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 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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Weekly Blog No 108 – Cancer Update 


Cancer Update.
Last week I seen the surgeon in London and he further agrees that I need surgery. The goal is another bowel resection and ovary removal. If he feels a resection is not viable then an external bag is the only option. The surgery is mid Nov because we are trying to get my blood pressure under control. (Cancer related) I did scare them a little with a heart rate 115 and repeat readings not much different. He then sent me to pre admission today to avoid additional travel.

 I think I had a full M. O.T. including swabs, bloods, ecg etc etc. Once the nurses had finished I was sent to the anaesthetist who was also very lovely and fully aware of the problems my cancer has caused. Therefore as an extra precaution I will go in a day early for special meds and after surgery I will go into a high dependency unit or icu for at least 24 hrs. Overall it was a successful day.
Roll on operation freedom. 🤞<<<<
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Weekly Blog No 93 – It’s My Birthday

 

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I’m happy to report I’ve made another birthday and I’m still in my 40’s. When you are informed by a doctor that you have cancer you certainly don’t anticipate celebrating many birthdays in the near future. This is in fact my 4th birthday since diagnosis, however my Oncologist did inform me in 2014, I have about 3 yrs to live so if his prediction is correct this is my last birthday. I can assure you im not treating this as my last birthday

My intention was to get some of my friends together for coffee and cake but I’ve not been so good lately, which is a shame as I do love, a girlie get together.

I was showered with cards and gifts from family and friends. I literally got everything  I needed and Zebrakat favorites. I have a stash of reading material. Some new authors and bibliographies to open my mind up to other people’s lives. Some music to pass the time away whilst doing chores. I shall smell beautiful from all the products that I received.  I can indulge in some online shopping too, the gifts were endless. Thank you to all those people who showered me with gifts.

My birthdays are not exactly celebrated like I used too. I have even been known in the past to be in some exotic location on my birthday consuming cocktails. I will continue to make the best of every birthday where ever I am, that’s for sure. ❤