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 ❤️

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Weekly Blog No 133 – Merry Christmas.

Merry Christmas Everyone.

I will be blogging over the next week including a medical update.

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 131 – Cancer Friendships

Copyright ZebraKat 2018

When you start researching the disease, you start to develop friendships with people who have been diagnosed with Carcinoid Cancer around the same time as you. They’re also learning the implications of living with rare disease, therefore you start to gather knowledge from each other. Even though you can live miles apart, there is a special bond that is hard to describe. You share information and support each other through thick and thin. You’ve formed a friendship like a pen pal or should I say a cyber pal. The friendship can progress to private messages, cards or even telephone calls. Through illness we unite and friendship blossoms.

Nothing prepares you for when they die. You feel the heartache that their family and friends are going through. Nevertheless you feel a sense of loss, a friend who has travelled your journey with you. Furthermore there is a niggling thought in your head at each passing. Is your time on this earth coming to an end soon. I don’t think that there, isn’t one person on this journey who doesn’t have the same thoughts.

This year, I have witnessed a lot of friends who have departed to hopefully a symptom free resting place. I have many friends who continue to travel my journey with me. I would like to personally thank you for your continuous support. There has been many friends that I haven’t been able to thank personally, because it was too late.

Make sure you thank your cyber pals, let them all know you are grateful for their support and guidance. To all my cancer friends that have passed, you will be forever in my thoughts. ❤️

Weekly Blog No 130 – Hamish

Well I’ve been with my new human parents and Lottie, my 4 paw sibling for 4 months. I’m now fast approaching 6 months old. Gosh that went quick.

I’ve grown up as you can see, I’m going to be a big tom cat with mighty fine whiskers. My hair is a beautiful thick coat and to touch is like an expensive carpet. My eyes are no longer topaz blue but a sage green. My little peas were done at 16 weeks on the advice of the vet with no complications. I have a microchip and all the annual injections required. I’m on top of my game.

I love my nosh and my human parents are great at feeding me. I will on occasions attempt to rob Lottie of her dried food, which I guess is like eating chocolate to humans. You can’t leave it alone because it’s addictive. My humans parents are on top of that one.

I am fascinated with playing fetch with a ball. I should say it’s a paper ball and I will flick it around with my paw. I can entertain myself with Lottie’s toys too as she doesn’t play really, she likes to snuggle and cuddle all the time.

I like to jump out on Lottie or try and swipe her with my paw. She doesn’t get my playing at all. I will greet her with an Eskimo kiss in the morning when she comes down stairs.

I have been a little naughty at times, I’ve ate through the telephone cable. I will jump behind the tv and try to chew the cables. I have been found in the handbasin in the toilet/washroom trying to get water out the tap. I ripped up my human mums flowers that are in a vase. I’ve flicked off ornaments whilst sitting on shelves. I will flick any pen or pencil within reach. Ain’t I just a bundle of entertainment. I do keep hearing my human mum say “it’s like watching a 2 yr old and he will grow out of it”.

I will venture into the garden like its an obstacle course. I will nip into next doors garden as there is a 3 yr old who loves me and tries to feed me pizza. However I haven’t yet ventured beyond that.

I am super relaxed in my new home. My human parents and my 4 paw sibling Lottie are purrfect.

Weekly Blog No 129 – Mary Berry’s Fruit Scones

Photo Credit Mary Berry

The other day I attempted to make fruit scones to have with jam and clotted cream. I chose Mary Berry’s recipe and added some photo’s of the different stages.

I also used mixed fruit instead of sultanas and used 100ml of milk and 50ml of cream. Thank you to P for the tip of using cream for a softer scone.

Ingredients

• 75g (2 1⁄2 oz) butter, chilled and cut into cubes, plus extra for greasing

• 350g (12oz) self-raising flour, plus extra for dusting

• 1 1⁄2 tsp baking powder

• 30g (1oz) caster sugar

• 75g (2 1⁄2oz) sultanas

• About 150ml (5fl oz) milk

• 2 large eggs, beaten

Method

Preheat the oven to 220°C (fan 200°C/425°F/Gas 7). Lightly grease a large baking sheet.

Put the flour and baking powder into a large chilled mixing bowl.

Add the cubes of butter, keeping all the ingredients as cold as possible.

Rub in lightly and quickly with your fingertips until the mixture looks like fine breadcrumbs.

Add the sugar and sultanas. Pour 100ml (31⁄2fl oz) of the milk and all but 2 tablespoons of the beaten egg into the flour mixture.

Mix together with a round-bladed knife to a soft, but not too sticky dough, adding a bit more milk if needed to mop up any dry bits of mixture in the bottom of the bowl.

Turn the dough out onto a lightly floured work surface, lightly knead just a few times only until gathered together, then gently roll and pat out to form a rectangle about 2cm (3⁄4in) deep.

Cut out as many rounds as possible from the first rolling with a 6cm (21⁄2in) cutter (a plain cutter is easier to use than a fluted one) and lay them on the baking sheet, spaced slightly apart.

Gather the trimmings, then roll and cut out again. Repeat until you have 10 scones.

Brush the tops of the scones with the reserved egg. Bake for about 10 minutes, or until risen and golden.

Remove and cool on a wire rack.

Cooks in 10mins.

Approximately 10 Servings.

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 ❤️