Blog No 165 – PRRT & Covid 19

What a year, with covid-19, I don’t think anyone is ever going to forget 2020 in a hurry. Did you achieve something positive through lockdown? I did, I hung up some pictures, sorted out my photo albums and filled them with lovely memories. If we hadn’t gone into lockdown those empty photo albums would still be there, looking empty.

I consider myself one of the lucky ones this year, as my cancer treatment continued in London throughout lockdown etc. The hospital had experienced numerous cases of covid-19 patients and precautions were put into place for the safety of staff and patients. I was required to have a covid-19 test locally prior to travelling to London. A negative result was vital in order for treatment to continue. I would like to thank all those individuals who were involved with my treatment at the Royal Free Hospital, London. Thank you so much.

My mother had a tough year after being diagnosed with a secondary cancer. Her cancer treatment continued locally throughout lockdown/covid 19 with a few hospital stays. We both had finished our treatments within 2 days of each other. She is doing much better now but she’s not still 100% as yet. She’s a tough cookie. X

PRRT treatment – everyone has a different experience but we all have similar symptoms. The treatment procedure is not that bad, the only symptom you may experience during treatment, is nausea. The medical team will give you anti nausea meds prior to treatment. They can also control the flow of treatment so you don’t experience nausea. The more treatments I had, the worse post treatment symptoms got for me. What’s funny is, I can’t face pasta since the last treatment. The thought of pasta in any form still makes me gag. I’m not sure I will ever tolerate spaghetti bolognese again.

I’m so relieved that we have finished treatment for now. We are 9 weeks post treatment and my bloods are still not to normal levels. They won’t exactly be perfect due to the cancer, nevertheless they still need some improvement. My Oncologist is keeping an eye on them for me, I’m in good hands. My hair has thinned a lot since treatment but it will grow back I’m sure. During my treatment my hearing was affected and it’s certainly not a known side effect. Yet it can’t be dismissed either. I’m also experiencing dizziness but we don’t know, if there’s a connection to the hearing or if it something else that is going on. I’m starting to get terrible migraines again so I’m monitoring that for the Neurologist. That’s the problem with an illness, it can lead to other problems.

My daily quality of life, I would consider has definitely improved. At the end of the day there is no cure for my cancer, therefore I wanted a quality life whilst I was living, that’s not too much to ask

The latest results following results following my recent CT & MRI scans was that I am stable. Stable means no new growth of cancer in other areas. This is a little questionable for me, because I only found out that I have tumours on my lungs whilst going through treatment. In my eyes that new growth but in their eyes it’s tumours over a certain dimension. I’ve obtained all of my records as I don’t like being kept in the dark. This latest scan gave me the dimensions of the new tumours in the lungs so I can monitor the growth. Even though I’m consider as stable surely the lungs is a new site of cancer, I have cancer in the peritoneal, pelvic area and liver and a couple of other questionable areas. My Oncologist is going to send me for cancer (Ga68) scan in April. This may give me a true reflection of what is really going on, although my scans don’t always reveal everything. I personally don’t think it will be long before I have another op on my bowel. You heard here first lol.

My ultimate goal with treatment was to improve my daily quality of life and I do feel we achieved this. I’m so grateful for my new found freedom in lockdown lol. Thank you to my friends & family who have always supported me through my treatment.

Just one more thing, I was giving support to another patient going through the same treatment. I will call her SC, she was a wonderful lady and I had found another loyal friend experiencing this same cancer. I have a few more cancer friends and ladies, you know who you all are. X SC was suffering from a lot of pain and I personally don’t feel she was getting the support she needed. Clearly there was more going on, therefore I was devastated to learn from her husband that she had passed away. I do believe that I’m still here because I do my diligence and I’m very persistent. I would say to any patient of any illness, go with your gut, and fight for you health. Rest in peace SC you will certainly be missed by me. X

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 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. ❤️

Blog No 145 – Wedding Anniversary

Yesterday we celebrated our wedding anniversary. Another year has passed, yet it only seems 5 minutes ago we got married. It was such a perfect day we celebrated with family and friends.

We’ve done so much in our married life, I hope there is room for more adventures to come. Mr Zebrakat told me last night, wouldn’t it have been good, if I had taken you back to our honeymoon destinations. He said he was going to hand me flight tickets to Miami and then on to the Bahamas. I would have been shocked but it wouldn’t be the first time he had surprised me with a trip. I just remember the heat in Miami this time of the year was unbelievable temperatures. How I would kill right now for a blue sea, an ocean breeze and sand in my flip flops.

Instead my sister in law invigorated me with coffee aroma and sweet bakes. Basically speciality coffees, plain scones with butter and jam preserve. The last couple of days especially Tuesday, I was so ill, I feel like I’m starting to get a bowel blockage again as I have the typical symptoms. Them dam pesky tumours won’t leave me alone, they are always wanting a nibble of my fine dining.

