Weekly Blog No 135 – Overview of 2018

 
Overview of 2018

Wow what a year, it’s been. I started the new year recovering from post op with an open scar. I had high hopes that I brought myself more time but that wasn’t to be the case. The cancer was very determined to grow and cause me ongoing symptoms. I took the stance then, that I was going to attempt to do things before I couldn’t do them anymore. Here’s an overview of 2018.  

January – Birthday Celebrations

In January I turned 49 and 4 quarters, it was an amazing birthday. I was lucky to be showered with flowers, gifts and cards and so overwhelmed by people’s kindness. The love shown to me was outstanding and still to this day, it blows my mind.

February – Scan-a-thon

February was the month that my scans started again and have remained  continuous throughout the year. It was also the month that my new bathroom was taking shape to the point I was able to use the facilities. I was no longer feeling I was showering in a telephone box unable to stretch out my arms. 

 
March – Sailing the Seas
 
March was my delayed birthday trip from Mr Zebrakat. A week on a Mediterranean cruise. It was lovely to have a week away  to relax. It was pretty much house arrest on the ship due to symptoms and of course I forgot some of my medication.  Never in my life, will I ever forgot to take all my medication again. Lesson learned for life. 
 
 
April – Welcome Hamish
 
As many of you know, we got another 4 paws to join the family. Hamish is a ginger tom cat aka Frank the Tank. He’s is still only just over 10 months old and he’s huge. He’s a great addition to the family. 
 
 
May  – Royal Wedding/Oxford
 
May was an exciting time in the U.K, as everyone was so hyped up for the Royal Wedding of Prince Harry & Meghan, the Duke & Duchess of Sussex. I remember the day very well as I had to travel to London for another scan. The roads were so clear as everyone seemed to be glued to the television watching the build up to the wedding. Meghan looked stunning and they looked so in love.  
 
We visited Oxford during the Royal Wedding. Oxford nicknamed it the ‘City of Dreaming Spires’. A city known for a prestigious university made up of 38 colleges. Honey coloured buildings of stunning architecture. A beautiful city and well worth another visit sometime. 
 
 
June – London is Calling
 
We went to London as Mr Zebrakat was attending an award ceremony to receive is fellowship membership. The ceremony was in a beautiful building and the event was exquisite. I’m so proud of Mr Zebrakat in everything he does and achieves. 
We took a quick ride on the DLR to Greenwich. Another hidden gem of prettiness and such a glorious day too. 
 
July – Renovations
 
The renovations have continued and the house is starting to take shape. The loft space, study area and store on the 2nd floor is ready for painting. The 1st floor, bathroom is complete minus a touch up of paint.  The master bedroom and walk in wardrobe is complete but we have to find our extra clothes, shoes and bags from storage. The linen cupboard shelving is nearly complete.  
 
 
Aug – Off to Weegie Land/Glasgow
 
We flew to Glasgow for a couple of days it was important for me to go with Mr Zebrakat to see places that where emphasis in his family tree. It was good for him to show me were he lived, went to school etc. We have previously been to Glasgow but it usually involves visiting people not this time. This trip was about him and for me to take things at my pace due to my difficulties. We had such a lovely time as it was 10 yrs since our last visit. 
 
 
 
Sept – Ibiza Sunshine
 
I don’t have a bucket list and I don’t want one either. I don’t feel the need to put pressure on myself to do things before I go. All I do know, is even though its hard for me to do things now, I need to push myself now before I can’t do it at all. 
 
I’ve had a lot of appointments etc and we decided to get some rest in the sun. Who doesn’t need some sunshine in paradise. I’ve never been to Ibiza and it was only a couple of hours flight so perfect for a mini vacation. 
 
I didn’t forget my medication this time and enjoy my days sitting at the poolside absorbing some vitamin d. I was all ready to begin scans the following week.  
 
October – Additional Storage 
 
I wanted to design some more storage and a bookcase in the area under the stairs. Who doesn’t have enough of storage for specific items. I have a lot of books and thought this area would be good for my paperbacks. I want to keep specific books by favourite authors but I’m also good at giving books to friends & family. I need to paint the bookcase etc but we haven’t chosen a colour scheme for the hall as yet. 
 
 
November – Petting Farm 
 
My niece had a sleepover so we took her to a local petting farm. I don’t know who was more excited me or her lol. I did love stroking and feeding the animals. Seeing my niece getting excited and Mr Zebrakat teaching her how to stroke animals. These are precious moments and it’s times like this, you do wonder how many more precious moments I will  have. 
 
