It’s Thursday night. I am writing this blog. My routine was the same right now. The chemo the in the afternoon/evening, some food, TV, before 22.30 and good night.
So… it was surprise when woke and quiet sick about 01.00-ish. I very rarely have sick and I didn’t this time either. Just some nausea which didn’t amount to anything.
I felt sick again around 03.30. I am one of those people who I am happy to sick if needed, actually I am partial to a tactical chunder if required…!
However, I was finally sick 05.00 🤮 . I think my body and head had enough.
I didn’t drink really small water. All night. That he’s a really rookie mistake. With everything in my body that was really bad. Never again.
What was I thinking? Idiot. Chemo is a toxic drug. Chemotherapy damages the genes inside the nucleus of cells, it’s toxic to cells. Basically it’s shouldn’t messed with ☠️ .
I had a lot of drugs last week. Monday – Avastin. Tuesday – anticoagulants. Wednesday – Avastin again. Thursday – chemotherapy (etoposide) . Friday – chemotherapy (carboplatin) and Saturday – carboplatin again. These ones are just a section.
05.30 – 🤢 (Friday)
Saturday morning, I was at home by myself (Ava was in bed obviously). Mum, dad or Jo and everyone else we’re out doing stuff.
I had a coffee before going back to home. Once I was back home, my right hand and arm started to jerk at the start of a seizure. I can’t believe nobody was around as in there is ALWAYS someone here at the weekend.
Having with a seizure is the unknown. How is it to start? To finish? And ambulance? Hospital? Passing out? Partial or generalised? I am lucky that my seizures usually start with a warning. No that that makes them more scary.
When I have a seizure, I try and make a try to see it is actually going. Every seizure I am is some video doable. I think interesting for me team at the hospital and helpful.
The one here was after a very small seizure. I am a bit drowsy. Not anymore thanks Ava! 🐕
08.30 – 😵💫 (Saturday)
My speech Sunday wasn’t great. That said my hard on myself generally. My occupational therapy (O~) and my speech therapist (J~) often say to me.
14.00 – 😬 (Sunday)
Really looking to why MRI as I said before. Whatever they say, I am quite to have there opinion. Even if it’s amazing, 50-50 or not great news that’s fine and it means we can crack on. Who is with me?! 🙋♂️ 🙋♀️ 🙋
After the Fragmin in the 💉 (blood thinner), each time I am chemotherapy 💉 and the normal drugs every day for seizures (a lot for those). I do feel a little nervous at the moment and a bit toxic 😮💨 . Let’s see.
Problems with your vision, such as blurred vision due to increased pressure on the eyesight nerve. You might feel dizzy and you may feel as though the room is spinning. This is vertigo.
My steroids well hopefully do the trick. Dexamethasone are a hormone your body makes naturally. Side effects are less likely if you are on less than 6mg a day (-ish) I am currently 8mg. Nearly…!
It’s weird. Writing this blog I actually get enthusiastic – it’s good to learn about this and what’s going down 🤩 .
DVT (deep vein thrombosis) is a blood clot in a vein (usually the leg). DVT can be very dangerous 👻
Should be referred to hospital within 24 hours for an ultrasound scan.
I did not realise how serious/that it was bad 😬 potentially.
I had a ultrasound scan (sonogram) is a procedure that uses high-frequency sound waves to create an image of part of the inside of the body.
The scan shows whether blood is flowing normally through the vein.
They can lead to bleeding in the brain 🧠 and other things. An anticoagulant blood thinning medicine (such as warfarin and rivaroxaban) is used to treat.
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Usually platelet count is around 150,000 – 300,000 platelets in the blood.
Thrombocytopenia is a condition that occurs when the platelet count in your blood is too low (30,000). My treatment would be stopped in that scenario until the doctors were at happy 🤞 .
“I have viewed your bloods today and neutrophils are picking up and your platelets still hovering around the 70,000 levels” (that’s okay, albeit not amazing).
If you have had a blood clot in your leg or lungs, you have to be very careful. As in rushed going to hospital A&E. Be careful…
🩸 🩸 🩸
10/10/2022 – 🌞 🐕
I’m good FYI, generally I would say 3/10 currently? (1/10 good, 10/10 awful). Although I have been a little tired 😴 .
Also I have dizzy spells, as I look left and right from my vision. It’s pretty relentless but equally it’s fine currently. Again, something to think about/ask about.
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My sleeping is getting worse, due to the classic ‘steroids’ I believe. Personality I don’t want to have less drugs I need.
Previously I was on 12mg steroids (Dexamethasone) every day, then 10mg. Then this Monday I am going to 8mg (17/10/22). My oncologist Dr S~ has dropped them with everyone’s blessing 🤞 .
