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.

Advertisements

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 128 – Cancer Update

Cancer Update written Thursday 21st June 2018

Today I was prepared to discuss either chemo or PRRT as a treatment plan. Subsequently we did discuss them both and here is the outcome. The chemo, he felt was not suitable for me due to the side effects on my body. I think I had actually come to the conclusion already and had mentioned it to a few friends. The PRRT treatment, he is not going to proceed with this treatment at this time.

Even though the CT scan didn’t show up the Pet scan findings, the MRI did. There is multi tumours on the liver and disease in various places of my pelvic region. On my last appointment, the Consultant took various bloods and informed me today that he was concerned with the results. My liver function bloods have been rising since my last op. My GP highlighted the issue back in January, however everyone thought the cause was my recent op. Yet the results continue to rise making the results questionable. There is some other bloods that are troubling him too, for instance my thyroid. As I wasn’t under an ENT Consultant for my thyroid, he phoned someone in-house to seek advice and it was decided to increase my dosage of thyroid meds. There’s a lot of ambiguous results and he is determined to get to the bottom of the mystery.

Today he’s taken another 7/8 tubes of blood. If he is not satisfied with the results, he is going to organise a liver biopsy to see what is going on. I nearly fell of my chair because I had one in Canada prior to my liver resection op. I was very awake watching him do the procedure. The pain after the procedure was so horrendous that the doctors had to give me some powerful drugs. The Consultant did inform me that the team in London are very good so not to worry.

Follow up, he has organised another scan for 4 months instead of the usual 6 months. He wants to monitor me more closely. I should be ecstatic with the news of no treatment at this moment in time but i have a mixed bag of emotions. I’m happy that there is no treatment but sad at the same time, as no further treatment means no improvement in quality of life.

There’s no light at the end of tunnel but I’m still chasing the light.

Love to you all ❤️

Weekly Blog No 127 – My Life Continues

Once upon a time, there was a girl called Kat who dreamed of travelling the world but she was stuck down with a disease called cancer. How her life changed……

No one can prepare you for life with cancer, it’s an ongoing assault course. I don’t want pity but everyday its a challenge. It’s wasted energy, which I would have preferred to use in my career. Cancer was not my chosen career, however it is a full time job of manoeuvring through symptoms, medication, side effects, appointments and procedures.

My last blog, I did mention there may be more tests between appointments. Subsequently there was, I even had some scans last Sunday, ready for my Oncologist next week. Hopefully he will have a treatment plan, which may involve a clinical trial with PRRT. As soon as I’ve been to the appointment, I will update you within a couple of days.

I’ve also been to see my Neurologist, who would still like to stick a needle in my head. I’ve chosen the less invasive action of increasing my medication for migraines. Sometimes the medication is not so effective that the only solution is a drink of Coke or Pepsi. Don’t ask me why it works but it does.

Let’s move on to more happier events in life. Mr Zebrakat has been awarded a Fellow in the construction industry. There was an award ceremony in London and I couldn’t be more prouder of him. He deserves the acknowledgement for his contribution to the construction industry

Whilst in London, we went to the London Docklands Museum. I will do a separate blog for that visit.

Although going out is a challenge, Mr Zebrakat & I have adapted to my needs. Only now, did I had realise what precautions we actually take to make travel more accessible for me. It’s become the norm for us but there is a degree of planning & organisation. You learn to adapt very quickly and I’m sure it’s the same for any illness.

The story continues……….

Weekly Blog No 126 – Cancer Update

This was my Facebook update for family and friends.

Unfortunately I’ve been a little quiet recently as I’ve been suffering with abdomen pain and a suspected partial bowel obstruction. I had a Pet Scan beginning of May, it was first one since last year. I did have a couple of CT scans in Feb, which revealed cancer in the abdomen. Well yesterday I went to the RF to discuss my current problems and the results from the Pet Scan. Although it was a great appointment with my Oncologist, he did kindly tell me “I was a complicated case”, my reply was “I did tell you I wasn’t straightforward”.

Now Im going to tell you the findings from the Pet Scan, I have cancer in the abdomen in various places, however there is something of concern on the left side were I have intense pain. Furthermore, I have additional cancer spread on the liver. Subsequently I will have CT’s to the thorax, abdomen, pelvis and liver in the next couple of days. The Oncologist will have a multi discipline team meeting to discuss my case. I may have to have additional tests before I see him again mid June. The proposal is a tablet form of chemo therapy or a clinical trial of Peptide Receptor Radionuclide Therapy. This will be discussed in more detail, once he sees me again and I will explain it more to you.

My thoughts: Something has to done about the continuous progression, I do find that I’m constantly saying that I have progression to you all in my updates, however the fight goes on. Obviously my 4th surgery last Nov didn’t buy me time like I initially thought, hey ho there you go. If I have this chemo, there’s some nasty side effects that I don’t want to experience and PRRT is the last resort treatment for my cancer. However PRRT can slow down progression so its definitely a bonus. I will keep doing what I’ve been doing and that is trying to enjoy life. Life is so precious.

Sorry I haven’t done personal messages but there’s too many people to do and easier this way. 😍

Love to you all. ❤️