Blog No 172 – Cancer Update.

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Hello everyone, 

Wow it’s been a while, My life seems to be consumed with medical issues and I didn’t want to bore you all with the in and outs.  It’s been over a year since my last PRRT treatment, which was executed in London   Therefore it’s time for a little update. 

I can’t believe I’ve reached yet another birthday in January. Something I certainly didn’t believe I would achieve, following my cancer diagnosis. Life has unquestionably changed dramatically since that very day I was informed that I had a rare cancer. There’s an undeniably truth in the saying, your life can change in an instance. No-one prepares you for the enormous life change that’s about to happen. Notwithstanding this, there’s no better feeling, than to wake up in the morning for another day of life. 

I’ve learned to be exquisite, to challenge, and to do my own research. Everyday is a school day and i continue to deal with ongoing symptoms. I do feel that following my treatment there has been some improvement in my symptoms but others have just escalated. 

Hearing loss, I can hear you say hearing loss, excuse the pun. I’m that 1% who lost my hearing through treatment. I should stress that it’s not complete hearing loss but considerable enough to warrant two hearing aids. I saw an Audiologist about 4 months after completion of treatment as I felt my hearing was deteriorating. My useful skill of listening to two conversations had gone. I got retested a couple of months ago and it was confirmed that my hearing had deteriorated further. According to the Audiologist, the treatment had killed the nerve endings in my ears. I have to say it’s good to be able to hear but I’m now very noise sensitive when I have the hearing aids in.

Flushing has beyond any doubt increased. looking like a strawberry at times can be quiet embarrassing. Let me stop you just there, this not menopause but a cancer symptom. The tumours in your body secrete serotonin causing your body to flush. I can glow with various symptoms and one of them is the feeling of pain. Someone said the other day, my body looks like a bad case of sunburn, he’s right. Furthermore it glows from head to toe and can happen numerous times throughout an hour.

Lumps. After treatment, I developed a lump on my forearm. The lump appeared from nowhere, for this reason my GP and I decided to play a game of watch and see.  Obviously it wasn’t joint related as the lump was in the middle of my forearm, it was under the skin, hard to feel and pain-free. As the lump appeared to continue to grow, the next course of action was an appointment with a Dermatologist for a biopsy. The lump was biopsied and turned out to be benign tumour but was very rare. I appeared to be a woman of rare health issues.

At the time of the biopsy I was asked if I had any other lumps and my reply was no. As the lump was not bothering me, no further action was required at this time.  

Subsequently a couple of months later my GP had to request another biopsy on behalf of my Oncologist in London.  At the time of writing this, there is an additional 3 lumps, we are maybe up to 4 now. I see the Dermatologist mid March.  I believe it to be the same rare benign tumours but I will have to wait and see. Surely there is a reason for these little devils appearing, maybe it’s due to my recent cancer treatment.  

Pain. I have pain in a couple locations both the spine and chest area.  The spine, I have sciatica in both legs down to my toes.  The Spine Specialist was meant to do spine injections a few months ago but I haven’t called him to arrange a treatment day.  He’s clearly chasing me, as I have a telephone consultation in the next couple of weeks.  

I will give you my reasons, I’ve have a lot going on and I’m trying to resolve those issues before going forward with another treatment. Besides, it doesn’t necessarily work, therefore I endured pain to have more pain. I don’t see the point of going again and again for something that doesn’t necessarily work and my GP agrees. This is a discussion I need to have with my Spine Consultant. I will get a second opinion by getting a private scan and have a discussion with my GP to take the appropriate action.

Additional pain is in the tumours in peritoneal membrane near the liver.  This is on another level of the Richter scale.  The Chronic Pain Consultant discussed the injections on the request of Oncology Consultant & my GP.  The approach was injections but when discussing it with the Consultant on my birthday if all days. I would  try the increase in morphine first and if I have issues, we would do the injections into the peritoneal immediately. I did inform her that it’s worth giving it a try but previously I haven’t tolerated too much morphine. I’m able to tolerate my usual morphine when sleeping and top ups of liquid when required, however increasing the tablets cause’s me too many problems to name. How do you find the balance?, it’s either suffering pain and have some normality to my day or for taking the edge of pain and zero quality of life. I had the injections yesterday and I will have my lower pelvic area done in April when the consultant returns after a month leave  

Endocrinologist. I have a lovely Consultant who monitors my thyroid, this is another issue brought on by the cancer. On the positive note my thyroid is managed well under his care. However he didn’t like some of my recent blood results and have requested I do further immediate blood tests, which I’ve done yesterday. Let’s see what happens there.

