Blog No 148 – Overview of 2019

Happy New Year Everyone.

January

Harrods

As I was recovering from surgery last year on a special birthday. My husband took me to London this year to be a tourist for a couple of days.

Thriller Live at Lyric Theatre

We experienced some amazing food, indulged in breakfast at Harrods, saw the Thriller Show and visited a couple of museums. We have spent so much time in London on medical visits and never participate in tourist delights.

February

Hamish Being Cheeky

Hamish is a year old this month. Its hard to believe my ginger tom has been with us nearly a year. He’s so content with us and Lottie. He loves to hide behind walls or furniture to jump out on Lottie and then the big paw comes out. There is other times when they are kissing each other. The photo above, I found him in my hand basin, he’s never done that before. The photo below is the love they feel for each other.

Hamish & Lottie Kissing

March

RIP Auntie M

I lost an Aunt this month who was going to be 90 later in the year. She was an amazing woman, who had an interesting life. She was born In Ireland but spent most of her life in the U.K. She was 1 of 8 siblings and had 5 children in her family.

It was her time to leave us and to be reunited with her closest sister Auntie N. I’m sure they had a lot to discuss over a nice cup tea and a slice of cake. RIP Auntie M.

April

Main Bedroom Art & Lighting

The house renovations are starting to take shape. We provided a beautiful sized bathroom. Created a walk in wardrobe for our clothes etc. Additional storage for books etc in the hall.

Mr Zebrakat’s Section of Wardrobe.

The photo is only a small section of the wardrobe, it’s actually 4m long. I designed the wardrobe and Mr Zebrakat & my brother built it.

Plastered Walls

We are currently snagging the loft room(Office), 2 bedrooms and the bathroom on the first floor before making big changes on the ground floor. We have achieve a lot already, ripping the house up to its bear bones. Let 2020 make the ground floor spectacular.

Bookcase Built Under The Stairs

May

Stratford Upon Avon, Warwickshire

This was a fantastic month because I met fellow cancer friends K & H and their husbands. We decided to meet centrally due to my problems, therefore we met in Stratford Upon Avon, Warwickshire.

Stratford Upon Avon, Warwickshire

It was an exceptional weekend with excellent food and good company. We intend to do something again this year but H and I are currently having PRRT treatment. I will blog and update over the next couple of days.

June

Trevi Fountains

Ciao a tutti

We were in Rome this month for the first time in our lives. OMG everyone should go. You have everything in this city, weather, food, architecture and history.

Street Scene

We were going to surprise our American friends who are like family. They are two very amazing people with big hearts. We gelled with each other as soon as we met. The surprise was priceless and a memory we will remember for ever.

Spectacular Views

July

Test Results

This was the month of hospital appointments and visits. Pain was revealing itself in various locations of body. My spine was even getting in on the act but I will blog about that separately.

August

Kino Lounge

We went into Kettering, Northants one day and found this amazing restaurant that serves great food. The building interior is so amazing with the perfect ambience. It’s very laid back and has a mixed demographic.

September

Lottie become 9 years old, it’s hard to believe to be honest. She’s more clingy than ever. I also feel she knows when tumours are having the time of their life inside my body. She tends to sit on the exact spot. She’s such an intelligent dog and I can’t fault her. She’s honestly helped me through my illness.

October

Fruit & Vegetables

As I’ve been struggling with symptoms, I’ve decided to go vegan. I do have an allergy to cows milk anyway so 70% of the time I been having alternative dairy products anyway. Mr Zebrakat & I both started together then someone said to watch Game Changers on Netflix. Although I had made the decision to become vegan prior to the programme. The programme definitely opens up your mind.

However being vegan definitely makes me avoid cows milk in products. I feel we have both benefited from the change of diet. Not only does it have an impact on our health, we feel we are contributing to animals and the environment.

There is so many supermarkets doing vegan or plant based food to substitute meat/fish products. Restaurants nowadays are providing vegan menus with fabulous choices. I personally don’t miss meat etc and feel that I’m making a small contribution to animals and the environment including my health.

November

Jess & Ryan

This month we went to a stunning wedding in Cheshire. J the bride is the daughter of my best friend. I have known J since she was a small child and she’s grown into a beautiful woman & caring mother. We never expected to go to her wedding and we feel completely honoured to be invited. It was a stunning day and a wedding never to be forgot. J married the handsome R, her soulmate and I’m sure they will be happy forever. Congratulations to you both ❤️

December

Is about to start, yeahhhh

Following a recent scan and some tests results, My Net Consultant telephones me and informs me that I’m about to embark on PRRT treatment in February 2020. I will blog about this separately.