Mr Zebrakat gave me a beautiful bouquet in our wedding theme colours and took me to a local Italian restaurant. We both started with drinks as neither of us wanted a starter. Our main course choice was the same.

Beef Involtini Stuffed with Parma Ham, Pine Nuts & Basil in a Rich Tomato Sauce with Linguine & Garlic Buttered Green Beans

And for dessert, the top plate is Rhubarb and Custard Semifreddo with Poached Rhubarb and Pistachio Cream

The bottom plate dessert is Elderflower Infused Panna Cotta with Raspberries & White Chocolate Crumble and Peach Syrup.

The meal was excellent. A very quaint restaurant in the town and even though it was a Wednesday night the restaurant was fully booked and they had to turn people away.

Mr Zebrakat thank you, thank you for absolutely everything you do for me. You are an amazing individual with the kindest heart and I couldn’t wish for a more dedicated husband. Happy Anniversary ❤️ Now leave me alone to continue dreaming about blue seas……..

Weekly Blog No 140 -Update

I shouldn’t be calling my blog a weekly blog nowadays, as clearly its been some time since my last blog. I do love writing them but I don’t want my blogs to be just about medical stuff. It’s hard not too, when your life is medicalLy focused. This blog is going to be medical but the next one will be non medical. Keep your eyes peeled.

Let’s get the medical update out the way. Since the beginning of the year till the end of March, I’ve had approximately 35 medical appointments and approximately 10 of them have been scans.

I’ve been having ongoing issues that require continual Specialist input. I’m under 3 hospitals but I’ve been scanned at 6 medical facilities in 3 different county’s of the U.K. one of them being in London. My appointments are tiresome and travelling can be very demanding. I’m currently under the following Specialists Oncologist(Net Specialist), Neurologist, Spine Specialist, Endocrinologist, Cardiologist and Neuropsychologist. Is there any gist that I’ve left out? maybe not. Subsequently you can see that my life is a balancing act of symptoms and appointments.

There was some concern recently that carcinoid syndrome had affected my heart. Therefore, I’ve been undergoing various tests and I’m glad to report my heart is good. Yeah high five to a healthy organ. On the other hand, my high blood pressure is currently out of control. Even my existing medication wasn’t resolving the issue. Therefore the Cardiologist has introduced a third medication to reduce the numbers. I’ve yet to see if the numbers have been reduced. My suspicions is my blood pressure won’t reduce with the assistance of additional medication. I believe it’s tumour activity as from my previous experience it spikes my blood pressure. I willing to accept that I was wrong if it does work and reduce the numbers considerably.

Furthermore I need to buy a T-shirt with the following words ” I don’t suffer from white coat syndrome’. When you attend a hospital appointment, the nurse takes your blood pressure and quote on the T-shirt may save me from repeating myself explaining what the underlying cause is. I hate assumptions, as too many people make them everyday.

The Spine Specialist is still under the impression that I have cancer on the spine, however he’s going to monitor the progress. I have a lot of spine pain and sciatica down both legs. Next week I’m having nerve block injections again. Should the injections not work, I will be going under the knife again. If I do end up having another spine op, he will be doing a biopsy on the spine.

Endocrinologist, I have to say this Doctor was not only very approachable but very funny too. I was very impressed with his knowledge of my medical history. His waiting list for appointments is 10 months but he’s going to see me again in 3 months for results. My thyroid is not corrected itself with medication. He’s upped my medication to 300mg, which is very high. It doesn’t appear that I’m absorbing my medication. Light bulb moment, didn’t I say that nearly 2 years ago to my medical team. Ummmmm. The Endocrinologist is proposing a T3 treatment but I will have to explore this option more.

The Neurologist is happy that the migraines are better controlled by an increase of medication. I really didn’t fancy an injection in the head.

The Net Specialist had ordered additional bloods and scans, which I’ve done and he will update me going forward with treatment at the end of the month.

Neurophysiologist will be doing nerve testing at the end of the month due to issues that have become apparent in the last couple of months. There’s no obvious reason for damage to my thoracic nerve either. Let’s hope the Neurophysiologist can shed some light.

There’s never a dull moment in my life, yet I continue life like there’s nothing wrong. I’m not going to deny it’s not easy some days but I’m not going to dwell on them either. There’s a saying “strength does not come from winning”.

Weekly Blog No 139 – My Birthday

Copyright © 2019 Zebrakat

I’m falling behind again in my blogs due to symptoms. However I’ve made another birthday, how amazing is that. I have currently reached 5 birthdays since diagnosis, what an achievement.

