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 109 – Net Cancer Awareness Day

Spread the word on your social media

Today is the day to share this image as it is Net Cancer Awareness Day #raisingawareness #plsshare #netcancer #letsgetthemessageoutthere

Weekly Blog No 108 – Cancer Update 


Cancer Update.
Last week I seen the surgeon in London and he further agrees that I need surgery. The goal is another bowel resection and ovary removal. If he feels a resection is not viable then an external bag is the only option. The surgery is mid Nov because we are trying to get my blood pressure under control. (Cancer related) I did scare them a little with a heart rate 115 and repeat readings not much different. He then sent me to pre admission today to avoid additional travel.

 I think I had a full M. O.T. including swabs, bloods, ecg etc etc. Once the nurses had finished I was sent to the anaesthetist who was also very lovely and fully aware of the problems my cancer has caused. Therefore as an extra precaution I will go in a day early for special meds and after surgery I will go into a high dependency unit or icu for at least 24 hrs. Overall it was a successful day.
Roll on operation freedom. 🤞<<<<
gt;

Weekly Blog No 97 – Margate, Kent

 

IMG_0130

Margate

As you know, I have a number of tests coming up, therefore Mr ZebraKat and I decided to go away for a weekend. Its been over a year since we have been away and we certainly needed a change of scenery. My next procedure was on Tuesday, therefore it was lovely to feel just like another tourist for a few hours.

I am ashamed to say I have not seen much of the UK for breaks or holidays, I always headed out of the country. Its UK’s bonus that my illness prevents me from heading on a plane to some exotic location.  Hopefully in the coming months, I shall attempt to explore more of the UK, forgetting my illness. I went to Margate, drove around Broadstairs & Ramsgate and visited Canterbury. Consequently I am going to cover over a few blogs. I am no way near even an amateur photographer but you will get the picture. Excuse the pun.

Margate had a lovely sandy beach and was pretty empty when we arrived, however on Saturday it was a different story with many visitors.

 

This beautiful building is now used as the Tourist Information Centre, the elegant building was built-in 1812 for Margate Pier & Harbour Company.

IMG_0004 (2)

Droit House

Dreamland is an amusement park, which was closed due to refurbishment. It’s a shame as there was a roller disco in the park and I would have given that a go.

IMG_0018 (2)

We had a light lunch in this 70’s feel Italian Cafe, the food & coffee was amazing, if I was to go back again i would call into this cafe.

IMG_0006

Cafe – High Street

The old town was a mixture of cute shops and buildings. I do love the period properties, you can imagine the history.

Period properties around the old town.

The Old Kent Market is a restored building of independent sellers selling food & crafts.

IMG_0032

Old Kent Market

Next we took a look at Morris Dancers outside the Turner Building. Morris Dancers are English Folk Dancing people and has been recorded in history since 1448. The Turner Building will be the next blog.

IMG_0035

Morris Dancing

Weekly Blog No 94 – Bullet Journal Update

wp-1486155079529.jpg

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 27 – Welcome 2015

image

This year is all about self development and to achieve some new personal skills.

image

Firstly, I want to accomplish some new cooking skills. I have purchased the tools, a kitchenaid food processor and food mixer. My goal is to use as many unprocessed ingredients as possible and develop some healthy dishes for me and my husband. I’m not trying to change my way of eating as a result of the cancer as I have previously spent thousands on natural therapies and treatments prior to my diagnosis. My opinion at the minute is not a good one in that respect, I have invested in my body yet I have an incurable cancer so I’m struggling how it was beneficial to me. I do believe eating sensibly is beneficial for your body but not as a cancer cure. Perhaps my line of thought may change over the coming year.

Secondly, I would like to explore music, i don’t know whether to learn a new musical instrument as I can play a few or continue lessons in music theory. I loved music theory at school and wish that my school had offered the subject as CSE/GSC(High School) qualification. The fiddle seems appealing or perhaps I will do both. Time to investigate where to learn the fiddle.

image

Thirdly, I want to paint or craft in one way or another. Ideally it would be nice to earn some money from my existing skills.

image

Fourthly, I would to continue my writing skills as I do enjoy to writing. I have been writing for nearly a year and the feedback has been wonderful. Thank you to my readers, I shall continue to write with enthusiasm.

image

Fifthly, I would like to travel, nowadays this would be a huge achievement. I can’t help but hope that my cancer treatment will improve my quality of life thus allowing me to travel to see family & friends and to make new memories.

Hopefully in December, I will be able to inform my readers of my achievements. Do you have any personal goals his year?