My mums diary – part one

Hi everyone, how are you? I hope that you are well. The next few blog posts are going to be notes from my mum. Theses are her personal thoughts but she has allowed me to use her notes for my blog. So thanks mum! This blog post is notes from when I was diagnosed and start of my radiotherapy.

Germinoma
Inside the brain
Radiotherapy on the whole head
Bigger dose for the larger tumor
Has not spread across the spine
Third ventricle

30 – two – three weeks
50 – to the larger tumour

Too dangerous for operation

Mask made on wednesday
C.T Scan
5 days a week
Redness – tiredness
Arden Centre. Change the tablet to stronger dosage. Don’t start until start treatment

They will check him every 3 months and have a blood test to see how he’s doing.

Our next visit to the hospital was the 2nd of December, when the mask was made and had another scan (MRI). We were originally told that the treatment would start on the 29th December. A couple of days later we received a phone call from the hospital that the treatment was going to start on the 8th December and we would be given all of the other dates for the rest of the treatment.

On the 8th, mum and Arvin went to the hospital when we met by Jhoti who explained everything as Dr. Brown had. Jhoti gave us the whole list of the treatments, the days and times. By this time the higher dosage was introduced to Arvin by Dr Brown.

On the 8th of December was Arvin’s first radiotherapy treatment. They were people in the Radiotherapy department. Two people told Arvin to lie on the big table, adjusted Arvin’s head in the right position and they put the mask on him to keep him in the right position all the time and so Arvin’s head does not move. One of the people put masking tape on the right positions on the mask.

Arvin was lying down on the bed and I was told that everybody had to go out of the room. I say in the waiting room, while they gave him radiation to Arvin’s head for about 10 – 12 seconds then two people would go into the room where Arvin was lying, come out, more radiation for another 10 – 12 seconds.

When we came home, Arvin was complaining about how his head hurts. So I rang up the hospital to see if its ok to give him some paracetamol. So I gave him one tablet.

A few days into radiotherapy, Arvin was saying that he got constipation problem.I bought senokot from the chemist and he is OK but not all of the time. He’s been taking senokot every night.

On December 23rd, we went to see Arvin’s GP, Dr Kasotiry. The doctor checked his blood pressure (normal) and asked how his treatment is going on. Showed him the sheet with all of the details of treatment. Told the doctor about his constipation and his upset stomach. The doctor gave his some .laxatives but we decided to stick with the senokot. The doctor also told Arvin to have a blood test.

On 24th December, we had a blood test done. On the 25th of December, late evening, Arvin had noticed that he was losing his hair by the handful.

hat’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.

The next blog post will be more about my radiotherapy and the start of my fluid blockage.

Please feel free to leave a comment or leave an idea for a future blog post, and don’t forget, if you buy something through Amazon through the blog, or click on an advert, 100% of the money goes to Brain Tumor Support.

Thanks and I will see you soon.

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