Blog No 147 – Cancer Update

Cancer Update.

So I’ve been a bit quiet for a while, here’s why. I was having a hell of a time dealing with symptoms from my cancer treatment (butt dart). Back in end of April we decided to stop the cancer treatment to see if my symptoms would improve. Overall they have to be honest giving me a better daily quality of life. Nevertheless it’s not perfect, as my pain is now emphasised more. On top of that I’m dealing with spine pain and nerve pain. I have good and bad days. Not withstanding the above, there is more bad than good days. Thank god Mr Zebrakat, married me in sickness and health. 😅

Last Monday, I seen my Oncologist who informed me that although I’m stable. I have cancer in my stomach & pelvic areas, liver and peritoneal. Also my spine is lighting up on the scanner but my Spine Consultant already suggested he felt this was the case prior to any cancer scan.

The way forward is continue to stay off the cancer treatment. It was a decision that I tortured myself over before the appointments. A case of what ifs. More blood and urine tests and rescan end Feb beginning of March. In the meantime, I have my other Consultant appointments to attend. Since writing this update, I’ve received a sneaky scan to be done next month.

Life goes on, I’m not on social media as much, I’m trying to do bits around the house, still reading, resting more because of symptoms and I need to get back to my blog. X

Love to you all. ❤️

Blog No 145 – Wedding Anniversary

Yesterday we celebrated our wedding anniversary. Another year has passed, yet it only seems 5 minutes ago we got married. It was such a perfect day we celebrated with family and friends.

We’ve done so much in our married life, I hope there is room for more adventures to come. Mr Zebrakat told me last night, wouldn’t it have been good, if I had taken you back to our honeymoon destinations. He said he was going to hand me flight tickets to Miami and then on to the Bahamas. I would have been shocked but it wouldn’t be the first time he had surprised me with a trip. I just remember the heat in Miami this time of the year was unbelievable temperatures. How I would kill right now for a blue sea, an ocean breeze and sand in my flip flops.

Instead my sister in law invigorated me with coffee aroma and sweet bakes. Basically speciality coffees, plain scones with butter and jam preserve. The last couple of days especially Tuesday, I was so ill, I feel like I’m starting to get a bowel blockage again as I have the typical symptoms. Them dam pesky tumours won’t leave me alone, they are always wanting a nibble of my fine dining.

Mr Zebrakat gave me a beautiful bouquet in our wedding theme colours and took me to a local Italian restaurant. We both started with drinks as neither of us wanted a starter. Our main course choice was the same.

Beef Involtini Stuffed with Parma Ham, Pine Nuts & Basil in a Rich Tomato Sauce with Linguine & Garlic Buttered Green Beans

And for dessert, the top plate is Rhubarb and Custard Semifreddo with Poached Rhubarb and Pistachio Cream

The bottom plate dessert is Elderflower Infused Panna Cotta with Raspberries & White Chocolate Crumble and Peach Syrup.

The meal was excellent. A very quaint restaurant in the town and even though it was a Wednesday night the restaurant was fully booked and they had to turn people away.

Mr Zebrakat thank you, thank you for absolutely everything you do for me. You are an amazing individual with the kindest heart and I couldn’t wish for a more dedicated husband. Happy Anniversary ❤️ Now leave me alone to continue dreaming about blue seas……..

Weekly Blog No 140 -Update

I shouldn’t be calling my blog a weekly blog nowadays, as clearly its been some time since my last blog. I do love writing them but I don’t want my blogs to be just about medical stuff. It’s hard not too, when your life is medicalLy focused. This blog is going to be medical but the next one will be non medical. Keep your eyes peeled.

Let’s get the medical update out the way. Since the beginning of the year till the end of March, I’ve had approximately 35 medical appointments and approximately 10 of them have been scans.

I’ve been having ongoing issues that require continual Specialist input. I’m under 3 hospitals but I’ve been scanned at 6 medical facilities in 3 different county’s of the U.K. one of them being in London. My appointments are tiresome and travelling can be very demanding. I’m currently under the following Specialists Oncologist(Net Specialist), Neurologist, Spine Specialist, Endocrinologist, Cardiologist and Neuropsychologist. Is there any gist that I’ve left out? maybe not. Subsequently you can see that my life is a balancing act of symptoms and appointments.

