Weekly Blog No 134 – Cancer Update

I hope everyone had a wonderful Christmas with family and friends. I did celebrate with f&f over the festive period but it started on the 22nd with Mr Zebrakat’s birthday. I’m very tired now and my butt dart is due on the New Years Eve something to look forward too. 
My symptoms keep tormenting me and I don’t appear to be getting any respite. Although I have learned to deal with each day as it comes. If I’m tired, I will go to sleep, if I’m good, I will pull out a duster and attempt to do some housework. The life of a net patient has no real consistency, the symptoms can be endless at times but life is life and we are thankful for that. 
Just recently I had informed you all that my new Spine Specialist had reviewed a spine MRI from 2 years ago and had enlightened me to the contents. He educated me that the cancer had spread to the bones. He was going to do an up to date scan as now he had a baseline of disease. 
On the 21st Dec, he advised me with empathy that it was cancer and even showed me on the scans without requesting to see.  I could see the clear difference between scans. I don’t have a copy yet as it was done at another facility but I may wait for a month or so and I will explain why later. 
He pulled the MRI report and disagreed with the Radiologist findings, to be honest I did question the same findings previously. He just wasn’t happy with the Radiology Dept because they hadn’t produced all the images he had requested. He also informed me that I have a nerve issue but he wanted another scan before concluding with the way forward. The nerve pain alone is horrendous on top of spine pain is double trouble. He is going to discuss my case with another Spine Specialist before my next appt at the end of Jan. 
I will go for the additional scan, however my Oncologist Ga68 Pet Scan did not reveal bone mets. I do deem myself a complicated case because the Ga68 has not revealed all my previous tumours. My body has always been my earliest/symptom marker. My body tends to tell the real story. For instance, pain means tumours, high blood pressure means tumours and tumour markers rising in normal means tumour activity. 
I feel like I’m torn between 2 medical professionals again and It’s a position I don’t want to be in.  I don’t know if the Spine Specialist additional scan will be done before my Oncologist appt in Jan but it will close. I know the latest Ga68 Pet Scan shows more cancer growth in the liver and pelvic areas. My head is telling me, why wouldn’t I have spine/bone mets as I had 4 cancer ops where the cancer has been in various organs. Why wouldn’t the cancer travel around my body and not to my bones. My bones are not made of steel, that the cancer would just glide by and say “we can’t stick to that and grow, let’s move on to another tasty organ”. 
My last 3 Ga68 Pet Scan reports have all recommended PRRT treatment (Peptide Receptor Radionuclide Therapy). Yet the carrot is only being dangled in front of me and they are not allowing me a bite. I want PRRT treatment because I feel I have enough operations/symptoms to warrant it but I’m in their hands. I feel that my Oncologist although he listens to me, he’s not listening to my body and relays purely on medical data. I feel on occasions, I’ve had to fight my cause. For instance prior to my last op there was no scan that actually revealed the true picture and Ive had a few of them. I was telling my Net Team for over a year where the pain/tumours were. I think high doses of morphine and a lot of persuading finally got me into theatre. My tumour markers were rising within normal range, that’s another sign. Furthermore my blood pressure goes very high alongside the pain. 
I must be clear though, that 50% of my cancer does like to reveal itself on some of the scans. Therefore does the Oncologist go by the medical data or by my previous 4 operation history. 
On top of all this I have been saying for months my blood pressure is not being controlled by medication, that’s because of tumour activity. My GP/FP has attempted to provide some control but bless him, he feels like me, it’s the cancer.  My Oncologist did suggest that I go back to my local Cardiologist and did cc him in all his correspondence. Let’s just say due to red tape and unknown to me, I was previously discharged by him. In the meantime, I have started to display signs of possible angina symptoms. Do you see what I mean, there is no consistency in the life of Net Cancer patient. 
Following ECG’s, I was referred to the rapid chest pain clinic by my GP/FP. They were lovely and after various tests I have to have a 24hr blood pressure monitoring test and a heart MRI scan next month. 
Furthermore, following my cancer diagnosis the Net Team started me on thyroid medication. I couldn’t believe I was only previously on pain meds and I was now being sent out of hospital with heart, bp, thyroid and various others meds. That was a huge shock to me. Well for the last 5 years my thyroid has warranted a rise in dosage and it’s got to the point that I need 250mcg. My GP/FP says it’s the highest dosage he has ever given, therefore I would require a referral to the local Endocrinologist. My referral has been made and I won’t see them until March 2019. 
I should have seen my Neurologist next week about my migraines but the appointment was cancelled by them and moved to March 2019. I’m now questioning the cause of my migraines, which came out the blue. Could it be bone mets related. I will be investigating that one.
I think I have bored you enough with some of my symptoms but thank you for taking the time to read my blog as well. 
Love to you all ❤️
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Weekly Blog No 132 – Cancer Update

Cancer Update  

Immediate family have been informed.

