Blog No 153 – PRRT During Covid -19

Hello Everyone

Sorry, it’s been some time since I last blogged. Life took over, covid -19 took over and PRRT symptoms took over. I don’t think anyone is going to forget 2020 in a hurry. I can’t wait to see what the history books say.

Let me start, by telling you I’ve had PRRT #3 last month and I will be having #4 is in October. My PRRT goal was to improve my daily symptoms and if it slowed down my progression that would be a bonus. I have been typical patient in respect of symptoms, hair thinning, pain, flushing and fatigue. It’s also true that your symptoms do indeed get worse as treatment goes up.

I was initially an in patient over 3 days but due covid -19 the hospital started to do the treatment as a day case. Personally, my preference is getting the treatment in a day but I don’t like the travelling home situation. On a good day it can take up 90 mins, nevertheless if traffic is bad it can take longer.

Once the treatment takes hold, I did endure tumour pain. As the tumours get inflamed, you know the treatment is on track. It can aggravate your carcinoid symptoms too, which intensifies your flushing or bowels. Lucky me, I was exposed to both. The next treatment had been delayed due to me sustaining bone pain. Therefore, we are allowing 12 weeks instead of 8 weeks I was doing, between treatments.

Covid -19, has been challenging for everyone and more so for many people. I personally think people has become complacent, ignoring the rules etc. I don’t understand people’s ignorance but I guess that will always happen through any situation. I would like to say thank you to all workers, key workers and the medical profession for working through a particularly hard situation.

During treatment and covid -19, my mother was diagnosed with a secondary cancer. She’s being tough, however she has suffered additional side effects and her chemo has been cancelled on a couple of occasions . She is fighting through the obstacles like a trooper. Mother & daughter going through treatment at the same time, just blows my mind. It certainly would make a great book.

I’m going to embark on my blogs again so please watch this space. Love to you all.



Blog No 152 – Peptide Receptor Radionuclide Therapy

I started this blog prior to commencing my first Peptide Receptor Radionuclide Therapy (PRRT) treatment.

Since my diagnosis I’ve changed in so many ways. I have learned from my disappointments and grasp the opportunities when they arise. The opportunities, allow me to be normal and not as patient like I do everyday.

I personally can see now that I look sick and I can’t say that I’m a lover of it but I’m accepting of the situation. In spite of that I’m normal with no visible illness. There’s no dramatic weight loss or evidence of me wearing a headscarf to cover hair loss.

Last weekend, we travelled to Bath to distract us both from the upcoming treatment. We were both grasping the opportunity of normality in a beautiful part of the UK. It rained buckets but we had a wonderful time before heading to London

The PRRT treatment will hopefully allow me to be more managed and not a case of the cancer managing me.

The proposed short term side effects are

  • Nausea
  • Vomiting
  • Abdominal Pain
  • Fatigue
  • Mild Hair Loss

The leas common side effects

  • Bone, Liver and Kidney Toxicity

I am experiencing some short term symptoms and it’s not easy. Who in their right mind says yes to radiation via an IV. The answer is any person who wants to extend their life and that’s me. My life is not over and I have more goals to achieve.

Blog No 151 – Being Vegan

I became vegan at the end of October to see if my daily symptoms would improve. Im happy to report, there is definitely some improvement. Mr Zebrakat became vegan at the same time and had noticed, he’s never hungry now, his sleep has improved and he feels fitter whilst playing football/soccer.

As I said previously, I actually became vegan to improve my daily symptoms. Years ago, I was informed that I have an egg white & cows milk intolerance. Therefore I had always drank my coffee & tea black. If I was to have milk in cereal etc, I would have rice or soya milk. Subsequently, I wasn’t good at avoiding milk or eggs in products. I didn’t always read the labels to dodge the products that I was sensitive too.

Being vegan eliminates animal based foods, like milk, eggs, meat, fish and honey to name a few. I’m used to buying alternative milk products although I had never tried alternative cheese or cream. Essentially vegan makes it easier for me disregard those products, whereas being vegetarian I would still be eating products with ingredients including cows milk, cheese or eggs.

I have been reading social media, books and magazines to gain more knowledge about veganism. I’ve certainly learned some incredible facts, however I’m not going to quote them just in case they are totally incorrect.

