Please come and join us to remember and celebrate the life of our lovely James.
Location Christ Church, Broadway, Bexleyheath, Kent DA6 7BT
Tuesday 28th February at 11am
Parking Please use nearby car parks: Asda (DA6 7BN) – free for 3 hours Pay & Display (DA6 7ES) – close but small Pay & Display (DA6 7LB) – further but big
Train The closest train station is Bexleyheath, approximately 15 minute walk.
Dress Code There is no formal dress code. James always wore his “lucky red socks” at significant moments, so please feel free to join him in this if you wish!
Flowers / Donations. No flowers necessary. 💐 We will be making donations to the brain tumour charities from the Avastin fund that so many of you generously contributed to. We would like any further donations to be given to St Christopher’s Hospice who cared for James so well (link below);
This is James’s super-sub, big sister Jo, stepping in to help him write this blog.
I’m not as good with words and emojis (or random facts) as James, but I’ll do my best to keep it in his style…
On Wednesday (1st Feb) at around 3pm, James departed this world for a new adventure, one without seizures 😖 and awake craniotomies 🧠 , chemo 💉 or endless medication 💊.
He was surrounded by love, with his family and was calm and peaceful to the end, in true James style. No fuss or drama..🙂
We are all heartbroken by his loss, not just me, mum and dad, but everyone whose life he touched. James, you are one of a kind…the outpouring of love and sadness that we have felt from everyone is truly overwhelming.
We love you forever, our brave boy. ❤️
James had started writing a blog before Christmas with some of his little videos. I’ll finish that blog and complete his story on here in the coming weeks…he would have liked that. 👍❤️
This is the starting of the new blog today. I have another days before the I’m seeing Dr S~.
Although… I had seizure. It R my hand not great (as per). It was a partial seizure.
Although… it’s not for me to know 🤷♂️ . I’ll see what the doctors and Dr S~ this week.
06/12
☹️ 🤔 🤔 ☹️
Okay, back to business… ✌️
Platelets/thrombocytes are small, colourless cell in our blood that form clots and stop or prevent bleeding 🩸 .
A low platelet count might be a sign of certain cancers or infections 🩸 .
A high platelet count can put you at risk for harmful blood clots or stroke 🩸 .
My DVT works on the same day. A bit like this:
Dec 6th – platelet cancers/infections
Dec 8th – Dr S~ (chemo*/platelets)
Dec 12th – physio
Dec 12th – occupational therapy
Dec 12th – speech therapist
Dec 13th – Avastin (on telephone)
Dec 15th – Avastin (at home)
Dec 19th – chemo*
Dec 19/20/21th – chemo*
Dec 21th – ear/nose/throat (balance)
10/12
However…
The DVT/chemo* people think are thinking a different resume. This might be too much this chemo* 💉 currently. So they want some pills 💊💊💊 and no anymore 💉 .
It’s my decision but my oncologist thinks it’s it’s better. I’m not sure yet. The new regime was longer (21x days) but the drug wasn’t as powerful. As I say, I’ll have a think… 🤔
11/12
My thinking is two trying to have the normal chemo* AKA like before. Not sure yet 🤔 .
Which one we will see TBC on there this week. Hopefully just something to do and there is a result…
I am still at Kings but I think I’m going home today. Not yet though. The surgeon called me this morning but I was at the hospital.
I have here for a week. I feel okay but I am very weak on my feet – very weak.
27/11 – Kings
Unfortunately already had 4x falls last week which is not great. This is something they have hospital very seriously.
I have not ever had glasses. Let’s see if they work. I am a bit sure they will 🤷♂️ . Not sure. Lots of trial and error I think. I think I will get some of the wrap ones possibly next.
30/11 – Kings
I am the same drugs before. Except the time is different. Before 4x (4mg), and now another 4x at later 8mg in total (as per told).
Unfortunately, there was a in total (too much) 16mg per day before. That’s quite a jump apparently for steroids. But that’s gone now, all good 😬 🤔 .
30/12 – Kings
Dangerous levels of simple blood test that measures your average blood sugar. Increases the risk of long-term diabetes complications like blindness, nerve damage, and kidney failure.
See what is said to me. I’ve waiting for for some 🩸 bloods. I don’t if there is a problem, or how’s long it it’s going to be here.
01/12 – Kings
The physio has been and I think they’re fine for me to going home. And the occupational therapist.
The surgeons are happy the are finished. We are waiting for the discharge people 👍 . As I say, I am okay not great.
01/12 – Kings
Okay, I’m home…! 🏡
Got back about PM, my speech and is not great. I am not right now – but we’ll see. I’m sure whether to ignore it right now (specially when the football is on) 🤗 ⚽️ ..!
02/12 – Kings
Jx
Ps. the CNS from Kings/Guy’s have been which was amazing. Thank you – as always 😍 x
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.
Ava…! It’s a lovely day today ☀️☀️☀️
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…
24/11 – Guy’s
28/11 – Guy’s
.
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.
I’m trying to say something to remember seeing my what I’m trying to say. It’s currently 17.00 own Friday.
I can not get my speech right but I think this new . This is so annoying – this new WordPress.
WordPress . I am find it very. Sorry everybody. I didn’t get it. I didn’t get it.
.
I feel I remember what something is saying . It’s like before. I am trying to people I shared before.
I will we all learn it 🤔 …
.
I haven’t said anything about my chemo. I will happily do that, but I have no right to say that.
I want to do scans, but I know what to say. My head is a jelly.
Please scan which are very serious. And I can’t say anything.
