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.

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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 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. ❤️

Weekly Blog No 119 – Cancer Update

Cancer Update

Yesterday I went to London, to see my Net Consultant(Oncologist). My Consultant was being a host for two Consultants from another country. Therefore even though he asked my permission, which I agreed, the meeting didn’t go as I initially predicted. In principal, I did envision the responses to some of my questions. It was a very weird meeting in some respects as my Consultant was going in one direction but I wanted him to take another direction. My quizzical mind needed answers to my enigma.

He did advise me that they had debunked my body of tumours but I’m not tumour free. My liver is giving me a run for my money at the moment, which I believe to be tumour pain. The reason I can say this is, as a result of liver pain before I had a liver resection op, which involved removing tumours.

I had a recent local CT scan, which was totally useless as the Radiologist appeared to be blindfolded when viewing the scan to report. Therefore I’m going back to London for Ga68 Pet Scan for a better prospective. I had a series of bloods, some new meds and I will be back to see him again at the end of April. I shall look forward to seeing the results but as we all know, not all my tumours have shown up on any of the previous scans.

In the meantime, life goes on and I will continue to be proactive. I do believe the latest surgery has bought me time and I’m so grateful for that. ❤️