 
December – Cardiff Christmas Market 
 
Mr Zebrakat and I took a trip to Cardiff before my spine appointment. There was a Christmas market on and we met up with friends who live in Wales. What a beautiful place Cardiff is, and the people are very friendly. We did an open bus tour, which is an excellent way to see key points of interest in the city. I would definitely return to this lovely place and beyond. 
 
 

 

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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 128 – Cancer Update

Cancer Update written Thursday 21st June 2018

Today I was prepared to discuss either chemo or PRRT as a treatment plan. Subsequently we did discuss them both and here is the outcome. The chemo, he felt was not suitable for me due to the side effects on my body. I think I had actually come to the conclusion already and had mentioned it to a few friends. The PRRT treatment, he is not going to proceed with this treatment at this time.

Even though the CT scan didn’t show up the Pet scan findings, the MRI did. There is multi tumours on the liver and disease in various places of my pelvic region. On my last appointment, the Consultant took various bloods and informed me today that he was concerned with the results. My liver function bloods have been rising since my last op. My GP highlighted the issue back in January, however everyone thought the cause was my recent op. Yet the results continue to rise making the results questionable. There is some other bloods that are troubling him too, for instance my thyroid. As I wasn’t under an ENT Consultant for my thyroid, he phoned someone in-house to seek advice and it was decided to increase my dosage of thyroid meds. There’s a lot of ambiguous results and he is determined to get to the bottom of the mystery.

Today he’s taken another 7/8 tubes of blood. If he is not satisfied with the results, he is going to organise a liver biopsy to see what is going on. I nearly fell of my chair because I had one in Canada prior to my liver resection op. I was very awake watching him do the procedure. The pain after the procedure was so horrendous that the doctors had to give me some powerful drugs. The Consultant did inform me that the team in London are very good so not to worry.

Follow up, he has organised another scan for 4 months instead of the usual 6 months. He wants to monitor me more closely. I should be ecstatic with the news of no treatment at this moment in time but i have a mixed bag of emotions. I’m happy that there is no treatment but sad at the same time, as no further treatment means no improvement in quality of life.

There’s no light at the end of tunnel but I’m still chasing the light.

Love to you all ❤️

Weekly Blog No 127 – My Life Continues

Once upon a time, there was a girl called Kat who dreamed of travelling the world but she was stuck down with a disease called cancer. How her life changed……

No one can prepare you for life with cancer, it’s an ongoing assault course. I don’t want pity but everyday its a challenge. It’s wasted energy, which I would have preferred to use in my career. Cancer was not my chosen career, however it is a full time job of manoeuvring through symptoms, medication, side effects, appointments and procedures.

My last blog, I did mention there may be more tests between appointments. Subsequently there was, I even had some scans last Sunday, ready for my Oncologist next week. Hopefully he will have a treatment plan, which may involve a clinical trial with PRRT. As soon as I’ve been to the appointment, I will update you within a couple of days.

I’ve also been to see my Neurologist, who would still like to stick a needle in my head. I’ve chosen the less invasive action of increasing my medication for migraines. Sometimes the medication is not so effective that the only solution is a drink of Coke or Pepsi. Don’t ask me why it works but it does.

Let’s move on to more happier events in life. Mr Zebrakat has been awarded a Fellow in the construction industry. There was an award ceremony in London and I couldn’t be more prouder of him. He deserves the acknowledgement for his contribution to the construction industry

Whilst in London, we went to the London Docklands Museum. I will do a separate blog for that visit.

Although going out is a challenge, Mr Zebrakat & I have adapted to my needs. Only now, did I had realise what precautions we actually take to make travel more accessible for me. It’s become the norm for us but there is a degree of planning & organisation. You learn to adapt very quickly and I’m sure it’s the same for any illness.

The story continues……….

Weekly Blog No 126 – Cancer Update

This was my Facebook update for family and friends.

Unfortunately I’ve been a little quiet recently as I’ve been suffering with abdomen pain and a suspected partial bowel obstruction. I had a Pet Scan beginning of May, it was first one since last year. I did have a couple of CT scans in Feb, which revealed cancer in the abdomen. Well yesterday I went to the RF to discuss my current problems and the results from the Pet Scan. Although it was a great appointment with my Oncologist, he did kindly tell me “I was a complicated case”, my reply was “I did tell you I wasn’t straightforward”.

Now Im going to tell you the findings from the Pet Scan, I have cancer in the abdomen in various places, however there is something of concern on the left side were I have intense pain. Furthermore, I have additional cancer spread on the liver. Subsequently I will have CT’s to the thorax, abdomen, pelvis and liver in the next couple of days. The Oncologist will have a multi discipline team meeting to discuss my case. I may have to have additional tests before I see him again mid June. The proposal is a tablet form of chemo therapy or a clinical trial of Peptide Receptor Radionuclide Therapy. This will be discussed in more detail, once he sees me again and I will explain it more to you.