Many of you may have read on my personal fb page that I seen a Spine Specialist a couple of weeks ago, who kindly informed me that the cancer had spread to my spine. He had viewed a scan that I had given him from 2 years ago. He has since requested an up to date scan and X-ray.

I went back to see my Oncologist yesterday and what can I say. After sitting with him for an hour, I’ve headed out the door again, for more bloods & urine tests, new meds, more scans asap, referrals to be made to local Specialists and Palliative Care Nurse.

Eight tubes of blood were taken yesterday and urine samples are to follow. I need to discuss the outcome with my GP and hand him a prescription request for medication that costs a lot of money. It’s very likely the GP will refuse to issue the 10 day course medication due to the excessive costs.

How do I feel. In one hand I do understand the process my Oncologist is taking, call it protocol but in the other hand, I don’t understand it, as my body is an enigma machine.

Let me give you an example, my Oncologist wants me to be referred back to my local Cardiologist to control my very high blood pressure. A known symptom for Carcinoid Syndrome/Cancer. He is obviously concerned, which is understandable to get this addressed. Recently my GP has been monitoring my hbp and it has increased my medication twice just lately to resolve the issue,but to no avail. My body tells me when my blood pressure goes high and that the likely cause is tumour activity. Therefore my hbp can’t be controlled because the dandelions (tumours) are secreting hormones to raise my blood pressure.

The medical data acknowledges tumours in various parts of my body but my body enigma doesn’t reveal the full extent. My body has a habit of not revealing the full extent of tumour loading on scans. (remember the grapefruit sized tumour in my last op). My tumour markers have always given me normal readings.

Here’s a question for you, Does the doctor go on medical data or listen to the patient’s body reactions. We all know he has to go by medical data and in the meantime, I will continue to endure endless symptoms and more invasive tests.

I’ve been here before, it happened in Canada and the result was I ended up in hospital. You will hear it here first: I will end up in hospital again because medical data doesn’t reveal the true picture and I will have to undergo additional surgery. These current tests may provide the code to my enigma and I may have to eat my words but let’s see. Subsequently it’s frustrating and I need the universe to help me overcome this obstacle. I’m grateful to all the people in the medical field who have supported me to date but in allow to rant.

Love to you all. ❤️

Weekly Blog No 120 – Latest Update – 5 Year

I recently informed you that I had a scan at the local hospital and I felt the Radiologist was basically blindfolded when writing my report. As suspected he or she was, my Oncologist reviewed the scans and informed me that I still have disease/tumours in the peritoneal, mesenteric and the liver. I know scans can be hard to review sometimes but even I knew I wasn’t out the woods. I must admit, I was hopeful that my previous op had eliminated all the disease from the peritoneal and the mensenteric . Never mind, the dandelions endeavour to take hold of my body but I shall keep attempting to eliminate them if the opportunity arises. I think this ‘Kat’ has nearly exhausted her nine lives.

On the 11th March 2013, I was rushed into hospital in tremendous pain with no suspicion of what was going on. Early that morning I was operated on, and later informed that I had bowel obstruction surgery. The surgeon sat on my bed informing me I possibly had cancer and I would have to wait for the pathology report. That day changed my life, nothing seems more important than family and friends at that moment. How was I going to break the news to everyone. One of the biggest things I’ve had to do in life and it started with Mr Zebrakat. This was the day that I decided to continue to be positive and whilst speaking to the universe, please give me 5 more years at least to achieve some things in life.

Well it was 5 years on 11th March 2018 and I was Genoa, Italy 🇮🇹. Let me explain, last week I went on a Mediterranean cruise, which was a birthday gift from Mr Zebrakat. It was initially booked to go on the day before my birthday so that we could celebrate on the ship, nevertheless my body had other ideas and he postponed the trip until March.

