aids removed from their skin but this is a whole other level of pain when removed. Imagine this, I’ve just had major surgery so I am pain free, I’m also on morphine etc so surely this won’t hurt. “They pull the drain out whilst you are awake” the nurse says, I replied “its embedded inside my abdomen”. The nurse continues” it’s ok I will just tug it and then it comes out”. As I had been through so much already I thought this is a piece of cake. Ohhhhh how I was so wrong, two nurses standing by my bed ready to do the act.  The first nurse pulled the drain and I felt like my insides were being ripped out, when she replies “it’s stuck” she then talks to the nurse station, when the head nurse says” don’t worry just pull it harder”. Hello I’m still here and very awake even after another dose of morphine. The second nurse grabs the drain to pull, she holding on to the drain like she’s in tug of war race.  By this point, the other nurse is holding my hand, what the hell. OMG the pain, when she pulled the drain it was horrific. I said never again, oh I was wrong there was another one when I had my liver resection and knew exactly what to expect. This time they injected the site in order to lessen the pain from my last experience.  That didn’t help me either to be honest. The drain experience has made me very apprehensive about every procedure since.

Last mental scar is my liver biopsy, I had this procedure just after my spine surgery, #3  and I was recovering in hospital, feeling ok and on the mend. By this time, I had so much fear from my first JP drain, everything I was going to have done was deemed to be on that pain level. I’ve figured I have become the most oversensitive patient due to my JP drain experience.

Waiting for the biopsy was making the whole experience worst, I then had the screens in front of me showing the tumours so I was going to witness the core samples. It just added to my fear and I was awake again but given a local anaesthetic.

Are you kidding me, the pain was up there, trust me. No one prepares you for that clicking noise, when the core sample is taken out and the pain after.  When I got back to the ward, they had to do me a cocktail of drugs for the remainder of the day to ease the pain. The following morning I was ok again, like it never happened.

Therefore scars are not always visible to the eye but can carry emotions that no one can see, only you. It’s not just cancer and treatment that you have to deal with, it’s a whole lot of other things too.  I’m sure many of us can relate to this in one way or another.

Have a great day 😄