I’m probably more irritated by people now 🤯 . I think it’s called ‘roid rage’ – this is ‘a spontaneous anger outburst due to overuse of steroids’…! 💊
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I haven’t had lots of Sativex/cannabis recently (for about 14x days). I particularly dislike it’s taste and wonder is it worth it. I know it has its uses. The masses of people who use this, can’t be wrong…! 🤔
The view from Guys Cancer Centre 🙌
I had blood tests on Monday (10/10/22) at home (Avastin 👍 ), Tuesday was hospital for St Thomas’ Hospital for the DVT/blood clot. Which I am having treatment for every day for 6x months at least. That’s a lot of injections! 💉
Wednesday was the actual Avastin drugs (again at 4/5x hours 👍 ) . Before normal chemo on Thursday at Guys – ‘normal’ haha… 😝 (carboplatin-etoposide).
Next Sunday I have my MRI. I am really keen to have this. I have not had one since June. That’s a long time – it feels that way.
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Busy week as I said – who said it was easy.
Jx
Ps. Question.
I saw my occupational therapy and physio team recently (O~ and I~). They saw my throwing action last week. What’s wrong with it 🧐 🤔 ?
“Just to inform that you James’ treatment via Sciensus has been deferred 1 week. The nurse will be attending on 10 October for bloods and then 13 October for treatment”
A white blood count measures the number of white cells in your blood. White blood cells are part of the immune system. They help your body fight off infections and other diseases.
When you get sick, your body makes more white blood cells to fight the bacteria, viruses, or other foreign substances causing your illness.
Neutropenia occurs when you have too few neutrophils (AKA white blood cells). While all white blood cells help your body fight infections, neutrophils are important for fighting certain infections, especially those caused by bacteria:
Red cells carry oxygen around our bodies. Haemoglobin is the part of the cell that carries oxygen. If you have a low red cell count, your doctor might say you’re anaemic.
White cells fight infections has high said before. There are several different types of white cells, including neutrophils and lymphocytes. Lymphocytes make up between 18% and 42% of circulating white blood cells 🤓
Platelets help clot the blood after a cut. Symptoms of a low platelet count include abnormal bleeding, such as bleeding gums and nosebleeds.
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But his is not a common side effect from sativex. The CNS wanted to see me thanks for flagging this up.
Can you help clarify James? Is it painful at all? Is there any discolouration when compared to the other leg? Is it hot to touch?
No…that’s reassuring they said – I wanted to rule out blood clot in the leg. They highlight it (to the oncologist and I~) just for peace of mind.
Next… deep vein thrombosis (DVT). The symptoms can include:
Leg swelling ✅
Leg pain, cramping or soreness that often starts in the calf ✅
Change in skin color on the leg — such as red or purple, depending on the color of your skin ✅
A feeling of warmth on the affected leg ✅
Okay, ohhhhh… 🤞
I’m fortunately I have a clot/DVT.
🩸🫣🩸 🫣 🩸🫣🩸
It is some thing I have for 6x months…! That is a long time (it may be 3x months hopefully). It’s every day and I’ll needles which I have run – good job I am okay with them… 💉
05-10-22
“I have viewed your bloods today and neutrophils are picking up to a much better levels, and your platelets still hovering around the 70 levels.
Your platelets last week was 77 and yesterday was 71 so the oncologist want to make sure it is not continuing to drop further ahead of next week.
Has he noticed any bleeding elsewhere? Like then brushing his teeth 🦷 ? Like going to the toilet 💩? No, not yet…” 🫣
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These are only some I’m the injections. There’s a lot – every day to be fair. I realise I was so hairy. Wish I was had a wax! 🤐
💉💉💉
When I have a injections, it’s difficult do you know if they’re big/small. So… they said to say ‘squeeze a pinch’ they said…! 🤭
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07-10-22
A bruise forms when a ‘blow breaks blood vessels near your skin’s surface.
The trapped blood may cause a bruise that at first looks like a black-and-blue mark and then changes color as it heals’.
Carboplatin is a chemotherapy treatment for many different types of cancer.
Etoposide is a chemotherapy treatment (for many different types of cancer).
Why is carboplatin and etoposide given together? Carboplatin and etoposide is used to treat small cell cancers given to shrink tumors.
Here are some signs that chemotherapy may not be working as well as expected: tumors aren’t shrinking, new tumors keep forming, cancer is spreading to new areas.
White blood cells are responsible for protecting your body from infection. As part of your immune system, white blood cells circulate in your blood and respond to injury or illness.
The number of white blood cells will usually return to normal before your next treatment 👍
90.55kg – currently…
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You usually have a course of several cycles of treatment over a few months. Each cycle of takes 28x days.
Most people have ups and downs during treatment, but support is available. Some people find they can lead an almost normal life during chemotherapy.