Last year my birthday was post op, Mr Zebrakat decided to make my birthday this year a little bit more special. He had organised a weekend in London. Although it’s quiet difficult for me, I was up for the challenge. Who doesn’t like a change of environment and to feel normal again.

We stayed in a beautiful hotel in South Kensington adjacent to the museums. The hotel treated us like VIP guests. They also left me a bottle of claret, a gift box of spa products and a nicely handwritten card from the Hotel Manager. The hotel decor was stunning, the cleanliness was immaculate and the customer service was impeccable.

We went to V & A Museum, there is no way you could view all the exhibits in a day. The venue has 145 galleries, therefore an incredible amount of exhibits. From architecture, furniture to sculpture. Well worth a visit and a walk through history.

Copyright © 2019 Zebrakat

On my birthday we went to see a West End show called “Thriller”. A spectacular show of Michael Jackson hits. The resemblance of MJ was unbelievable. The hits just kept coming and coming. The dancing phenomenal throughout the show.

Copyright © 2019 Zebrakat

We also visited the Imperial War Museum, Lambert, an insight of war history. The museum exhibits WWI, WW2, The Cold War and the Holocaust and much more. I’m not sure if the Holocaust exhibit is a permanent exhibition but its anniversary is on my birthday, which I will never forget.

Copyright © 2019 Zebrakat

Copyright © 2019 Zebrakat
Copyright © 2019 Zebrakat
Copyright © 2019 Zebrakat

Copyright © 2019 Zebrakat

One lesson that I had learned from Canada was we don’t explore our own country enough. In my past life, any opportunity for a break away from work. I would jump on a aeroplane and leave the country for sunshine & culture. Clearly forgetting that there is so much to see in the U.K. Canadians are fantastic at exploring their own country. I’m starting to realise now the U.K. has a lot to offer but it’s not always cheap. You need to shop around and grab online deals when you see them. It’s unbelievable that a city break in Europe is sometimes cheaper than a weekend in the U.K.

On our final day, we went to Harrods for breakfast. What a wonderful experience that was, the service was errorless. The food was of the highest quality, served on china. The tea set was silverware. The ambience of the room was art deco with background music of the rat pack. A divine experience on how the other half live.

Copyright © 2019 Zebrakat

Thank you, thank you, thank you to all my family & friends for cards, gifts, balloons and flowers.

To my awesome husband, for making memories, treating me like a queen and always putting me first in life. You are one of kind and I won’t let you forget that.

Love to you all.

Weekly Blog No 136 – Annual Reading List

My goal for 2018 was to read more than 24 books. My reading this year has been hit and miss. I know I did a count in September and it was 21 books and I thought this was going to be an easy target to achieve with an average of 2 books a month. I was very much mistaken because it remained at 21 books, therefore I didn’t reach my target.

Here is my reading list: –

  1. Flesh and Blood – Stephen McGann
  2. A Little Leaving – Anne Bennett
  3. The Liverpool Rose – Katie Flynn
  4. Me Life Story – Scarlett Moffat
  5. The River Maid – Dilly Court
  6. Fear of the Collar – Patrick Touher
  7. Mothering Sunday – Rosie Goodwin
  8. A Daughter Courage – Kitty Neale
  9. The Soldiers Daughter – Rosie Goodwin
  10. An Orphans Secret – Maggie Hope
  11. Mill Girls – Tracey Johnson
  12. Dancing in the Dark – Maureen Lee
  13. Pie N Mash & Prefabs – Norman Jacobs
  14. The Report – Jessica Francis Kane
  15. A view Across the Mersey – Anne Baker
  16. The Summer Maiden – Dilly Court
  17. A Promise Between Friends – Carol Rivers
  18. Stories of the Law and How It’s Broken – The Secret Barrister
  19. No Silver Spoon – Katie Flynn
  20. A Christmas Candle – Katie Flynn
  21. First Man in Leading the Front – Ant Middleton

A few new authors this year and the Stories of the Law and How it’s Broken by The Secret Barrister was a very educational book into the legal system in the U.K.

A book that very educational was Flesh and Blood by Stephen McGann. A very informative book on family and medical history through the decades/centuries in Ireland and U.K. I do love to hear about people’s family history and even better if I get educated on the way. Worth a read.

As for the First Man in the Leading the Front by Ant Middleton. I think this man is misjudged by his size and chosen career. I wouldn’t make assumptions and read this book.

The most horrific book I read this year was Fear of the Collar by Patrick Touher. The cruelty to innocent children was unbelievable and was well worth the read. The eye opener.

In 2019, I will aim to read 24 books again. I will have too as my house is full of books and I need to de clutter. Let’s see how this year goes. Happy Reading.


Does anyone have any book recommendations?

 

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 ❤️