Blog No 144 – Rome, Italy 🇮🇹

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.

Our Hotel

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.

Trevi Fountain

Spanish Steps

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.

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Weekly Blog No 141 – Giving Back

Last month, I had a meeting with a gentleman who’s trying to drive awareness of cancer in the construction industry. His father had passed away from cancer and he wanted to give back by starting a new charity.

I had made contact with him to see if I could participate as my mother, as well as other family members and myself have all experienced cancer. I know first hand the devastation cancer has on a family and all that goes with it.

I’m hoping that this charity will be able to advise people affected by cancer, where to obtain the additional support, whether its financial, emotional or physical.

One of the biggest impacts of cancer is the financial burden, no-one is ready for the financial loss that you find yourself in. A loss of income is hard, unless you have a critical insurance policy. Not everyone considers such a policy because of the additional monthly costs, whether you’re employed or self employed, it is something that people should consider.

There are organisations that offer additional support and provide you with the tools to access further guidance or assistance, which you maybe wouldn’t be aware of. For instance, if you are a cancer patient, you’re entitled to free prescriptions. These are little nuggets of information that you may not be aware of, however it’s one less stressful item to worry about. Free prescriptions actually save me a minimum of £1700 a year, which doesn’t include my cancer treatment costs.

Hopefully this charity will endeavour to reach out to both trade people and professionals affected by cancer, provide some onsite medical screening within work time that can be followed up by a GP or Consultant. Promote cancer awareness, especially skin cancer. There is so much this charity could do, therefore I hope that I, can make a difference to someone’s life.

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 137 – 8 Paws

If you are a regular reader of my blog you will know that I’m the proud owner of 8 paws. Lottie is my cute 8 year old morkie dog from Canada and Hamish an 11 month old ginger tom cat aka Frank the tank from the U.K.

Overall Lottie and Hamish get on really well. They greet each other in the morning with a kiss. They will run out and in from the garden together. They are very content to sleep next to each other on the sofa. They know their own pet dishes.

Individually they have their own personalities. Lottie will look at me from the kitchen if she wants to go to the toilet. If I’m upstairs she will come up and give me the look that she wants to go out for a toilet break. Hamish will meow to tell me when he wants to go for a toilet break even though he has a litter tray. Hamish will then stand on his two rear paws against the back door. Both pets understand the word treat and will run to the treat cupboard door on command. Hamish will chase a paper ball and bring it back to you to throw again. Insomuch as Lottie won’t chase a ball at all. Hamish likes toys, whereas Lottie doesn’t. Lottie loves snuggles from strangers but Hamish will run away, however he will take snuggles from Mr Zebrakat & I.

Lottie is very much a chilled out dog and is very happy to watch Hamish’s antics. However there are occasions when Lottie doesn’t realise that Hamish is still a kitten. Hamish will pounce on Lottie or try to box her ears with his paws. That’s why Hamish got his nickname, Frank the Tank. Lottie can be innocently behind a door and Hamish will try and paw box Lottie through the opening.

They are both a joy to have and we would be lost without them. X

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 ❤️