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 ❤️
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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 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.

Weekly Blog No 96 – Life Continues

I thought it’s been a while and I should give you an update and elaborate what I’ve been doing in the mean time. 

I’ve been missing in action for a while now because of the challenges of carcinoid cancer. It’s been an  ongoing obstabcle course and I’ve had to climb over walls, swing on ropes and jump through hoops. Only, my adventure is not the wonderful experience you would imagine. 

My new Family Physician has been excellent and on the ball referring me when there has been concerns and there haven’t been many. I had scans, tests and Specialist appointments. On one appointment my medication intake increased a further 5 different meds due to my symptoms. The medical hamster wheel never stops for me.  

Next week I have an endoscopy and the following week my GA68 cancer scan. My tumour marker blood tests that have always remained normal even though, I’ve had 3 cancer ops. My tumour marker result has done a long jump out of normal range with a personal best and doubled within 6 months. Well done cancer, what are you telling me now.

Here’s comes the honestly part. There has been occasions were I have thought is this my downward spiral. Do I seriously need to get my life in order before I decline anymore. My life was in complete order in Canada but isn’t so complete in the UK. It’s something that I need to address. I have ideas but it needs to be down on paper.  

I’m not the person I was and my life has changed so much. I miss work but I do understand why I can’t work. Furthermore I’m don’t have the freedom I once had but I’m also grateful for the freedom I do have. Going anywhere is a challenge, yet you have to try to get to places if you can and Mr Zebrakat is very supportive and never a whinge is heard.

I’m not a crier as a rule, however I did end up crying to Mr Zebrakat a few weeks ago when nothing would take the pain away. It was a Sunday too, so not everyone was accessible for assistance. On the Monday my butt dart nurse saw I was out of sorts and crossed the procedure line to get me assistance. A box of chocolates is in the waiting for my next visit. Thank you so much to my nurse and her diligence.

You do start to question things, for instance, is this it, or if your deemed to have an extended life, how can you possibly maintain symptoms like this every single day. I now understand why people want to throw in the towel. Trust me it’s very easy to comment on these things, when you haven’t physically experienced it yourself. Therefore please be mindful when discussing people’s health issues. I have personally made comments on people’s health in the past, saying I don’t understand why people don’t try more or I don’t understand why they are doing that blah blah blah. Speak to the person and get their prospective on the situation.   

Yes it’s wonderful having a life but no one wants to be feeling horrible everyday. We have all had a viral infection at some point and you feel so terrible. Imagine that feeling most days, it’s the only way I can explain some of the symptoms/situations. Don’t worry, I’m not giving up and my Specialist is working hard to control my symptoms.Thank you Prof C.  The reality is that I may look ok but truth is my life is tormented by my cancer. 

My priorities have changed in life, what may have been my 1 – 5 year goals have immediately become my current goals. I’ve been fighting this for 4 years on Mothers Days (UK), which is a wonderful achievement. Even longer if you count the years it was growing inside me before being diagnosed. 

I will continue to fight and challenge my body. I will keep reading and thank you to Auntie P for the continous supply of reading material. I will be lost in Victorian times for a while. Thank you to K for keeping me up to date in showbiz gossip.  

The house renovation plans are nearly completed for Local Authority submission, well done Mr Zebrakat. Roll on brick dust. 

The garden is now missing a silver birch tree, conifers and  a vine. Hello, fresly painted bird table and proposed space for veggie boxes.  I have sowed some seeds indoor seeds for bedding plants and veggies. A new skill for me and I’ve been learning from others and a big thank to Lady T for the beginners guide. 

I’ve also being working on Mr Zebrakat family tree and mine at times. His is my priorty, I’ve rechecked the facts that I have gathered to ensure that I’m following the right line. It’s amazing how people attach your family members to thier family tree. Clearly assuming that their family member is married to yours.You can’t make assumptions, you have to get the certificates to double check the info provided is correct. The Scottish certificates tend to give a little more info, like marriage date of parents and addresses making the trial a little easier, although I will be crossing over to Ireland now. I know with my family tree, Ireland is a little harder to trace and I believe a lot of records were destroyed by the British. However on a good note, Mr Zebrakat was able to reconnect with a 1st cousin through my research. #happydays.

Althrough i’m problematic times and I may question things, I’m still proactive in one way or another. I would to thank Mr Zebrakat, my family and friends for keeping me going, you know who you are. #specialpeople. 

Weekly Blog No 65 – Complacent

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I think we have all been complacent sometime in our life’s, whether its in relationships, work environment or daily routines. Personally I think I’m guilty of all of the above in one way or another.