There was some concern recently that carcinoid syndrome had affected my heart. Therefore, I’ve been undergoing various tests and I’m glad to report my heart is good. Yeah high five to a healthy organ. On the other hand, my high blood pressure is currently out of control. Even my existing medication wasn’t resolving the issue. Therefore the Cardiologist has introduced a third medication to reduce the numbers. I’ve yet to see if the numbers have been reduced. My suspicions is my blood pressure won’t reduce with the assistance of additional medication. I believe it’s tumour activity as from my previous experience it spikes my blood pressure. I willing to accept that I was wrong if it does work and reduce the numbers considerably.

Furthermore I need to buy a T-shirt with the following words ” I don’t suffer from white coat syndrome’. When you attend a hospital appointment, the nurse takes your blood pressure and quote on the T-shirt may save me from repeating myself explaining what the underlying cause is. I hate assumptions, as too many people make them everyday.

The Spine Specialist is still under the impression that I have cancer on the spine, however he’s going to monitor the progress. I have a lot of spine pain and sciatica down both legs. Next week I’m having nerve block injections again. Should the injections not work, I will be going under the knife again. If I do end up having another spine op, he will be doing a biopsy on the spine.

Endocrinologist, I have to say this Doctor was not only very approachable but very funny too. I was very impressed with his knowledge of my medical history. His waiting list for appointments is 10 months but he’s going to see me again in 3 months for results. My thyroid is not corrected itself with medication. He’s upped my medication to 300mg, which is very high. It doesn’t appear that I’m absorbing my medication. Light bulb moment, didn’t I say that nearly 2 years ago to my medical team. Ummmmm. The Endocrinologist is proposing a T3 treatment but I will have to explore this option more.

The Neurologist is happy that the migraines are better controlled by an increase of medication. I really didn’t fancy an injection in the head.

The Net Specialist had ordered additional bloods and scans, which I’ve done and he will update me going forward with treatment at the end of the month.

Neurophysiologist will be doing nerve testing at the end of the month due to issues that have become apparent in the last couple of months. There’s no obvious reason for damage to my thoracic nerve either. Let’s hope the Neurophysiologist can shed some light.

There’s never a dull moment in my life, yet I continue life like there’s nothing wrong. I’m not going to deny it’s not easy some days but I’m not going to dwell on them either. There’s a saying “strength does not come from winning”.

Weekly Blog No 139 – My Birthday

Copyright © 2019 Zebrakat

I’m falling behind again in my blogs due to symptoms. However I’ve made another birthday, how amazing is that. I have currently reached 5 birthdays since diagnosis, what an achievement.

Last year my birthday was post op, Mr Zebrakat decided to make my birthday this year a little bit more special. He had organised a weekend in London. Although it’s quiet difficult for me, I was up for the challenge. Who doesn’t like a change of environment and to feel normal again.

We stayed in a beautiful hotel in South Kensington adjacent to the museums. The hotel treated us like VIP guests. They also left me a bottle of claret, a gift box of spa products and a nicely handwritten card from the Hotel Manager. The hotel decor was stunning, the cleanliness was immaculate and the customer service was impeccable.

We went to V & A Museum, there is no way you could view all the exhibits in a day. The venue has 145 galleries, therefore an incredible amount of exhibits. From architecture, furniture to sculpture. Well worth a visit and a walk through history.

Copyright © 2019 Zebrakat

On my birthday we went to see a West End show called “Thriller”. A spectacular show of Michael Jackson hits. The resemblance of MJ was unbelievable. The hits just kept coming and coming. The dancing phenomenal throughout the show.

Copyright © 2019 Zebrakat

We also visited the Imperial War Museum, Lambert, an insight of war history. The museum exhibits WWI, WW2, The Cold War and the Holocaust and much more. I’m not sure if the Holocaust exhibit is a permanent exhibition but its anniversary is on my birthday, which I will never forget.

