Merry Christmas Everyone.
I will be blogging over the next week including a medical 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. ❤️
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. ❤️
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.
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.
• 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
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.
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 ❤️