Other symptoms – You don’t need to hear the in’s  and outs of everything, nevertheless it can be challenging at times 

Novembers Oncology Scans – Suggest that I’m stable but my body is suggesting otherwise. I have tumours in the peritoneal, lower pelvic area, liver and lungs and wherever else the sneaky devils have put their head down. I feel there is even some reoccurrence to previous organs.

Although I’m challenged on a daily basis, I’m on this earth living a life many others don’t. Sometimes we feel things are done due to fate, which are either a lesson or blessing This situation is maybe a lesson it’s definitely not a blessing.

On the good days I’m still making art with recycled postage stamps. Check out my Etsy shop, Facebook, Instagram, Pinterest and Twitter   “Postage Stamp Artistry”  

Love to you all. ❤️

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Blog No 166 – Overview of 2020

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Happy New Everyone

Family & Friends

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. Especially all the people who sent cards, flowers, plants, mags, chocs & sweets, biscuits and messages.

The year started with a trip to County Cork, Ireland to celebrate Aunt P, 80th birthday with family. It was was such a heartwarming celebration. Aunt P knows how to provide a party, we had it all, fabulous food, good company and magnificent entertainment. She’s a very courageous lady, she had literally just finished treatment for breast cancer and we were hopping on a plane. Thank you Aunt P for a wonderful time.

To my relatives in Ireland it was wonderful catching up with you all. We will be back when it’s safe to fly again.

Covid 19 played havoc with special birthdays, weddings and new baby’s this year. I’m sure these celebrations were as special as they could be.

Hamish & Lottie

Hamish has been part of the family now for 2 years. Lottie & Hamish are very much in a routine with toilet breaks, feeding and sleeping. Your more than likely to find Lottie at my side and Hamish sleeping on my bed blanket. I’m sure my neighbours must laugh at Lottie and Hamish when they are running into the house together from the garden. It’s quiet comical watching them following each other like sheep. They are known to kiss and lick each other first thing in the morning.

Hamish still looks like a lion and is slightly larger in stature to Lottie. Lottie can hold her own too, if Hamish tries to grab her. Pets are obviously very therapeutic.

Home

Copyright 2019 Zebrakat

We are still tweaking our current residence. It’s certainly changing in appearance and no longer represents a typical terraced house floor plan. We started in the roof space and now we are on the ground floor, working from the front of the property to the rear. I’m waiting for a replacement front door, which has been delayed due to covid 19. It’s been on the order since October.

I wanted to show you a cupboard that I’d designed earlier in the year and finally put into its place. I needed the unit to fit on a plinth in my guest bedroom. It’s made out of scaffolding boards. Anyone who knows me will appreciate I love a little timber in my decor.

The cupboard consists of doors, drawers and shelves. Behind the doors is some hanging space and some additional shelving. Its perfect for guests and now considered a new heirloom.

Health

I’ve already discussed my health in previous blogs. I’m glad treatment is over for now, I’m hoping my body gives me a little respite from medical appointments and health issues. I’m planning to continue as I do, live life and be happy.

Travel

Travel this year has been a bit of a washout, however I’ve still managed a few places. I was able to fly to Ireland earlier in the year, which was amazing. I’ve also visited Bath & York, both historical cities. Bath & York are full of beautiful architecture, fabulous restaurants and quaint shops. I would recommend both cities a visit, magnificent gems of the U.K.

Mr Zebrakat

Mr Zebrakat is working from home and on site as he works in the construction industry. It is nice having him around. On a positive note, covid had Mr Z at home when I was going through treatment. He unquestionably is happy he’s working and is one of the lucky ones still working.

Mr Z is undoubtedly been my tower of strength going through treatment and family hospitalisations etc. Thank you Mr Z for always being there as always as usual, what would I do without you.

Hobbies

Reading, I did about 66 books last year, so beat my previous years record. Watch out for my next blog for my annual list of books.

Covid has allowed me to frame up & hang some travel pictures etc. I’v also been filling up photo albums with old photos. I still have numerous to do but I’m getting there. I’ll then move on to filling up scrapbooks with memories and mementos.

Hopefully 2021 will no longer be a year of doom and gloom. We all need to be vaccinated and getting on with our lives. Love to you all 🤣

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 148 – Overview of 2019

Happy New Year Everyone.

January

Harrods

As I was recovering from surgery last year on a special birthday. My husband took me to London this year to be a tourist for a couple of days.

