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
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.
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
Fox’s Party Rings
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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 ❤️
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.
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
Last weekend, Mr Zebrakat and I took a short drive for some lunch. The Biltz Tea Room & Jazz Lounge had been on my radar for a while, therefore I was very curious what the building interior was going to be like.
The Blitz Tea Room is a family run business. The venue is located adjacent to the Kettering Public Library. The name of the venue, obviously gives you a little clue of the theme of tea room. Hence, I was expecting to see some 1940’s memorabilia, dark wood furniture and classic wartime crockery.
Here’s a couple of photos of the venue.
This photo is pointed to the ceiling to try and capture the sky, the planes hanging down and flags etc.
The menu was a ration book with a choice of sandwiches, omelettes and panini’s etc. A vast choice drinks in specialty teas. I took a photo of a page from the menu, which references Vera Lynn and Churchill both 1940s icons.
Mr Zebrakat chose a pot of speciality tea. He was given a special timer, which determines the strength of tea you like. The longer the timer, the stronger the tea. The milk was served in an old fashioned milk bottle. It’s a miniature size of the original size of a milk bottle. This particular size bottle was given to us as children in primary/elementary school. The sugar was served in cubes a wartime ration.
We both chose different sandwiches, which was served with salad & crisps served on cute flowery china.
We then indulged in fruit scone each served with raspberry jam and clotted cream.
Some of the venues memorabilia on the walls and display cabinets.
Although the food was wonderful, it was quite pricey. I would recommend you go and experience it yourself. There was a couple of parties there, clearly celebrating special occasions which is unique.
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……..
At the end of May, Mr Zebrakat and I went to Rome for 4 days to surprise our dear friends. Unknown to them, we had been in cahoots with their children to surprise them when they had arrived in Rome from Florence. They had travelled from the USA to explore some of Italy before boarding a Mediterranean cruise. We’ve never been to Rome and knew that if we took this trip we could kill two birds with one stone.
Cakes served on the morning buffet
Street scene outside our hotel
After getting the necessary paperwork to confirm I was fit to fly. I had the tedious task of obtaining travel insurance. I have to be honest it’s hard work and frustrating. Firstly explaining your cancer, as there is too many assumptions made. Secondly being refused by companies that specialise in cancer travel insurance. Thirdly the rip off price that you get penalised for.
We haven’t seen our friends for 11 years. Shocking, I know. Our last meet up was Las Vegas in 2008, which I have to say was an exceptional trip. Time can just pass you by sometimes.
Our friends J & S had organised trips prior to arriving in Italy. Therefore we were happy to slot into their schedule, as it gave me time to rest between our meet ups.
We waited for their arrival in their hotel foyer. When they did finally arrive, we were both trying not to look too conspicuous in the corner. J was checking in and S took a seat. I approached S first and I will never forget as long as I live the surprised look in her face. Then came the hugs, the words to the effect of “OMG, I can’t believe it ” and then tears of joy. J turned around and thought it was a coincidence that we were both in the same hotel until we explained we came to surprise them. U.K 1 – USA 0. It was a fantastic feeling to surprise such a beautiful couple and in a magnificent city. Rome is a very charming european city and has a very unspoilt feeling about it. The city steeps in history and there is plenty to see.
Our hotel was around the corner from the Trevi Fountain and the Spanish Steps. We did an open bus tour for about 3hrs, we went around twice as there was so much to see. Did Mr Zebrakat and I see everything, no we didn’t so we may have to go back again someday.
Thank you J & S for a wonderful, emotional and rejuvenating time.
On the first Bank Holiday of May in the U.K also Spring Bank Holiday. We decided to go to East Carlton Country Park in Leicestershire, with the family and our two dogs, Lottie & Dave.
Dave is a cocker & shih tzu cross (cock a tzu), a black chunky dog with cute white markings on his chest & paws. Dave is still a puppy & Lottie is 8 yrs old yet she’s a lot smaller than Dave. Lottie & Dave are fine together as they’ve already bonded.
Off they ran amongst the grass and daises. They even met some cows from the adjacent field.
Around the park there is many wooden sculptures like this one.
Adjacent to the car park is another building, with it’s mixed use is. Cafe, shops and craft workshops.
The building in the first photo of the blog known as Carlton Hall built in 1870 for the Palmer family. It’s architecture is Italianate style with French pavilion roofs.
The Hall came into the Palmer family marriage in 1408 of William Palmer to Anne a daughter of Nicholas Warde owner of Carlton Hall.
In 1920 the Hall was leased by the Firth family to Sheffield Steel. It was sold in 1934 to Stewarts and Lloyd and used for offices.
I was informed whilst I made enquires about the current use of the Hall. The Hall is owned by an Italian. It appears to be his second home and for the last 12 months he’s been renovating the building. No one knows what the intended future used is.
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”.