Today I realised that I have become complacent again but this time with my health. I had got so comfortable with my cancer and didn’t appreciate the impact that it could change at some point. Let me explain, I’m very aware that my cancer can cause reoccurring tumours and I’ve had 3 ops to prove that. Furthermore I know my liver still has tumours and maybe some others elsewhere waiting to be spotted by the Gallium 68 Pet Scan. However in the last few weeks I have been getting swollen lymph nodes in my neck and the first course of action would be a scan. Its been a persistent problem for approximately 4 weeks. As I am due for a week of scans and tests at the beginning of March in London, it seems very sensible to wait.

On Monday, I returned to my Family Physician (Dr I), who I will say is lovely and I have fell on my feet again with my Primary Care Doctor. I thought I would never achieve the relationship I had with my Family Physician (Dr K) in Canada. Dr I, suggested that as I had to wait a few weeks for my scans that I should see an ENT Specialist. This was a sensible move as I have no sign of fever or infection. Today I was on the phone with Mr Zebrakat when the land line rang and it was Dr I. Never in a million years did I think it was my Dr, but she called to advise me that the Specialist felt that as it was likely to be cancer, I should be seen by my Oncology Specialist. I called my Oncology Team and I’m going to wait for my scans, however in the meantime, I have to go and see my Dr again and maybe have another type of scan.

Now anyone who knows me, knows I don’t waste time on worry, its wasted energy. Yet today I realise that I could have a secondary cancer. This is were I had become very complacent, never in the slightest had I or I will say I, would have ever considered the possibility of getting a secondary cancer.  What’s stupid about that statement is, that I know of people who have a secondary cancer. Did I think I was invisible.

Surely cancer should be enough to be on guard all the time. This is a lesson to everyone you can’t be complacent were your health or cancer is concerned. I will keep you all updated and continue to pass my time attempting to paint when I have the energy.

 

 

 

 

 

 

 

 

 

Weekly Blog No 40 – Preparation for International Move 

International moving is a whole new learning experience, it can be stressful, joyful and expensive all at the same time.  This is our fourth international move. UK to Canada, Canada to UK, UK to Canada and finally Canada to UK. Some might even call us the boomerang Brits.

First you have to make the decision to move, people are moving everyday for different reasons, it can for family, employment, a change of lifestyle or seeking a new adventure. The move can be considered as stressful or a walk in the park but it’s down to the preparation. One thing I have personally learnt from the process is that there is never enough hours in the day. Ideally a 30hr day would be perfect rather the usual 24hr day. Here are some of the things I’ve had to consider.

Furniture & Personal Possessions

 Photo from the sale brochure of my home

Shipping can be very expensive and you have to make the decision, is it really worth all the cost. I have experience with 20ft and 40ft containers, however this time as I chose to do groupage (shared container) to keep costs down. Due to my own personal experience, Canadian furniture is to big for British dwellings, therefore I made the decision to sell most of our items. British furniture is cheaper than Canadian and more suitable for British properties. Although I did have beautiful pieces I’m able to let it go to keep costs to a minimum as I do have wonderful memories.

Live Stock (Also known as Lottie aka Velcro)

 

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This little bundle of cuteness also needs preparation. There are hundreds of people flying live stock and the cost is incredible.  You have to use a pet agent to fly with certain airlines and I have used the same company and airline 3 times. In order to fly Lottie into the UK you have to have a microchip, than rabies injection and tapeworm all within the proper time scales. If you follow the correct procedure you can avoid quarantine in the UK for 6 months.  Lotiie will be on the same flight as us, however she will be below our feet in the hold hopefully having a fabulous snooze.

Cars

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 We have manage to sell one car to our friends, however one week to go we are still are stuck with our biggest four wheel investment. Friends have offered to sell it on our behalf but cars are just not selling in the downturn. We have a plan B to sell it back to the garage and guess who has the biggest smile, not us.  We can walk away bearing no more cost and cutting all ties.

The Cancer Patient 

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I’m still recovering from spine surgery, earliest indications are that I’m doing well. Hopefully the spine specialist will have the same opinion this week when I see him on my post surgery appointments. My cancer symptoms are causing me horrendous problems, therefore I’m lucky to have my husband around. My family physician has given me a prescription to aid me through the flight. I have my cancer treatment this week so I have 28 days to get my next treatment in place.

Saying goodbye to my family physician was hard, I know I have mentioned him in my blog before but he really was a very compassionate person. The respect was mutual and I hope that I make the same relationship with my new GP. Thank you again Dr K.

I do believe I’m armed with all my medical notes and discs in preparation for the UK medical journey. The word nervous is not usually in my vocabulary but its rearing its ugly head. I’m nervous to be honest due to experience, nevertheless I’m up for the challenge.

Saying Goodbye 

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We have had a stream of visitors (friends) coming into say goodbye. There has been hugs and tears, yet I haven’t allowed myself to go there yet. If I do, I may never stop and I won’t be able to deal with the task in hand. Come next Saturday morning when there is nothing else to do, I will have tissues close by as I know that’s when it’s going to hit me.

My next blog will be in the UK, so this is my last Canadian blog. Goodbye Canada.