How are you I’m trying to what to do.
.
How are you now? I think you’re better? But why speech is still great. Then I see the filler and it actually is quite good.
Oh see how it says tomorrow and the weekend. I think I am getting better. Yesterday was pretty bad which we know.
I want to know this before the scans.
.
I’m sure this is what ?! but I’m sure he’s good before. It’s definitely not ?! I am trying to do this no . This is going not great is it? 🤣 🧐
I was trying to make a blog , but very difficult . The problem is he’s the one I’m trying to run he’s really a big one because it’s about my oncologist and what I’m trying to do at the moment.
If I’m fortunately, I think what she says, and I am having a different things . So I’m hoping to see that who soon.
I think I already said before, I am what’s going on and she was quiet ‘I really…?!’ .
😬 🤔
Jx
Ps. what a random this blog. I hope this shows random and how it’s really difficult to sometimes.
This is something is called ‘chemo brain’. During cancer treatment which in your memory, concentration or your ability to think clearly…yeah, yes I get that for sure… 😤
Typical, the blog I’ve already is not working. Noooooooooooo! It’s probably me doing something wrong which is a good example of what’s going on.
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 😋 .
🌡 20/12/2018 🥧
Which means: (1/5 – today/or close)
COVID-19 ✅
Ultrasound❌
Bloods❌
Vertigo❌
Chemotherapy❌
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.
Covid-19
Which means: (2/5)
COVID-19 ✅
Ultrasound ✅
Bloods❌
Vertigo❌
Chemotherapy❌
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).
I love this model 😆 …!
Which means: (3/5)
COVID-19 ✅
Ultrasound ✅
Bloods ✅
Vertigo❌
Chemotherapy❌
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 😊 .
Guy’s Cancer Centre – 11/2022
Which means: (4/5)
COVID-19 ✅
Ultrasound ✅
Bloods ✅
Vertigo ✅
Chemotherapy ❌
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) …!
11/2022
Which means: (5/5)
COVID-19 ✅
Ultrasound ✅
Bloods ✅
Vertigo ✅
Chemotherapy ✅
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…! 💦
Jx
Ps. can’t believe it’s November, look at the weather ☀️
Lots of brain 🧠 fog – all day. 24/7. It’s my only symptom pretty much and tiredness. I have had a shower and even doing that I was dizzy.
I left eye is constantly flicking it like when it has it feels like it is something in it. My body it’s cold and not quite right but I will get there.
Right now I feel very lethargic. My right leg really struggling. Definitely harder to use upstairs and down the stairs.
I wrote a blog when my got my hand rail and initially I thought I would rarely use it. I couldn’t without it now.
Sep 2022 – the rail…
Again, thank you to Guy’s and the occupational/physio teams (O~/I~) for their help here 🙌 🙌 .
I sometimes think I don’t work hard enough at home on the tasks given to me by O~/I~.
Simple things are a challenge that I must work hard to overcome. I must try to remember that and be kind to myself.
I do practice things even if in everyday life. I walk and communicate is therapy. My right hand, right leg and foot.
I think my speech is my that which is the most desirable thing is a moment so that’s good. The difference 6x months does… 😱 .
8th April 202230th Oct 2022
So yes, it’s a good chat today (30th Oct) and my speech has been good so far. I know I can to criticise myself sometimes.
My speech will never 100% and sometimes it will terrible – I need to chill out and listen to my speech therapist J~…! ✌️
31st October 2022
08.30 same same same (so far). It could because of the steroids or we wait for the Avastin to do it’s magic 😬 ! Pretty please.
12.00 Dr S~ called me to discuss my blood results. White, platelets, red cells. Good apart from the red bloods – my haemoglobin levels were quite low.
If this continues, I will probably need a blood transfusion – but for now it will be monitored.
31st Oct 2022
Which is pretty much every struggling with. Let’s do it…! 👊
31st Oct 2022
15.00…
31st Oct 2022
…that’s annoying. Good job I got the receipt 🙄 😄 🧐 (- that’s a good reading on the blood pressure FYI monitor).
I think I will wait for the actual results from at Guy’s next week. I am very happy for them to tell me this week/next week 🧑⚕️ .
1st November 2022
Another blood test this afternoon as part of my Avastin checks with the nurse. My blood pressure is still dropping – but it’s massively within spec.
1st Nov 2022
3rd November 2022
Blood pressure is measured using two numbers: the first number (systolic blood pressure) measures the pressure in your arteries when your heart beats.
The second number (diastolic blood pressure) measures the pressure in your arteries when your heart rests between beats.
3rd Nov 2022
I got an another email earlier about an ultrasound scan on Sunday 😱 …! This scan is my abdomen (showing your vital organs).
Things like your stomach, small/large intestine, the liver, spleen, gallbladder, pancreas, the kidneys, the bladder, etc.
So…I am back to Guy’s over the weekend to see what’s going on. Hopefully nothing.
When it rains, it pours 😉 🌧 🙄 …!
Jx
Ps. actually I have something for tomorrow. My Covid jab 💉. This is my 4x coronavirus. I’ve have been okay before, but that’s a lot in round body right now 😮💨 …!
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.
21st October 2022 – Guy’s Hospital
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).
21st October 2022 – Guy’s Hospital
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.
22nd October 2022 – Guy’s Hospital
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…
23rd October 2022 – King’s College Hospital.
…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.
23rd October 2022 – King’s College Hospital
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! 👍
Jx
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.
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 🤩 .
~ astrocytomajames ~ 