Thriller Live at Lyric Theatre

We experienced some amazing food, indulged in breakfast at Harrods, saw the Thriller Show and visited a couple of museums. We have spent so much time in London on medical visits and never participate in tourist delights.

February

Hamish Being Cheeky

Hamish is a year old this month. Its hard to believe my ginger tom has been with us nearly a year. He’s so content with us and Lottie. He loves to hide behind walls or furniture to jump out on Lottie and then the big paw comes out. There is other times when they are kissing each other. The photo above, I found him in my hand basin, he’s never done that before. The photo below is the love they feel for each other.

Hamish & Lottie Kissing

March

RIP Auntie M

I lost an Aunt this month who was going to be 90 later in the year. She was an amazing woman, who had an interesting life. She was born In Ireland but spent most of her life in the U.K. She was 1 of 8 siblings and had 5 children in her family.

It was her time to leave us and to be reunited with her closest sister Auntie N. I’m sure they had a lot to discuss over a nice cup tea and a slice of cake. RIP Auntie M.

April

Main Bedroom Art & Lighting

The house renovations are starting to take shape. We provided a beautiful sized bathroom. Created a walk in wardrobe for our clothes etc. Additional storage for books etc in the hall.

Mr Zebrakat’s Section of Wardrobe.

The photo is only a small section of the wardrobe, it’s actually 4m long. I designed the wardrobe and Mr Zebrakat & my brother built it.

Plastered Walls

We are currently snagging the loft room(Office), 2 bedrooms and the bathroom on the first floor before making big changes on the ground floor. We have achieve a lot already, ripping the house up to its bear bones. Let 2020 make the ground floor spectacular.

Bookcase Built Under The Stairs

May

Stratford Upon Avon, Warwickshire

This was a fantastic month because I met fellow cancer friends K & H and their husbands. We decided to meet centrally due to my problems, therefore we met in Stratford Upon Avon, Warwickshire.

Stratford Upon Avon, Warwickshire

It was an exceptional weekend with excellent food and good company. We intend to do something again this year but H and I are currently having PRRT treatment. I will blog and update over the next couple of days.

June

Trevi Fountains

Ciao a tutti

We were in Rome this month for the first time in our lives. OMG everyone should go. You have everything in this city, weather, food, architecture and history.

Street Scene

We were going to surprise our American friends who are like family. They are two very amazing people with big hearts. We gelled with each other as soon as we met. The surprise was priceless and a memory we will remember for ever.

Spectacular Views

July

Test Results

This was the month of hospital appointments and visits. Pain was revealing itself in various locations of body. My spine was even getting in on the act but I will blog about that separately.

August

Kino Lounge

We went into Kettering, Northants one day and found this amazing restaurant that serves great food. The building interior is so amazing with the perfect ambience. It’s very laid back and has a mixed demographic.

September

Lottie become 9 years old, it’s hard to believe to be honest. She’s more clingy than ever. I also feel she knows when tumours are having the time of their life inside my body. She tends to sit on the exact spot. She’s such an intelligent dog and I can’t fault her. She’s honestly helped me through my illness.

October

Fruit & Vegetables

As I’ve been struggling with symptoms, I’ve decided to go vegan. I do have an allergy to cows milk anyway so 70% of the time I been having alternative dairy products anyway. Mr Zebrakat & I both started together then someone said to watch Game Changers on Netflix. Although I had made the decision to become vegan prior to the programme. The programme definitely opens up your mind.

However being vegan definitely makes me avoid cows milk in products. I feel we have both benefited from the change of diet. Not only does it have an impact on our health, we feel we are contributing to animals and the environment.

There is so many supermarkets doing vegan or plant based food to substitute meat/fish products. Restaurants nowadays are providing vegan menus with fabulous choices. I personally don’t miss meat etc and feel that I’m making a small contribution to animals and the environment including my health.

November

Jess & Ryan

This month we went to a stunning wedding in Cheshire. J the bride is the daughter of my best friend. I have known J since she was a small child and she’s grown into a beautiful woman & caring mother. We never expected to go to her wedding and we feel completely honoured to be invited. It was a stunning day and a wedding never to be forgot. J married the handsome R, her soulmate and I’m sure they will be happy forever. Congratulations to you both ❤️

December

Is about to start, yeahhhh

Following a recent scan and some tests results, My Net Consultant telephones me and informs me that I’m about to embark on PRRT treatment in February 2020. I will blog about this separately.

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 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 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. ❤️