Right now, everything from this blog was from last week #79…
The blog takes a long time – about 24/48x hours in total? Maybe more (2x weeks).
I know that is a long time 🤓 but it’s interesting for me.
After this these random messages were from the last blog. As I said, it’s very difficult sometimes to do but I like it. Although it is annoying sometimes…! 😤
Okay… a lot has happened since last time. I’ve been in hospital for 6x days. I am still here. I had 4x seizures on Friday.
Maybe going home today…but maybe not…
Chemo having Tuesday means I am finished on Thursday.
Tuesday at Guy’s AM – all good, when there isn’t too going before 😮💨 .
Tuesday PM – not as good and more and more and more. No sick but a dream, like last before, is this real?
Weds AM – sleep all day. Like before last month.
Weds PM – from 2000 asleep. Really tired. The worst day Weds because that’s it’s everything 🥴 😵 🤢 .
Thursday AM – okay.
Thursday PM – better. Have a walk!
I think I should be in better every day? Remember the water…! 💦
Dr S~ was very happy with my progress last time and my scans. She’s a (and very good she is) 🙌 .
I am seeing Dr O~ next week and the Avastin. I think he wants how I am doing and I am not sure what to say. I am not sure at the moment but this is Friday and see how they’re the weekend goes. I feel like initially was brilliant, it probably is the same.
It’s about 11.00am and I am having chemotherapy this morning (etoposide, the proper name). Hopefully this is 4/5x hours at Guy’s.
I have 2x days having more chemo (carboplatin, the proper name) and that’s another cycle done. It makes it so easy…! 🥴
My dad is here (at Guy’s) but he’s going to someone pie and mash from M.Manze afterwards. Lovely! 🥧
It’s a tradition for us, definitely have after Guy’s treatment. This is was after radiotherapy in 2018. A lot has been changed since then but the pies are still amazing 😋 .
Which means: (1/5 – today/or close)
COVID-19 – it seems widespread again in the hospital. I wonder when is it going finish. I guess it’s never right now.
I got some ‘COVID-19’ symptoms last week. Feeling tired, aching body, headache etc. I slept morning until 1300 – I never do that…! My head was hurting and I was very dizzy 🤐 .
*** My tests have been negative FYI ***
Although it was here for 24h feeling awful then another 24h/48h better fine/over it (COVID-19). Fatigue is a common symptom of many conditions. I didn’t realise it’s harsh.
Which means: (2/5)
I was going to Guy’s on home Sunday (for the ultrasound at Kings). I was 50-50% to actually have the scan.
I am very happy I did now because it was a beneficial result for me 👍 (if you want from hospital).
Which means: (3/5)
Hopefully see my blood team soon. Hematologists treat all kinds of blood diseases and hopefully this will stop blood chat for a few weeks (no abnormalities).
In some situations, the blood results (if negative) could have to stop my chemo treatment 😳 . I am happy to report the bloods and looking good right now 😊 .
Which means: (4/5)
The ‘benign paroxysmal positional vertigo’ (BPPV) is a sudden sensation the inside of your head is spinning 😵💫 .
It is usually triggered by specific changes in your head’s position. This might occur when you tip your head up or down, when you lie down, or when you turn over or sit up in bed.
I was intrigued so I went to see a ‘audiologist’. There is as procedure called ‘epley manoeuvre’ head’s position related to gravity.
These contain crystals that make you sensitive to gravity and these crystals can become dislodged. When they become dislodged especially while you’re lying down which is what makes you feel dizzy.
I might start and I’ll get some removed wax. Go from there 👂 …
Last week, guess what? I fell off my bed first since my initial issues in 2018. About time about time…!
My speech is going okay – not great but in my opinion. Other people think other wise 🙂 (me) …!
Which means: (5/5)
And how is chemotherapy?
Is it working? Or not? If it’s worth it and everything that goes with it?
I think because I am having the part of me wants to see how that goes without the chemotherapy. I think because I am having the part of me wants to see how that goes without the chemotherapy/without some of the drugs 🥴 .
It’s a bit late now – I am just being a bit blasé and definitely will having chemo this week. Done…!
Just to remember to have lots of water. Which reminds me, it’s time for some water…! 💦
Ps. can’t believe it’s November, look at the weather ☀️
Last week, my family did thought my speech and generally chat was pretty rubbish (my words).
My speech therapist agreed (J~). She thought I should have some blood tests. My speech and my right hand were massively different and she was concerned.
At Guy’s, I saw a registrar (is a doctor who is receiving advanced training in a specialist field of medicine in order to become a consultant).
My steroids were upped next day – 10mg (from 8mg). I will back on 8mg quite soon I think.
The registrar thought I was okay. So the same plan for was Sunday was no changes (including my the MRI).
Saturday morning (08.00) I felt a better. Obviously my speech was off muddled. It was still but early and I had only one 1x day on steroids. My hand feels better. I don’t want to ‘oh my God, amazing’ that is definitely better.
On Saturday evening, I looked to see how much and how much I was tired I was:
12.00 – okay but not as good as before 🤔
16.00/17.30 – asleep in bed 😴 ￼FYI
18.30 – not good 😮💨
22.30 – again not great right. My right foot and hand we’re tired and ache 👎
I know it is bad then good in at bad then good, etc. Fatigue makes a huge difference. I try to have a sleep for in the afternoon, it works but sometimes you can’t have one or you don’t want to.
Again my occupational therapy (O~), physio (I~) and speech therapist (J~) can’t this so relevant. I get it now.
Okay, it’s Sunday now. Let’s see how my tiredness is today…
…but before that, I am so happy that Jo was asked if she to come into the MRI scanner this morning during the scan…! I know this is not everybody’s cup of tea but definitely Jo’s. She saw things I’ve never seen before. Thank you 🙏 . Amazing.
Anyway, back to being tired/fatigued which I was in the morning. My eyes were stinging, both left and right 😵💫 .
All day I was the same and my arms were so cold. In the big scenario, this seems quite trivial 🥶 but that’s what I’ve been logging.
10th November 2022 – this is MRI result day. I am looking to to these. It seems like ages.
I would definitely know what it is personally, it’s only putting the inevitable 🤷♂️ .
Hopefully it will be okay but…I don’t know. Let’s see and let’s hope the Avastin does it’s thing as before. Keep your eyes peeled 👀 !
Avastin – bloods 31st October 2022 🩸
Avastin – my house (FYI my Avastin he’s now done and my house – not the my hospital). Bizarrely it is better to have it out your house – not much still 02 November 2022 🏡
Haemostasis & Thrombosis – 08 November 2022 🌡
Chemotherapy – (cycle #4) 10 November 2022 💉
Hopefully I’ll next see you in the hospital in then. See you then! 👍
Ps. my nanny Jean passed away this week. She was the last grandparent unfortunately. Grandad George, nanny Flo, (my dad and mum on there wedding day), nanny Jean and my grandad John. Until next time xxxx
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.
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! 🐕
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.
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.
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…
🩸 🩸 🩸
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.
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’…! 💊
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…! 🤔
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.
Busy week as I said – who said it was easy.
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.
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… 💉
“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…”
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…! 🤭
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 👍
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 ☺️
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… 👍
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.
• 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…
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?
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 🤤 🥐 🥖 …!
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.
Neck pain or stiffness
Nausea or vomiting
Vision loss or changes
Inability to walk
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)
Motor function (walking, coordination)
Perception (you see or read)
Problem-solving and decision-making
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.
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