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. 
 
 

 

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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 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 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 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. ❤️

Weekly Blog No 112 – Overview of 2017

It’s been a few weeks since my last blog, due to me recovering from my surgery. I thought I would count how many blogs that I did last year and the result was only 20 blogs out of potential 52.

My health evidently had an impact on me posting blogs this year. I will endeavour to improve that number next year, even if it is just by one. On a positive note, my followers have increased in numbers and since commencing my blog in 2014, the number of views is approximately 12k. Woohoo.

Friends & Family

Thank you to friends and family for your continuous support. I have a huge amount of respect for people that consistently care and support Mr Zebrakat and I. Honestly from the bottom of my heart, thank you so much for everything. Specifically all the people who sent cards, flowers, plants, mags, chocs & sweets, biscuits and messages.

I have to be honest though and say there is a few people on my radar who haven’t fully supported me and that does shock me. In my eyes that can’t be justified why but maybe in their eyes they can, who knows. I’m certainly not going to invest anymore time wondering why.

Lottie (Dog)

She has settled into her new home and loves the garden. Just like in Canada, she likes to sit in the garden facing the sun catching the rays.

She has adapted so well with all the changes we have put her through including the construction on the house.

Thanks to K who looks after Lottie when I’m on appointments etc. Knowing your pet is in good hands is very reassuring and I have gained a coffee buddy too.

New Home

We been here for a year now and the changes to the property are progressing. New windows, stone window cills, shutter blinds, roof lights, guttering & downpipes, new brickwork, forming a new bathroom, knocking walls down, new stairs to loft, chimney removed, new fireplace, loft conversion etc.

The list is endless and I have to thank Mr zebrakat, my brother and nephew for their hard work. Your help to reach our goals has been invaluable and is really appreciated by both of us. Obviously various trades have done certain things but they moderately have been done by family.

Health

I’m sure most of you have read Weekly Blog No 111 – Post Op Update. I’m now 6 weeks post surgery and doing ok. My wound is still being dressed daily by the district nurses and has a little way to go. I’m no longer in pain, nevertheless I am still contending with symptoms that are relentless. No medication at this moment in time is helping but hopefully that will change.

I still haven’t received my post op follow up appointment but my Net Cancer team are chasing it for me. I will have scans again just before the beginning of February before seeing my Net Cancer Consultant. Mr Zebrakat and I have a lot of questions for that appointment but I’m unsure if we will get satisfactory answers.

Despite the endless scans this year, I don’t have complete faith in them. I will continue to listen to my body, which has consistently given me warnings of tumour activity. I think 4 times on the surgical table makes me an expert in some respects. I definitely feel a lot lighter having less organs. Hopefully this coming year is going to be a more healthy year with less issues.

Hobbies

Well, I did have a successful year gardening. My first year of sowing seeds and planting cuttings did indeed produce various fruits and vegetables. I will attempt sow directly into my vegetable boxes next year to see if I am as successful with my crops.

My reading of books hasn’t stopped but I have been completing books at a much slower pace this year. This year I’ve been lucky enough to be in contact with a couple of authors whose books I read. I’m always amazed how they produce such wonderful work with an outstanding imagination. Were would we be without books.

Travel is on the cards next year and optimistically my health won’t prevent me from reaching those goals.

Theatre visits is a must, there is a couple of big shows in London I want to see. Who doesn’t love a musical.

Overview

This year has been quiet challenging, nevertheless I’m still here to tell the tale. I’m so grateful to the surgeon for making me pain-free and possibly extended my life a little. I’ve learned new skills in the garden and been covered in the bottomless pit of dust through building work. I’ve spent quality time with people I love. Furthermore Mr Zebrakat wins the award for husband of the year for his love and dedication as always.

Happy New Year Everyone.

Love to you all. ❤️<<
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