Copyright © 2019 Zebrakat

Copyright © 2019 Zebrakat
Copyright © 2019 Zebrakat
Copyright © 2019 Zebrakat

Copyright © 2019 Zebrakat

One lesson that I had learned from Canada was we don’t explore our own country enough. In my past life, any opportunity for a break away from work. I would jump on a aeroplane and leave the country for sunshine & culture. Clearly forgetting that there is so much to see in the U.K. Canadians are fantastic at exploring their own country. I’m starting to realise now the U.K. has a lot to offer but it’s not always cheap. You need to shop around and grab online deals when you see them. It’s unbelievable that a city break in Europe is sometimes cheaper than a weekend in the U.K.

On our final day, we went to Harrods for breakfast. What a wonderful experience that was, the service was errorless. The food was of the highest quality, served on china. The tea set was silverware. The ambience of the room was art deco with background music of the rat pack. A divine experience on how the other half live.

Copyright © 2019 Zebrakat

Thank you, thank you, thank you to all my family & friends for cards, gifts, balloons and flowers.

To my awesome husband, for making memories, treating me like a queen and always putting me first in life. You are one of kind and I won’t let you forget that.

Love to you all.

Weekly Blog No 136 – Annual Reading List

My goal for 2018 was to read more than 24 books. My reading this year has been hit and miss. I know I did a count in September and it was 21 books and I thought this was going to be an easy target to achieve with an average of 2 books a month. I was very much mistaken because it remained at 21 books, therefore I didn’t reach my target.

Here is my reading list: –

  1. Flesh and Blood – Stephen McGann
  2. A Little Leaving – Anne Bennett
  3. The Liverpool Rose – Katie Flynn
  4. Me Life Story – Scarlett Moffat
  5. The River Maid – Dilly Court
  6. Fear of the Collar – Patrick Touher
  7. Mothering Sunday – Rosie Goodwin
  8. A Daughter Courage – Kitty Neale
  9. The Soldiers Daughter – Rosie Goodwin
  10. An Orphans Secret – Maggie Hope
  11. Mill Girls – Tracey Johnson
  12. Dancing in the Dark – Maureen Lee
  13. Pie N Mash & Prefabs – Norman Jacobs
  14. The Report – Jessica Francis Kane
  15. A view Across the Mersey – Anne Baker
  16. The Summer Maiden – Dilly Court
  17. A Promise Between Friends – Carol Rivers
  18. Stories of the Law and How It’s Broken – The Secret Barrister
  19. No Silver Spoon – Katie Flynn
  20. A Christmas Candle – Katie Flynn
  21. First Man in Leading the Front – Ant Middleton

A few new authors this year and the Stories of the Law and How it’s Broken by The Secret Barrister was a very educational book into the legal system in the U.K.

A book that very educational was Flesh and Blood by Stephen McGann. A very informative book on family and medical history through the decades/centuries in Ireland and U.K. I do love to hear about people’s family history and even better if I get educated on the way. Worth a read.

As for the First Man in the Leading the Front by Ant Middleton. I think this man is misjudged by his size and chosen career. I wouldn’t make assumptions and read this book.

The most horrific book I read this year was Fear of the Collar by Patrick Touher. The cruelty to innocent children was unbelievable and was well worth the read. The eye opener.

In 2019, I will aim to read 24 books again. I will have too as my house is full of books and I need to de clutter. Let’s see how this year goes. Happy Reading.


Does anyone have any book recommendations?

 

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 ❤️

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 131 – Cancer Friendships

Copyright ZebraKat 2018

When you start researching the disease, you start to develop friendships with people who have been diagnosed with Carcinoid Cancer around the same time as you. They’re also learning the implications of living with rare disease, therefore you start to gather knowledge from each other. Even though you can live miles apart, there is a special bond that is hard to describe. You share information and support each other through thick and thin. You’ve formed a friendship like a pen pal or should I say a cyber pal. The friendship can progress to private messages, cards or even telephone calls. Through illness we unite and friendship blossoms.

Nothing prepares you for when they die. You feel the heartache that their family and friends are going through. Nevertheless you feel a sense of loss, a friend who has travelled your journey with you. Furthermore there is a niggling thought in your head at each passing. Is your time on this earth coming to an end soon. I don’t think that there, isn’t one person on this journey who doesn’t have the same thoughts.

This year, I have witnessed a lot of friends who have departed to hopefully a symptom free resting place. I have many friends who continue to travel my journey with me. I would like to personally thank you for your continuous support. There has been many friends that I haven’t been able to thank personally, because it was too late.

Make sure you thank your cyber pals, let them all know you are grateful for their support and guidance. To all my cancer friends that have passed, you will be forever in my thoughts. ❤️