It made me nervous in many ways, even though I was feeling better. I still had issues that were still being addressed via medication. You can take all the precautions in the world but no one day is the same. I could be swinging from the ropes one minute and be considerably unwell within the next 5 mins. I’m sure anyone who has be fine one minute and sick the next will understand the rapid change in health. It’s not ideal but I have learned to live with it and to just take day by day. Mr Zebrakat of course makes everything more bearable and is never agitated or inconvenienced by my health issues. I’ve never known someone to be so chilled and who naturally goes with the flow. I guess Mr Zebrakat has adapted too and is grateful I’m still here. The story could be so so different as many of my cancer friends who were diagnosed the same time as me are no longer here. RIP all of you. 🙏

Unbeknown by Mr Zebrakat, when postponing the trip he didn’t realise that it was my butt dart week. It’s always hell going into it and hell coming out of it. As we had left very early on the Friday morning and my injection wasn’t due until the Monday, the earliest I could have had the injection was Saturday. Oh hell, what am I going to do was my thoughts. I did speak to my dear cousin, who’s a very experienced ER (Emergency Care) Nurse and who occasionally works on cruise liners. She gave me some invaluable advice. This is what I took from our discussion. 1. Make sure you take plenty of morphine with you. 2. If the butt dart was given by the medical team on the ship, it sounded like a lot of red tape. Therefore the responsibility fell on Mr Zebrakat shoulders with my guidance and no precious training of injecting intramuscular. I was a little anxious and of course he was too but he didn’t show it. Superstar ⭐️

I have to say my current nurse is lovely but I can feel the pain and have some blood on occasions from the injection. She has made my easier in many ways, crossing the line to get me assistance, therefore I’m reluctant to let her go.

Mr Zebrakat was so gentle, which is hard to believe when the diameter of the needle is like a nail, maybe a slight exaggeration. There was no pain and no blood and just a sheer relief from both of us. I think now that he’s ok with it, we will have greater freedom and not necessary be committed to being available for my butt dart appointment. Oh Mr Zebrakat, I forgot to tell you, the next one is due Easter Monday when the medical practice is closed.

Now this is the part I’m kicking myself about, I do consider myself to be very well organised. In fact I’m proud of my organisation skills and it’s a quality that Mr Zebrakat will always comment on. Well remember the good advice my dear cousin gave about morphine. Well I failed miserably by forgetting my morphine. This is a lesson for anyone taking medication, you must double and triple check everything. Mr Zebrakat said he never ask me, because he knew I was always so organised. Ha ha not this time and I paid for it too.

When my last morphine was dispensed by the chemist it wasn’t dispensed in original box. Yes it had the appropriate label on the white box but the contents were made up of left over packets. I know that is fine but when dealing with customs etc who have inquisitive minds it could look a little bit suspect. Therefore my plan was to take my morphine in an original box and the contents to be full strips of medication. Makes sense right, but I forgot to do it and brought no morphine. My cousin is most probably saying now, what did I tell you, I know lol. Well I went into withdrawal and tried to manage the pain with off the shelf pain meds throughout the trip. Being the tough cookie I am, I’ve got by but it did prove a couple of things to me. I can stop morphine when needed, clearly not the appropriate way. I’ve done it many times before including my recent visit to hospital, nevertheless I’m always put back on it for pain control etc. Holy smokes!!! when pain is not managed it is hell and withdrawal is diabolical. Lesson to everyone, double check your medication before leaving for a trip.

We knew that this trip, we would treat it like an all inclusive floating hotel. Not necessary get off the ship due to symptoms but enjoy what the ship has to offer and relax. We did theatre shows, fine dined, drank cocktails, enjoyed spa treatments & used thermal spa, watched movies, read books and went to the casino to have a go on slot machines. (We walked out the casino up in money). I will blog about the cruise next week.

I would like to send out a huge thank you London Luton Airport for assisting me with my illness. I managed to go through priority queues through security and the airline. A service they offer passengers who don’t require a wheelchair assistance but have an illness. I did feel a little guilty because I look ok but my symptoms are not. I actually did get a few stares from passengers and I’m suspect people just assumed I was a staff member as I walked passed them. When I got to the cruise ship, I had paid for priority boarding to avoid queues. You know and I know, queues at airports and cruise line boarding is always long and time consuming therefore priority boarding was a great start to my holiday. I do feel a sense of achievement for getting to the cruise and for being on the cruise.

Written whilst sailing across the Mediterranean Sea until next time. Love to you all.X

Weekly Blog No 110 – Lottie’s 7th Birthday

Another year has passed and I can’t believe it’s been 2 years since I left my homeland Canada. I’ve talked about things that I missed from Canada before but I know my human Mum’s heart is still in Canada. I know she’s missing her friends dearly.

I guess I am too, I miss my furry friends Oscar & Monty. My crush was Oscar, he was tall, dark and handsome, just like what most woman wish for in the male variety. Monty was pretty submissive in my company but could give a great chase for a big dog. Oscar on the other hand was not only handsome but he had adorable ears, I would like to jump up and bite them. It’s not like my furry friends can jump on a plane and come see me nor I to them. Never mind, I will continue to dream about Oscar chasing me through the snow or rolling around the floor with me. Ahhhhh that’s love.

