Weekly Blog No 96 – Life Continues

I thought it’s been a while and I should give you an update and elaborate what I’ve been doing in the mean time. 

I’ve been missing in action for a while now because of the challenges of carcinoid cancer. It’s been an  ongoing obstabcle course and I’ve had to climb over walls, swing on ropes and jump through hoops. Only, my adventure is not the wonderful experience you would imagine. 

My new Family Physician has been excellent and on the ball referring me when there has been concerns and there haven’t been many. I had scans, tests and Specialist appointments. On one appointment my medication intake increased a further 5 different meds due to my symptoms. The medical hamster wheel never stops for me.  

Next week I have an endoscopy and the following week my GA68 cancer scan. My tumour marker blood tests that have always remained normal even though, I’ve had 3 cancer ops. My tumour marker result has done a long jump out of normal range with a personal best and doubled within 6 months. Well done cancer, what are you telling me now.

Here’s comes the honestly part. There has been occasions were I have thought is this my downward spiral. Do I seriously need to get my life in order before I decline anymore. My life was in complete order in Canada but isn’t so complete in the UK. It’s something that I need to address. I have ideas but it needs to be down on paper.  

I’m not the person I was and my life has changed so much. I miss work but I do understand why I can’t work. Furthermore I’m don’t have the freedom I once had but I’m also grateful for the freedom I do have. Going anywhere is a challenge, yet you have to try to get to places if you can and Mr Zebrakat is very supportive and never a whinge is heard.

I’m not a crier as a rule, however I did end up crying to Mr Zebrakat a few weeks ago when nothing would take the pain away. It was a Sunday too, so not everyone was accessible for assistance. On the Monday my butt dart nurse saw I was out of sorts and crossed the procedure line to get me assistance. A box of chocolates is in the waiting for my next visit. Thank you so much to my nurse and her diligence.

You do start to question things, for instance, is this it, or if your deemed to have an extended life, how can you possibly maintain symptoms like this every single day. I now understand why people want to throw in the towel. Trust me it’s very easy to comment on these things, when you haven’t physically experienced it yourself. Therefore please be mindful when discussing people’s health issues. I have personally made comments on people’s health in the past, saying I don’t understand why people don’t try more or I don’t understand why they are doing that blah blah blah. Speak to the person and get their prospective on the situation.   

Yes it’s wonderful having a life but no one wants to be feeling horrible everyday. We have all had a viral infection at some point and you feel so terrible. Imagine that feeling most days, it’s the only way I can explain some of the symptoms/situations. Don’t worry, I’m not giving up and my Specialist is working hard to control my symptoms.Thank you Prof C.  The reality is that I may look ok but truth is my life is tormented by my cancer. 

My priorities have changed in life, what may have been my 1 – 5 year goals have immediately become my current goals. I’ve been fighting this for 4 years on Mothers Days (UK), which is a wonderful achievement. Even longer if you count the years it was growing inside me before being diagnosed. 

I will continue to fight and challenge my body. I will keep reading and thank you to Auntie P for the continous supply of reading material. I will be lost in Victorian times for a while. Thank you to K for keeping me up to date in showbiz gossip.  

The house renovation plans are nearly completed for Local Authority submission, well done Mr Zebrakat. Roll on brick dust. 

The garden is now missing a silver birch tree, conifers and  a vine. Hello, fresly painted bird table and proposed space for veggie boxes.  I have sowed some seeds indoor seeds for bedding plants and veggies. A new skill for me and I’ve been learning from others and a big thank to Lady T for the beginners guide. 

I’ve also being working on Mr Zebrakat family tree and mine at times. His is my priorty, I’ve rechecked the facts that I have gathered to ensure that I’m following the right line. It’s amazing how people attach your family members to thier family tree. Clearly assuming that their family member is married to yours.You can’t make assumptions, you have to get the certificates to double check the info provided is correct. The Scottish certificates tend to give a little more info, like marriage date of parents and addresses making the trial a little easier, although I will be crossing over to Ireland now. I know with my family tree, Ireland is a little harder to trace and I believe a lot of records were destroyed by the British. However on a good note, Mr Zebrakat was able to reconnect with a 1st cousin through my research. #happydays.

Althrough i’m problematic times and I may question things, I’m still proactive in one way or another. I would to thank Mr Zebrakat, my family and friends for keeping me going, you know who you are. #specialpeople. 

Weekly Blog No 76 – Phyiscal and Mental Scars. 

image

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 😄