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”.

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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 137 – 8 Paws

If you are a regular reader of my blog you will know that I’m the proud owner of 8 paws. Lottie is my cute 8 year old morkie dog from Canada and Hamish an 11 month old ginger tom cat aka Frank the tank from the U.K.

Overall Lottie and Hamish get on really well. They greet each other in the morning with a kiss. They will run out and in from the garden together. They are very content to sleep next to each other on the sofa. They know their own pet dishes.

Individually they have their own personalities. Lottie will look at me from the kitchen if she wants to go to the toilet. If I’m upstairs she will come up and give me the look that she wants to go out for a toilet break. Hamish will meow to tell me when he wants to go for a toilet break even though he has a litter tray. Hamish will then stand on his two rear paws against the back door. Both pets understand the word treat and will run to the treat cupboard door on command. Hamish will chase a paper ball and bring it back to you to throw again. Insomuch as Lottie won’t chase a ball at all. Hamish likes toys, whereas Lottie doesn’t. Lottie loves snuggles from strangers but Hamish will run away, however he will take snuggles from Mr Zebrakat & I.

Lottie is very much a chilled out dog and is very happy to watch Hamish’s antics. However there are occasions when Lottie doesn’t realise that Hamish is still a kitten. Hamish will pounce on Lottie or try to box her ears with his paws. That’s why Hamish got his nickname, Frank the Tank. Lottie can be innocently behind a door and Hamish will try and paw box Lottie through the opening.

They are both a joy to have and we would be lost without them. X

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 135 – Overview of 2018

 
Overview of 2018

Wow what a year, it’s been. I started the new year recovering from post op with an open scar. I had high hopes that I brought myself more time but that wasn’t to be the case. The cancer was very determined to grow and cause me ongoing symptoms. I took the stance then, that I was going to attempt to do things before I couldn’t do them anymore. Here’s an overview of 2018.  

January – Birthday Celebrations

In January I turned 49 and 4 quarters, it was an amazing birthday. I was lucky to be showered with flowers, gifts and cards and so overwhelmed by people’s kindness. The love shown to me was outstanding and still to this day, it blows my mind.

February – Scan-a-thon

February was the month that my scans started again and have remained  continuous throughout the year. It was also the month that my new bathroom was taking shape to the point I was able to use the facilities. I was no longer feeling I was showering in a telephone box unable to stretch out my arms. 

 
March – Sailing the Seas
 
March was my delayed birthday trip from Mr Zebrakat. A week on a Mediterranean cruise. It was lovely to have a week away  to relax. It was pretty much house arrest on the ship due to symptoms and of course I forgot some of my medication.  Never in my life, will I ever forgot to take all my medication again. Lesson learned for life. 
 
 
April – Welcome Hamish
 
As many of you know, we got another 4 paws to join the family. Hamish is a ginger tom cat aka Frank the Tank. He’s is still only just over 10 months old and he’s huge. He’s a great addition to the family. 
 
 
May  – Royal Wedding/Oxford
 
May was an exciting time in the U.K, as everyone was so hyped up for the Royal Wedding of Prince Harry & Meghan, the Duke & Duchess of Sussex. I remember the day very well as I had to travel to London for another scan. The roads were so clear as everyone seemed to be glued to the television watching the build up to the wedding. Meghan looked stunning and they looked so in love.  
 
We visited Oxford during the Royal Wedding. Oxford nicknamed it the ‘City of Dreaming Spires’. A city known for a prestigious university made up of 38 colleges. Honey coloured buildings of stunning architecture. A beautiful city and well worth another visit sometime. 
 
 
June – London is Calling
 
We went to London as Mr Zebrakat was attending an award ceremony to receive is fellowship membership. The ceremony was in a beautiful building and the event was exquisite. I’m so proud of Mr Zebrakat in everything he does and achieves. 
We took a quick ride on the DLR to Greenwich. Another hidden gem of prettiness and such a glorious day too. 
 
July – Renovations
 
The renovations have continued and the house is starting to take shape. The loft space, study area and store on the 2nd floor is ready for painting. The 1st floor, bathroom is complete minus a touch up of paint.  The master bedroom and walk in wardrobe is complete but we have to find our extra clothes, shoes and bags from storage. The linen cupboard shelving is nearly complete.  
 
 
Aug – Off to Weegie Land/Glasgow
 
We flew to Glasgow for a couple of days it was important for me to go with Mr Zebrakat to see places that where emphasis in his family tree. It was good for him to show me were he lived, went to school etc. We have previously been to Glasgow but it usually involves visiting people not this time. This trip was about him and for me to take things at my pace due to my difficulties. We had such a lovely time as it was 10 yrs since our last visit. 
 
 
 
Sept – Ibiza Sunshine
 
I don’t have a bucket list and I don’t want one either. I don’t feel the need to put pressure on myself to do things before I go. All I do know, is even though its hard for me to do things now, I need to push myself now before I can’t do it at all. 
 
I’ve had a lot of appointments etc and we decided to get some rest in the sun. Who doesn’t need some sunshine in paradise. I’ve never been to Ibiza and it was only a couple of hours flight so perfect for a mini vacation. 
 
I didn’t forget my medication this time and enjoy my days sitting at the poolside absorbing some vitamin d. I was all ready to begin scans the following week.  
 
October – Additional Storage 
 
I wanted to design some more storage and a bookcase in the area under the stairs. Who doesn’t have enough of storage for specific items. I have a lot of books and thought this area would be good for my paperbacks. I want to keep specific books by favourite authors but I’m also good at giving books to friends & family. I need to paint the bookcase etc but we haven’t chosen a colour scheme for the hall as yet. 
 
 
November – Petting Farm 
 
My niece had a sleepover so we took her to a local petting farm. I don’t know who was more excited me or her lol. I did love stroking and feeding the animals. Seeing my niece getting excited and Mr Zebrakat teaching her how to stroke animals. These are precious moments and it’s times like this, you do wonder how many more precious moments I will  have. 
 
 
December – Cardiff Christmas Market 
 
Mr Zebrakat and I took a trip to Cardiff before my spine appointment. There was a Christmas market on and we met up with friends who live in Wales. What a beautiful place Cardiff is, and the people are very friendly. We did an open bus tour, which is an excellent way to see key points of interest in the city. I would definitely return to this lovely place and beyond. 
 
 

 

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 ❤️