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”.

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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. ❤️

Weekly Blog No 94 – Bullet Journal Update

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Sometime ago I mentioned that I was going to commence a bullet journal in Weekly Blog No 77. I failed my attempt after a couple of months and here’s why.

  • It was time-consuming drafting and redrafting pages.
  • At times my pages look quiet childlike and although they were organised, I didn’t feel professional when pulling out my bullet journal to schedule an appointment.
  • I was never ahead with my monthly calendars
  • I was constantly going backwards and forwards, flicking through with pages. As my monthly calendar was always between other pages.
  • I was becoming stationary obsessed for washi tape and colour pens etc

I want to explain to everyone even though this was not suitable for me, I do like the principal of a bullet journalling. I had no problem filling in the content of the pages, it was setting up the pages that was time-consuming. With the knowledge that I gained along the way. I have maintained a moleskin book for recording various other important information to me, which is my one stop shop.

I have listed books read including specific authors pages. Now when I’m out shopping I can remember, which ones I have read. I recently created a moving out list of tasks, which I’m able to refer too. I have a yearly record of energy bills etc so that i can track the costs. I have an instant list of medical appointments to refer too. Lists of birthday gifts given and received. All the things you don’t remember necessary or even log. Yes you may log some of this stuff in a diary, but youre not going to keep 2 years of dairies in your handbag to retrieve the information. As you see, I’m able to utilise my moleskin in a different way, all inspiration from a bullet journal.

I have seen some amazing bullet journals on social media and kudos to all those people for their effort, discipline and creative genes. Thank you to the bullet journal community.

Weekly Blog No 70 – My Unsung Hero

 

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This weeks blog is about the unsung hero. My No 1 unsung hero (as I have a few) is Mr Zebrakat aka J my husband. I am very biased to be honest were J is concerned. I guess I’m his number 1 fan.

J is always at my appointments and this week without fail he was there again supporting me. I’m never nervous about scanning and testing periods, however J manages to make them fun by his constant wit. He really is a funny man. He never complains about anything and he’s there to hold my hand, my coat or whatever I need. I always make sure I thank him to show him my appreciation although I’m positive he would  appreciate an Audi more.

I always say to him, your life is consumed by me, whether it’s assisting in some aspect or taking me to appointments. His response is, you would do it for me. That is true but no one wants to put someone in that place. J has never made me feel a burden or an inconvenience in his life.

I’m quiet unique that I am strong but J makes me feel stronger because of his support. I don’t know where I would be without him to be honest. I do feel we all have an unsung hero and mine is my husband.

Thank you J for always be there for me and please believe me when I say, I do appreciate every morsel of you. ❤

Who’s your unsung hero?

Weekly Blog No 26 – Overview of 2014

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As 2014 is coming to an end, I thought I would give you a snapshot of my life in the last 12 months

January

Just 2 weeks into our new home I was still unpacking the boxes from our British & Canadian homes. I hadn’t seen some of the stuff since it was packed back in January 2009. Still to this day I’m unpacking boxes and saying to myself I forgot I had that or that won’t work in our new home.

It took 9 months from purchasing to entering our new home. We moved walls, extended areas, chose finishes from wall finishes to light fittings.  We had commenced the process of purchasing of our home when I was rushed into hospital (March 2013) for an emergency op. We hadn’t signed the contract with the builder yet when I got my cancer diagnosis. I’m sure some people at the time must have thought we were mad to buy a new home when we were going into the unknown of cancer. We have all been exposed to cancer and the outcome is not usually good, why would you make such a big investment. At the time we did explain to people that life does go on and to this day we don’t regret making our decision to continue as we have already enjoyed 12 months in our new home.

Towards the end of the month, I was looking forward to my liver resection operation so nil by mouth on my birthday was absolute joy. Lol. This was the first time I can honestly say I was scared, I don’t know if it was fear of the unknown or it was the fact I had 2 very experienced surgeons operating on me. I had previously had 2 major op’s in the last 9 months. (A bowel resection and spine fusion) so being a patient again was getting exhausting, nevertheless you are always grateful for the care and the thought that this is extending your life.

I was very fortunate to have daily visits from a close friend who worked at the hospital. She would visit everyday armed with pictures of Jason Statham – Actor and words of wisdom. It was better than medicine, she would always come with a smile and still to this day she is constant in my life. My care team would look forward to my evolving noticeboard, which had me and few other people giggling with laughter.

One nurse that cared for me sticks out in my mind. She came into my room and said to me ” how can I make your day better”. I shall never forget those words as long as I live

February

Post op recovery was slow, nevertheless I was getting there. My husband was taking good care of me as always, ensuring I was resting and eating. Friends and family were a huge support, however I was finding it hard to sit still and recover. I had far too much time on my hands so I was already planning and relocating furniture around our new home in my head. It can be dangerous for my husband when I have too much time to think because it involves him doing a task lol.

March

My recovery seems to be very slow or I am very impatient. I was starting to have concerns that I was not 100% right but it was still early days and doctors thought it was post op recovery, in the meantime scans were being organised.

At this point I was ready to drive again after not driving for 12 months due to health restrictions. My husband &  I decided to buy an SUV known as the black beast. I wanted to achieve independence again and attend my continuous medical appointments. Freedom is huge, most of my life I have driven a car and was considered as one of my work tools, therefore it was very fulfilling to drive again. The black beast has been a blessing in disguise, a cliche I know. Today I consider the black beast as one of my therapeutic tools. A car is something we all take for granted, I really appreciate mine and the inventor of motor vehicles, a complete genius.

