Fancied a stitching change.

HAED Mini, The Astronomer has been pulled out from my HAED WIP draw. This is today’s starting point.


Taken it’s toll.

It seems that the 3 MRI’s I’ve had this year has taken its toll on my ABI. The magnet casing that sits in the bone of my skull has a magnet which connects to the outer processor that I wear to pick up sound. Well the magnet has come loose from the casing which means I haven’t been able to get a connection since Friday 11th November. This means no 30% artificial hearing which I have lived with for the past 12 years since the Auditory Brainstem Implant was fitted. I have been totally deaf because of NF2 for almost 12 years so I have completely relied on the ABI. I miss it so much. I will be having a small procedure on the 27th to replace the magnet into the casing. Also because of this my Radiotherapy will now start after the New year. I’m not disappointed because that gives us a chance to get a bit of money together to make sure we’re covered for the 6 weeks treatment. We’ve still cancelled Christmas this hear so it looks like we’re going to go to our favourite Chinese restaurant which is open Christmas day. 

Today I had my head MRI. I also had my right arm scanned separately because I have a tumour growing in my bicep. That will get looked into. Next Friday I will be seeing the Neuro-oncologist, Dr Jena, about the Radiotherapy treatment. It could be starting the Monday after I have seen him. My NF2 nurse said that it will most likely be happening before Christmas. I’m so pleased that will be starting soon. I was told that the treatment can cause me to be exhausted so this year Christmas is being cancelled because we’ll already have enough to deal with when the treatments take place. I’m hoping that next year we can finally do the things we had hoped to do this year.

Absolutely knackered.

Had an early appointment today at the eye clinic at Addenbrookes. On the road by just after 7:30am. Got stuck in loads of traffic most of the way, making us late by 20 minutes. It is known that people with NF2 can have tumours grow on their optic nerves and can develop cataracts. Thankfully my optic nerves are free of tumours. My eyes do have the first signs of cataracts but it’s so minimal that it will be years and years before they become a problem. So although it was s bugger of an early, traffic filled morning, if was positive on the NF2 front. 

Anytime soon.

On the 10th November I have my head MRI for the preparation of the 30 sessions of Radiotherapy treatment on my brain tumour. Hopefully it’ll be a couple of weeks or maybe less when my Radiotherapy treatment starts. Am I nervous? Not one bit. I’ll be glad once we get a start date so I can get it off my mind and get on with it. For the past year I’ve been on anti-depressants and they have helped in many ways. I decided a couple of weeks ago to stop them because it’s a possibility they have been contributing towards the Long QT Syndrome ( ) which was picked up on the ECG I had just before my surgery on my spinal cord tumour. I’m waiting to hear about the referral to my local hospital to get it checked out. This could mean I have to connected up to an ECG machine and use a treadmill for tests. Lol. That will be fun to watch. I can just about walk around the home without crashing into things, I’ve not got a hope in hell on a treadmill. PMSL. Best make sure my husband has his phone camera going. May receive £250 if we send it to “You’ve been framed.” PMSL !!!!!

1 week ago.

This time last week I was waiting to hear if I would be discharged from hospital. It feels like I’ve been home longer than a week. My back is healing well. The back muscles are slowly getting back to normal. I’m still having to take it slow but as they say, “You can’t run before you can walk.” I’m actually going to try to do some stitching today. 

Lack of communication.

Addenbrookes hospital is fantastic but like all hospitals there is no communication between departments. Today I was due a head MRI but decided to cancel due to bad pain from my spinal cord tumour surgery I had last week. On the phone my husband was told that you’re not allowed an MRI until 6 weeks after surgery. Flipping good job we hadn’t done the 1 hour drive to Addenbrookes, only to be turned away. Oh well, looks like we’ll just have to go back to bed and sleep the day away. Lol

14th surgery is done.

My 14th surgery is over. Mr Mannion, my surgeon said the operation was a complete success. He managed to remove 100% of the tumour on my spinal cord. No problems with movement in my legs and feet which was one of the risks of this surgery. I was back on the ward about 13:30pm Thursday afternoon. Because I had a drain fitted I had to lay flat for 48 hours. That was not an easy task because it meant I had to eat and drink on my back. After a few spills and missing my mouth with food, I got the hang of it. The first two nights were rough because of pain which even morphine failed to touch. Saturday I was sitting up but sadly vomiting up the anaesthetic which was delayed due to laying flat. Once that stopped I was able to relax a little more. By Sunday morning I was eating and moving around my bed. Once the catheter was removed I was able to get up and walk around with the aid of my walking stick. I didn’t even get back into bed. 3 days was enough. Lol. When the doctors saw me moving around they agreed to discharge me. We arrived home around 5pm Sunday. Sadly recovery is going to be a long one. We were told it could be about 6 months. Hardly surprising when my lower back muscles were pulled apart to reveal my spine so they could carve away bone to get to my spinal cord. I had this surgery before but further up my spine and that knocked me off my feet for 6 months. Only difference I can tell between the two surgeries is the lower back muscles are actually used a heck of a lot more than the central back muscles and don’t I know it. OUCH! Now that this surgery is over I can now wait on hearing about my 30 treatments of Radiotherapy on my brain tumour. I have an head MRI on Friday which could mean the radiotherapy treatment could start soon. Fingers crossed it’ll be before next year just so it’s done and dusted.xXx

All packed and ready.

I’ve got my bag all packed ready for my spinal cord tumour surgery tomorrow. Got to leave home around 5:30 to get up to Addenbrookes hospital by 7am. We were told I am first of the list for theatre so hopefully I’ll be back on the ward by early afternoon. Mr Mannion, my surgeon said I should only be in hospital 2 to 3 days. So if all goes well and I’m up an about I may get discharged Friday evening. I am known for bouncing back quickly after surgery so I doubt this will be any different. Even last year when I had the head surgery I was out within 3 days. This operation is number 14 in 13 years. I swear I’m going to look like Sally from Nightmare before Christmas. lol.



Pre-assessment all done.

Today I had my pre-assessment for my spinal tumour surgery on the 11th October. I’m looking forward to having this tumour removed because then the 30 treatments of Radiotherapy treatment can start. That will start once I have recovered from the surgery. 😆