My thoughts: Something has to done about the continuous progression, I do find that I’m constantly saying that I have progression to you all in my updates, however the fight goes on. Obviously my 4th surgery last Nov didn’t buy me time like I initially thought, hey ho there you go. If I have this chemo, there’s some nasty side effects that I don’t want to experience and PRRT is the last resort treatment for my cancer. However PRRT can slow down progression so its definitely a bonus. I will keep doing what I’ve been doing and that is trying to enjoy life. Life is so precious.

Sorry I haven’t done personal messages but there’s too many people to do and easier this way. 😍

Love to you all. ❤️

Weekly Blog No 124 – A Hard Week/Death


This week has been a hard week on so many levels. For a while, I have been experiencing problems since my last surgery in Nov. I suspect I have a partial bowel obstruction. I knew at some point I would get another bowel obstruction from either scar tissue or dandelions (tumours) but just not this soon. My recent bloods have recently shown high and low level readings, therefore my bloods etc were retested on Friday.

When speaking to my GP/FP about the situation he said “the surgeon wouldn’t operate again”. It’s not the first time I’ve heard such words and I’ve defined the odds. Nevertheless I think my surgeon would as he appreciates complicated cases and also the challenge. In reality the GP/FP and his thought process is right because I’m sure my abdomen looks like a plate of spaghetti with a few dandelions(tumours) thrown in for a pop of colour.

You all know my last op in November was not very pleasant for me and I am in double digits were op’s are concerned. I’m still super sensitive were any medical treatment is given to me, which involves a degree of pain. This week, I had hip injections to eliminate pain and boy did it hurt. I came out of the medical facility saying to Mr Zebrakat “why do I put myself through this”. The answer to my own question is, I have no choice. If I want to sleep at night, it has to be preformed. I’m also waiting for my surgeon/team to return my call, regarding a course of appropriate action to be taken. Let’s see what develops over the next couple of weeks. In the meantime, I have my PET scan the beginning of May.

Since the last op, my abdomin feels slightly distorted and even the open wounds have healed larger than a normal scar line. At this moment, I don’t necessary like what I see, nevertheless they are survival scars and no one is going to see them. After all, it doesn’t really effect me as they are just scars at the end of the day. Furthermore the scars are not on show for all to see, therefore I do embrace them as survival.

On a positive note, I have lost a lot of weight since my last op (that could be considered as good or bad thing). Now to me its a blessing in disguise unless told otherwise as I’m going back to my original shape. Obviously when the undetected cancer was growing, my body was just inflating from hormones secreted from the dandelions. Even back in the day my physical trainer from the army would see me twice a week to torture me. He could never understand why I wasn’t losing weight from the exercise regime I was carrying out. It was always an unresolved puzzle and I consequently learned to live with the matter of contention. Regardless of feeling ill at times, people nowadays can’t believe how good I look. They are seeing a slimmer me and I’m seeing a sick person. The biggest thing they notice is the weight loss, in spite of me living with ongoing daily symptoms. Nowadays my clothes can be purchased off the rack without even having tried them on. It is an excellent feeling whether you are sick or not.

This week, I was informed of two friends passing away from cancer. Both suffered from different cancers, yet they were both so brave in their own right. It’s been rough week emotionaly for me and their families. One of my friends, even though we had different cancers we had similar symptoms in some respects. It was like I was opening up the suppressed emotions of death. Don’t get me wrong I am realistic, I knew one day that I would die of the disease, still I was living in the moment. I think these emotions were brought forward due to my friends passing from the disease and me dealing with more symptoms with no possible outcome but death in time.

No one wants to be faced with death. I’ve heard the phase used before, we could all die tomorrow crossing the road etc etc still bottom line is that its unexpected, with cancer you’re dying slowing and not all of a sudden. Yes we all know we are going to die one day, however we don’t know when or how, it’s the unknown. Please don’t be alarmed I don’t think I’m there yet, in spite of medical aid, I know deep down I’ve exhausted that. Therefore organs have to start failing to work efficiently. I could use another one of my nine lives and live for years, who knows. Under the circumstances it would be normal to think this way. I’m sure I will again and again, nevertheless it’s gave me a kick in the butt to get my paperwork in order. I did have anything in order in Canada but I haven’t completed everything in the U.K.

Cancer and death thoughts are always going to dovetail with one and another. Even patients who are cured with cancer will have had these thoughts somewhere throughout their journey. People who haven’t had cancer and who know of someone who’s had cancer will immediately think death. Bottom line the thoughts are unavoidable.