Hi there and welcome back to my blog. How are you? I hope that you are well. Today I’m going to be talking about part 3 of my mum’s diary. This is where the fluid blockage happens.
On the 22nd of January around 3:30pm, we had a phone call from the hospital and Ian Edwards was on the phone and I spoke to him and he said that we were in the clear and we will call him for his 6 week checkup and if we don’t then you should make an appointment with Professor Brown secretary. I asked about Arvin’s tablets. He said keep it normal for a couple of weeks then cut 2mg tablet in half when that’s finished, then its finished. No more after that. He is still drinking the same, it’s a lot of water and still has dizzy spells.
25th January – his said that eyesight was getting better but on 26th he said that eyesight was cloudy. Arvin’s 6-week checkup is on March the 9th.
29th February – Arvin finished his steroids (tablets). 29th was his last day He was ok on the 1st of March normal dizzy spells and normal tiredness but on the 2nd of March he was very, very tired and lots more dizzy spells and not so hungry, but made him eat whatever he wanted to eat even if it meant eating chocolates. From the 2nd of March to the 10th March his health went downwards. On the 10th of March he couldn’t even stand up but he did try very hard but just couldn’t stand. So I called the oncology department in University Hospital and I told the lady what was happening and she said get him to the A&E as soon as possible, bring him in your car or call 999 and ask for an ambulance, but that could take upto 2 hours.
We got to A&E around 7pm and within half an hour, we were seen by the doctor. Checked his blood pressure and explained everything to him about Arvin’s history with brain tumours. He said as soon as a cubicle is empty we’ll take him in. Went to the cubicle seen by the nurses and found he had a high temperature, gave Arvin some liquid paracetamol to get his temperature down.
Then the young lady Dr came and checked his eyes and his flexibility and gave 4x2mg tablets (dex) and told us that this properly happened because we stopped the steroids too quickly. The same night we came to ward 12 where again he was seen by the doctor. Put him on a higher dose of steroids and needs an MRI scan. On the 11th of March a different doctor examined again and the only difference they said was to get an ultrasound on his stomach. When the doctor said “have you got any questions?” Arvin said, “how do you turn this into a table?” That supposed to be the bed. That’s not like Arvin. I know, I know something wasn’t right, by the evening, he didn’t even recognize me, that’s his mother. I had to tell him that I was his nurse. That was the most heartbreaking moment for me. On the same day we came to the oncology department, ward 35 room 33.
On the 12th of March, he still didn’t recognize me or anybody. He eats like he would eat normally,, he was still having a higher dose of steroids, still very tired and sleeping most of the day and night. For the first time, he wet the bed, which wasn’t his fault because the pad wasn’t put on properly.
On the 13th, he had an ultrasound done on his stomach. One doctor said have the stomach scan but the other doctor said there was no need, we had the scan done. He did wet the bed a few times and still very very tired sleepy.
On the 14th Ian Edwards came to check on Arvin and he was a bit surprised to see him there. and asked how he ended up in the hospital because as far as the tumours went everything was alright. Another lady came in and said that we are going to get an MRI done.
15th – the MRI was done and Ian Edwards came in and said the MRI was fine, there’s no problem with the tumour, it’s all gone but there is a fluid blockage in the brain but we aren’t going to operate it should be sorted with the steroids but we will keep an eye on him. He also said that somebody from the special department will come and explain to you about this. Ian Edwards also asked if Arvin ever fell down and banged his head which Arvin did when he fell down the stairs.
That’s it for now. Once again, I just want to thank a few people. Firstly, I would like to thank my mum, dad, sister and my Naughty Mamaji, for being by my side, throughout everything. I would like to thank Louise from BTS for sharing this with the community. I would like to thank Kanika, Shirley and everyone at Carers Trust for giving me the confidence to sharing my story and I would like to thank Joe for motivating me to getting back on the horse. And I would like to thank everyone at the hospital, my family and friends and everyone who I’ve met on this journey.
On a personal note, I’ve stopped volunteering at Carers Trust because of my personal financial situation will not allow me to volunteer. So I’m looking for part-time work, if anybody can help, with work in my field, feel free to leave a comment. .
The next blog post we will be continuing more about my fluid blockage.
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Thanks and I will see you soon.