Oscar

Monty

My update is a couple of months late this year and now I am 7 years old. I’ve been looking after my human mum, she’s not been so good this year. I’m keeping my eye on her and snuggling up with her as much as possible. I’ve started to paw her like a cat to sit on her legs etc, it works every time. Who would have of known, I could act like a cat.

I’ve had some dodgy haircuts this year too, why is it so hard to produce the same cute hair cut. I’ve looked like a floor rug, someone clearly likes scissors and a sheep after shearing. The last cut has made my legs look longer and my body even shorter but not for the better. Paws crossed for a nice cut in 2018.

Guess what, we have moved again, this is now a permanent address, I think my human parents have a gypsy streak in them. I don’t know if I was coming or going. Finally I think they have settled down and I don’t have to deal with the previous neighbours cat crossing my garden. My current neighbours cat has more sense and avoids my garden, he knows my boundary line. However I do have a small human next door shouting doggie doggie, no!!! my name is Lottie.

The new home is cute, I don’t need a map like my Canadian home. Furthermore I don’t get the warm air heating like my Canadian home, its a metal panel fixed to the wall, I think the humans call it a rad. I did like warm air flowing through my fur, it was just like a permanent blow dry

Some of the items in this home verses the Canadian home, say for instance the shower in the U.K. is a like size of a laundry chute. Ridddddiculous. The bathroom hand basin is so small, an ideal size for a cats lick but not a deep filled bubble bath lol. My human parents are changing all those items and making great moves on creating a beautiful home.

Ive been to my human dads workplace on a few occasions and again I’m flooded with kisses and cuddles. They all want to take me home but there’s no way I’m leaving my human parents oh no. My human parents mean the world to me, nevertheless my human dad is still the soft touch in regards treats, let’s just say he’s putty in my paws every time.

I actually go to a dog sitters home when my human mum has medical appointments in London. My dog sitter is lovely and her human daughters and I’m showered with love and affection. The only problem is I won’t eat as I’m pining for my human parents. I know they are coming back for me but my anxiety gets the better of me. If only I could drink wine like humans, they always seem to be more chilled after a couple of sips.

I had better sign off now as I have to snuggle my human mum before she has another op this month. She’s a real superstar, you wouldn’t get me going under the knife 4 times just picking and chopping organs for dandelions(tumours). Them doctors keep dissecting her like a science lab class rat or a frog nowadays. She’s has scars like a patchwork doll but so so brave. I hope they take good care of her otherwise I will have to start sharping up my gnashers, enough said. (Disclaimer: I don’t condone violence)

Until next time and love to you all

Lottie. X ❤️🐾🐾

#letstalkaboutnets

Weekly Blog No 92 – Overview of 2016

It’s been a few weeks since I’ve written a blog due to ongoing health issues but here’s an overview for 2016.

UK 

Been back in the UK for over a year now, we’ve got back into the swing of life. I have to admit my heart is still in Canada but I’m glad to be back. I haven’t driven for a year due to my ongoing symptoms, a personal choice but you never lose the skill of driving. Things can be easier in the UK, shops can be reached by foot or local transport. Food shopping can be delivered to your home. Medication can be delivered to your home by pharmaceutical companies. Basically most items can be delivered to your home nowadays by a simple click.

Friends & Family

An enormous thank you to all the lovely people who have been there for me & Mr Zebrakat. Your kindness however small or big, blows my mind and please know that I am truly grateful. I know nowadays I’m not the most proactive friend but if you know me well enough, you know that I care but my illness limits me. Consequently relying on people visiting me if they want too. Thank you for those people who have made that effort, it always brings a smile to my face.

Lottie (dog)

Lottie has settled into her new house, she loves the garden and her local walks. Lottie has clearly adapted to moving and hopefully this will be her last move.

New Home

Well we did it, we bought a home in a lovely town in Northamptonshire. A beautiful town retaining local facilities in walkable distance, which is a rarity these days.  The house needs  some work to meet our standards but we will get there. The construction plans are being drafted to be tweaked. However I was able to have Christmas dinner here for family and it was a lovely day.

Health 

Well what can I say, as time goes by my symptoms seem to progress. Even though I have some symptoms under control, there are more and more creeping upon me. This year, there has definitely been more bad days than good and life without a cocktail of drugs would be unbearable. There has been days were my pain relief has gone out of sequence due to one thing and another, no person wants to live with that pain, it’s insufferable. Let’s hope in 2017 there will be more good days than bad.