With me, this was going to the first of 5x this would go in for January 2023.
You usually lose all the hair from your head. You may also lose your eyelashes and eyebrows, et cetera 🧑🦲 (abbreviated to which is new for me ‘et cetera’)…
You then have a rest period with no treatment. This completes your first cycle. At the end of the rest period, you start your second cycle, et cetera ☺️
So:
Day 1: 1x intravenous therapy 💉 Day 2: 2x pills at home 💊 (morning/night) Day 3: 2x pills, et cetera 💊 (!)
Then nothing until the next cycle… 👍
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As I said before, this was going to be quite a slog in all senses. I now have a glioblastoma (diagnosed in April 2022). This is the most grade primary brain tumour.
They are:
• fast growing 🙄
• diffuse (meaning they extend into other parts of the brain) 🙄
• likely to spread within the brain 🙄
• may come back, even if intensively treated 🙄
Right now, I feel good which is good. Maybe tired maybe? How are you feel really in the big scheme 🤔
Cold, not sneezing. Keep an eye on that… but everyone is the same 🥶 now summer is gone!
Right side today. Left better but still pretty rubbish. The same before. Good time with Ava in the…
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Cannabis…
How many each night? 4x currently. Last week time was he the worst… 😝 very 🤪 …? Don’t know why. It’s really tough on my throat. The jury is out…! Is it working/for me…? 🤔
Brain tumours can also be fast growing (high grade) and come back despite treatment.
Steroids can hide or change the signs and symptoms of some infections. They might also make it harder for your body to deal with an infection. This means infections are more difficult to diagnose at an early stage.
What’s a actual brain tumour? Why?
Mmm 🤔
If you bump your knee, it’s likely to swell. But what if you injure your brain?
Swelling – also called edema/oedema, and also knowns fluid retention, dropsy (🤔), hydropsy and swelling, is the build-up of fluid in the body’s tissue – is the body’s response to many types of injury.
Swelling can occur in specific locations or throughout the brain. It depends on the cause. Wherever it occurs, brain swelling increases pressure inside the skull.
He actual the actual answer. Yes swelling is different but that’s what is is the answer.
That’s known as intracranial pressure (ICP). This pressure can prevent blood from flowing to your brain, which deprives it of the oxygen it needs to function 👍
A build up of fluid may cause swelling in your arms, hands, ankles, legs, face and other parts of the body. Definitely.
You might develop: swollen or puffy face/increased facial hair.
Steroids can increase your appetite. Feeling hungrier can make it difficult to keep your weight down 🤤 🥐 🥖 …!
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Jx
Ps. these are not words but if you’re interested, have a look… 👍 (or not) …!
Tumors: Growths in the brain can cause swelling in several ways. As a tumor develops, it can press against other areas of the brain. Tumors in some parts of the brain may block cerebrospinal fluid from flowing out of the brain. New blood vessels growing in and near the tumor can leak and also lead to swelling.
Headache
Neck pain or stiffness
Nausea or vomiting
Dizziness
Irregular breathing
Vision loss or changes
Memory loss
Inability to walk
Difficulty speaking
Stupor
Seizures
Loss of consciousness
If you’re having trouble concentrating or making decisions, some simple tests might be helpful in figuring out what’s wrong.
Your ability to think, understand, learn, and remember (cognition)
Memory
Motor function (walking, coordination)
Perception (you see or read)
Problem-solving and decision-making
Verbal ability
Age at diagnosis:
The outlook is often better for people younger than 40.
Position in the brain:
The position of the tumour may affect the type of treatment you might have. For example, surgery is the main treatment for most types of brain tumour. But some parts of the brain are more difficult to operate on than others. These include areas near the nerves that control your sight (optic nerves), the brain stem, spinal cord, or areas close to major blood vessels.
Sometimes the tumour may be in an area where it isn’t possible for doctors to operate on. For tumours in these areas, radiotherapy or chemotherapy may be better options for treatment.
Size or shape of the brain tumour:
Large tumours or those where the edge of the tumour is not clear may be more difficult to remove.
Grade of the tumour:
The grade is one of the most important factors for some types of tumours. But for others, the grade is much less likely to predict how the tumour might behave. Generally, fast growing (high grade) tumours are much more likely to come back after treatment than slow growing (low grade) tumours.
Different types of brain tumours respond differently to treatment. Some types are likely to spread into the surrounding brain tissue. This may make them difficult to remove with surgery.
Type of tumour:
The cells look very abnormal. These are the fastest growing tumours. They often come back after treatment and can spread to other parts of the brain and sometimes the spinal cord. You usually have treatment with radiotherapy and chemotherapy.