This month I tried meditation for the first time in my life, I would recommend this activity to anyone who is looking for some form of relaxation.

April

In April, I loss my Uncle to cancer. I was so overwhelmed by grief for him and his immediate family. He was a very special man and had impacted my life hugely. I’ve experienced loss before but this was the hardest to date. I still think about him often and I am constantly reminded of him by the little things in life. He will be proud that I’m still maintaining a positive attitude and attempting new cooking challenges. Uncle T, my new cooking ingredient is coconut flour, let’s see what develops and feel free to giggle at my attempts. I will not be conquered by the coconut lol.

I went to the Rocky Mountains this month even though I was still experiencing some discomfort. It was lovely to see the mountains, get some fresh air and see a sprinkle of snow. Since being diagnosed everything has more meaning, for example familiar smells bring back memories, which I would of probably ignored before. Whilst in the mountains I got a familiar smell that brought back memories of Ireland. Madness I know otherwise I have psychic nose

May

In May, my husband and I started to plan the basement layout for future development. The plan is to have a furnace room, store room, bathroom, 4th bedroom/craft room and recreation room. In the interim my husband started to plan the boundary fencing to the rear garden, whilst I started to draft a garden landscape design.

My cancer symptoms continue to be persistent, however nothing showed up on recent scans. I knew this was not just post op recovery, there has to be something said about the saying “we know our bodies best”. It was time to go back to my family doctor who is very compassionate, and when he saw me, he sent me straight to hospital. To cut the story short,  I had another emergency op and the pathology report confirmed additional cancer spread. The moral of this story is, go with your gut when you know there is something wrong.

I was operated at my local hospital and was lucky to have another close friend working in the facility. She would bring me a cup of tea in a china cup everyday rather than a plastic cup to help my recovery. I have amazing friends in my life and without them my life would be so hard.

June

My husband was organising fencing with our lovely neighbours. I was still recovering from my recent op and enjoying further rest until i had to rush back to UK. My mum was rushed into hospital even though it was not the ideal circumstances to rush home for, it was great to spend time with my family. My brothers took good care of me, however saying that they ripped me to bits as brothers will do. I’m still to this day laughing at things they had said to me. They only said things they knew that I could take, trust me it would kill some sensitive soul but I have a hard skin. I’m sure they had fun too and we all created some memories.

My mum is much better but needs to learn the art of rest and to look after herself.

July

My husband & I decided to start on the garden landscaping design first rather than the basement so that we could entertain and relax in the sunshine for the remaining summer months.

July was also the month that I learned my cancer was progressing rapidly, I was given a lifespan of 1 – 3 years. Everyone reacts differently to this type of news therefore it not surprising to most people that I said life goes on and a bucket list is not for me. I still feel a bucket list is not appropriate for me and I will continue life to the full within the limitations of my health.

August

The garden was taking shape and I was able to enjoy the sunshine . Lottie would sit on the sun lounger with me basking in the heat. She is a sun worshipper for sure  It was an exhausting month for me with tests and scans, which appears to be my new life

September

No medical visits until mid September, yeah. I was able to enjoy a couple of weeks off with my husband, who took some pre booked vacation leave. We just relaxed and enjoyed our time together.

October

We decided to go to Banff for Thanksgiving to get into the spirt of the holiday. The hotel was amazing and we had a great time, however when we were about to collect the car, I took a turn for the worse and travelling home was not an option. It was the first time I had seen the fear in my husbands eyes, I will never forget that image. Being the man he is, he went into reactive mode, do I take her to hospital or organise another nights accommodation. I didn’t need a hospital just the comforts of hotel room for some rest. It was clear to both of us that my symptoms were not improving but getting worse and this needed to be addressed with the oncologist.

I have made it known on numerous occasions that I appreciate my husband so much, nevertheless he lives my life. What I mean is, he not only accommodates my illness he lives my illness too. J I love you and will always love you as Uncle T would say we are soul mates  ❤️

November 

A visit to the oncologist to discuss our concerns and discuss the latest results. More tests, scans and procedures were ordered before the next appointment in December.

This month I was starting to receive more food parcels than the Salvation Army. I can’t thank my family and friends around the globe who have enchanced my taste buds with the flavours of home.  The only problem now is I can’t drink Canadian tea, it’s like dishwater compared to Irish tea. Dishwater is no longer appealing to my taste buds. I’ve clearly been spoiled by the black stuff called strong tea.

December

My oncology appointment proved my suspicions of more cancer on the liver and wherever else it is lurking , the little pesky devils. My oncologist has increased my cancer injection to 2 every 28 days, oh my 1 butt dart was enough without 2 butt darts. I’m glad that the dart has been increased because it may improve my symptoms, which will improve my quality of life I hope.

Christmas we stayed at home but did visit a few friends over the Christmas period and New Year we will be certainly celebrating with friends.

Final comments

J and I have achieved more than we had anticipated this year under the circumstances. I am now in my 20th month since diagnosis and to be honest I didn’t think I would see this far with an incurable cancer. I don’t know if it is determination or pure luck. In 2015, I intend to continue to fight cancer, attend a family wedding, and give time to personal activities.  😄

(Written in UK English)