Merry Christmas Everyone.
I will be blogging over the next week including a medical update.
Merry Christmas Everyone.
I will be blogging over the next week including a medical 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. ❤️
Photo Credit Mary Berry
The other day I attempted to make fruit scones to have with jam and clotted cream. I chose Mary Berry’s recipe and added some photo’s of the different stages.
I also used mixed fruit instead of sultanas and used 100ml of milk and 50ml of cream. Thank you to P for the tip of using cream for a softer scone.
• 75g (2 1⁄2 oz) butter, chilled and cut into cubes, plus extra for greasing
• 350g (12oz) self-raising flour, plus extra for dusting
• 1 1⁄2 tsp baking powder
• 30g (1oz) caster sugar
• 75g (2 1⁄2oz) sultanas
• About 150ml (5fl oz) milk
• 2 large eggs, beaten
Preheat the oven to 220°C (fan 200°C/425°F/Gas 7). Lightly grease a large baking sheet.
Put the flour and baking powder into a large chilled mixing bowl.
Add the cubes of butter, keeping all the ingredients as cold as possible.
Rub in lightly and quickly with your fingertips until the mixture looks like fine breadcrumbs.
Add the sugar and sultanas. Pour 100ml (31⁄2fl oz) of the milk and all but 2 tablespoons of the beaten egg into the flour mixture.
Mix together with a round-bladed knife to a soft, but not too sticky dough, adding a bit more milk if needed to mop up any dry bits of mixture in the bottom of the bowl.
Turn the dough out onto a lightly floured work surface, lightly knead just a few times only until gathered together, then gently roll and pat out to form a rectangle about 2cm (3⁄4in) deep.
Cut out as many rounds as possible from the first rolling with a 6cm (21⁄2in) cutter (a plain cutter is easier to use than a fluted one) and lay them on the baking sheet, spaced slightly apart.
Gather the trimmings, then roll and cut out again. Repeat until you have 10 scones.
Brush the tops of the scones with the reserved egg. Bake for about 10 minutes, or until risen and golden.
Remove and cool on a wire rack.
Cooks in 10mins.
Approximately 10 Servings.
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 ❤️
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. ❤️
Happy Friday Everyone.
I’m just having some medical issues. My medical team and I working together trying to resolve the unexpected problems
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.