Grade 4:
Survival for all types of cancerous (malignant) brain tumour. Generally for people with a cancerous (malignant) brain tumour in England:
40 out of 100 people (40%) survive their cancer for 1 year or more
more than 10 out of 100 people (more than 10%) survive their cancer for 5 years or more
I’m in at Guys again which is nice. It’s in for a private room but the Avastin working it’s great. The money is this the worth if the drugs are working 👍
Thank you too my family and all my friends and workmates who have who contributed. Thank you ❤️
We’re all about 5x hours? Maybe more little. 3x/4x is actually on treatment today…
Although good job I like Custard Creams…! And Bourbons. And Hobnobs. Multiple 😜😜😜 chin chin chin…!
15-2022
I am going 2x weeks for the at the moment (Avastin).
That possibly becomes the 3x weeks once I am doing good. I honestly it’s a different using this drugs and they are happy.
15-2022
I have with having the speech. I still feel really good. I know speech is not that but it is massively better than before. Unbelievable.
This is a different name but it’s before. Before was the Bevacizumab and now is the Avastin. I promise I am going got it before.
I have people in Guys who say it’s unbelievable. Well done. Although it’s probably the drugs…! Maybe not.
Avastin – trying to remember…!
This people are my O~ (occupational therapy), J~ (speech therapist) and I~ (physio). They’re really good and genuinely brilliant.
I got a new handrail on my stairs, a foot support to help me walk and a seat for washing in the bath 🛁 .
FYI I am physically disabled. Only my left side fully works. I was working on 10th March (2022) at Twickenham…!
Thank you 🙏
17-2022
The cannabis is working I think. I am having 3x three times which each day. It definitely works I think but I want to more. I do lots of good in the night as in 7/8/9pm.
17-2022😵💫😵💫😵💫 – L – R – 😵💫😵💫😵💫
Once this chemo this is finish this time I will back on the cannabis. I think I need to have more.
Right now, I having the Avastin, cannabis and the chemo is a bit too much possibly?Although is my decision, you only live once 🤔 …!
There are a couple of cannabis-based medicines now licensed (UK). These include Epidyolex and Sativex (and also Nabilone – a synthetic cannabinoid).
This is Sativa, a cannabis spray. I am going to give it a try. Nice 👌
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Specific cannabis-based products are available on prescription as medicinal cannabis. These are only likely to benefit a very small number of patients.
Few people in England are likely to get a prescription for medical cannabis.
Sativex is cannabis-based medicine that is sprayed into the mouth (and I can report that its taste is not pleasant 👅 😖).
It will not get you high, because it does not contain high levels of THC (tetrahydrocannabinol), the chemical in cannabis that makes you high.
It is licensed in the UK for adults with muscle spasticity.
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Spasticity is a condition in which there is an abnormal increase in muscle tone or stiffness of muscle. Might interfere with movement, speech, or be associated with discomfort or pain.
Spasticity is found in conditions where the brain and/or spinal cord are damaged or fail to develop normally; these include cerebral palsy, multiple sclerosis, spinal cord injury and acquired brain injury including stroke.
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There is some evidence medical cannabis can help certain types of pain, though this evidence is not yet strong enough to recommend it for pain relief.
In some cases, however, it may be prescribed for pain as part of a clinical trial.
CBD and THC can affect how other medicines work.
A prescription for medical cannabis would only be given when it was believed to be in your best interests.
It’s expected this would only apply to a very small number of people in England.
The government has no intention of legalising the use of cannabis for recreational (non-medical) use.
Possessing cannabis is illegal, whatever you’re using it for.
That includes medical use cannabis products unless these have been prescribed for you.
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Sativex is available in a number of countries as an unlicensed medicine, which enables doctors to prescribe the product to people who they consider may benefit.
In 2019 it was proposed that following application of the spray, Sativex is washed away from the oral mucosa by the saliva flow and ingested into the stomach, with subsequent absorption from the gastro-intestinal tract.
Sativex is a combination drug standardised in composition, formulation, and dose. Its principal active cannabinoid components are the cannabinoids: tetrahydrocannabinol (THC) and cannabidiol (CBD).
Each spray delivers a dose of 2.7 mg THC and 2.5 mg CBD.
Many people with MS cannot receive Sativex due to local NHS resistance to its funding but, in August 2014, the NHS in Wales agreed to fund Sativex for people with multiple sclerosis.
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How are you the same? Fine I think. I’ve every night for 5x nights now – hardcore(!)
But ‘whitey’ this funny…
…‘whitey’ an undesirable reaction to smoking cannabis common amongst lightweights and first – time tokers…! 🤤
…
Jx
Ps. Think my mum might try it tonight…! 🤤
In the Holland 🇳🇱 7x years ago, my mum was unbelievable 🤩 . Very good on cannabis. She’s unbelievable…! 🤪
~ astrocytomajames ~ 