Hobbies 

I was trying to concentrate on hobbies last year. Cooking skills are still improving and still learning to try different ingredients. Reading has been non stop, I do love historical fiction. I’ve tried out new authors this year and I will continue that.  A friend bought me an OK Magazine subscription, therefore I’m able to keep up with showbiz gossip. Music, there is not day that goes by without music, love love love music. I also did some online courses when I was well enough to occupy my mind.

Theatre & Movies

I’ve managed a couple of shows and a few films. Attendance is not at peak times and always needs to be planned in one way or another. Going to see a movie is always therapeutic,  it’s  like adding normality to your life.

Overall a successful year and I will look forward to 2017. Freedom is going to be my goal this year. I wish everyone a Happy Healthy New Year.

Weekly Blog No 63 – Overview of 2015 

 

This year has involved a lot of change in one way or another, some of it has been good and some of it not so good.

Births 

Two bundles of joy came into the world this year, a baby girl and a baby boy. Children bring such happiness to everyone and with Facebook nowadays you can see their continual development.

Bereavement

Death was on the agenda this year, losing loved ones is never easy. It’s one of those situations that is faced by everyone in life and can’t be avoided. Nothing prepares you for not having access to those people when they are gone, you continue life as if they are always going to be there. Memories is all you have and they can never be taken away.

Returning to the UK from Canada

Although it is wonderful to be home and close to friends & family, there are elements that I miss. I didn’t think I would miss snow but in a bizarre way I do and wonderful blue skies. I knew I would miss my friends, yet I didn’t realise how much. Thankfully nearly everyone has stayed in touch so too my Canadian friends a huge thank you.

On a funny note, I didn’t eat a whole load of chicken wings or hamburgers in Canada, strangely I still can’t face them. I’ve been back 6 months and the thought of them makes me feel nauseated.

Emotions

Not a person to get stressed and many people can vouch for me, I feel that I have packed years of being stress free into 6 months here. An international move or selling a house is less bothersome and that’s saying something. I just have to learn how to avoid tense situations, however it can be impossible sometimes when other people are involved.

Health

I’m thankful to be writing another overview, my 2nd since diagnosis. I do believe it’s down to a positive attitude and medical intervention. I am not 100% and can see a decline in my health in the last 12 months. Yes there has been some physical changes in appearance but people say I look no different. I have to agree with them to a certain degree and that’s the beauty of Carcinoid Cancer aka the good looking cancer.

I hope it’s not deterioration but just a case of my symptoms not controlled in a better way. I wish that I could live a life like other patients, who are able to work or travel. I do accept co-codamol (opiate) as a pain relief although I do find it unacceptable as a solution for GI issues in order to give me freedom. I don’t want to be addicted to narcotics just to get to a medical appointment, visit family or to a supermarket. Despite the fact I don’t agree with the treatment, I’m grateful for the freedom. Some days I feel so ill, therefore I am determined to change that and invest in people who are going to take care of me. Unfortunately I have a miss mash of care at the moment, which raises stress levels hence watch this space.

My husband J 

Can’t praise the man enough, there is one thing you wish for when you have an illness is undivided love & support. I have the love & support, therefore I just need the science. If I could manufacture him and give him to all people who are need of love & support I would.

As many of you know already, J worked as a construction professional leading major projects on an international airport in Canada . J is no longer working on an airport but is currently working on various projects big and small advising Architects, Engineers and Builders. This was also my professional role and even though I’m happy to hear about his working day it’s gut wrenching. I still agonise for work as strange as this may seem to some people. I do wonder if J misses the buzz of airport life like I miss employment.

Family & Friends

Since returning home I’ve been fortunate enough to have spent time with family and friends. It’s like I had never left in the first place. Just in the 6 months, I’ve laughed so much as banter is big in the UK. Memories are being made and let them continue.

Cooking 

My cooking skills are going from strength to strength and I feel that is down to having the time and  fabulous supply of wonderful ingredients in the UK.  My kitchen appliance of the year is my slow cooker, it’s my one pot stop lifesaver.

Books 

I love books and thanks to competitive shopping in the UK, books are cheap. I’ve already read a stash of books but I’m currently reading two at the minute, one on my phone and the other is a hardback book.

Music

I love listening to the endless radio stations in the UK, in Canada I would only listen to one. I’m in CD heaven again and now I look like a CD hoarder, the choice here is amazing. I’ve fulfilling my pastimes again since being back.

Overall Summary

I’m grateful to be here another year and to be able to enjoy both the good times and bad times. I shall look forward to 2016 with as much enthusiasm as 2015. Thank you to all the people who support me and Happy New Year.