Tell me …….Why does everyone have an opinion about someone being vegan. It does make me laugh the questions I’ve been asked by non vegans and vegans. Your either nuts or not vegan enough. I believe being vegan is making a small contribution to animals and the environment. Any contribution is surely better than no contribution at all.

Did you know there is accidentally vegan products too. These are products that are created without intentionally being vegan. (Free of animal products)

Here is a few products that are accidentally vegan.

  • Walkers Prawn Cocktail Crisps
  • Jelly Tots
  • Fox’s Party Rings
  • Ritz Crackers
  • Peanut Butter
  • Chinese Chow Mein Pot Noddle
  • Bistro Gravy Granules (Original)

Hopefully I will continue to feel the benefits of being vegan. Roll on PRRT treatment (cancer treatment) this month.

Blog No 149 – Cancer Update

Just before Christmas I went to London for more scans etc. Although my symptoms had been a mixed bag since stopping treatment, I was carrying on regardless. Subsequently I also tried to improve my daily quality of life. I went vegan at the end of October and Mr Zebrakat came along for the ride with no expectations. Believe me or not, we are both enjoying the change of diet. We are both benefiting from the change in one way or another, yet nothing can stop the pain but medication (Morphine). Fatigue and nausea etc can knock you for six too but that’s cancer for you.

On the 27th Dec, my Oncologist called me at home to inform me that my latest scans revealed more growth. Well that’s a surprise NOT. 😂 My Oncologist intends to commence PRRT in mid Feb. I’ve been chasing this treatment for over a year and now it’s finally happening.

How do I feel, well it validates my symptoms and concerns with my body. The specialised treatment has had some amazing results with Net patients. Remember this treatment is not a cure but can possibly extend your quality of life. This is my final trump card, hopefully it’s the best hand I have.

Addendum

I had a colonoscopy yesterday only for the Doctor to take 8 biopsies. I could see that I had additional growth in the colon. It was only 2 yrs since my last operation on the bowel.

Blog No 147 – Cancer Update

Cancer Update.

So I’ve been a bit quiet for a while, here’s why. I was having a hell of a time dealing with symptoms from my cancer treatment (butt dart). Back in end of April we decided to stop the cancer treatment to see if my symptoms would improve. Overall they have to be honest giving me a better daily quality of life. Nevertheless it’s not perfect, as my pain is now emphasised more. On top of that I’m dealing with spine pain and nerve pain. I have good and bad days. Not withstanding the above, there is more bad than good days. Thank god Mr Zebrakat, married me in sickness and health. 😅

Last Monday, I seen my Oncologist who informed me that although I’m stable. I have cancer in my stomach & pelvic areas, liver and peritoneal. Also my spine is lighting up on the scanner but my Spine Consultant already suggested he felt this was the case prior to any cancer scan.

The way forward is continue to stay off the cancer treatment. It was a decision that I tortured myself over before the appointments. A case of what ifs. More blood and urine tests and rescan end Feb beginning of March. In the meantime, I have my other Consultant appointments to attend. Since writing this update, I’ve received a sneaky scan to be done next month.

Life goes on, I’m not on social media as much, I’m trying to do bits around the house, still reading, resting more because of symptoms and I need to get back to my blog. X

Love to you all. ❤️

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 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 104 – Dudley Zoological Gardens, UK

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After being so ill the previous week Mr Zebrakat took me away for a mini break. If that meant staying in a hotel room for most of our visit, that was going to be ok. The aim of the break was a change of  scenery. As i was feeling stronger this week and only dealing with pelvic pain and not migraines, we decided to go to Dudley Zoo.

Dudley Zoo is 40 acres surrounding a 11 century castle and was opened in 1937 by the 3rd Earl of Dudley. Most of the animals are linked to international breeding and conservation programmes.

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Some of the photos taken during our visit.

Camal – Bactrian

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Guanaco

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Chimpanzee

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This chimp looked so cute sleeping

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Rhea

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Tortoise

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Lemur – Black & White Ruffed

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Tragopan

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Kangaroos

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Sheep –  Barbary

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Capybara

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Giraffes

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Tiger

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Kookaburra

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Flamingos

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A lovely zoo with so many animals to see, therefore a worthy trip for adults and children.

Next weeks blog is Black Country Museum