NF2 update.

Just wanted to update on my NF2 Clinic appointment i had yesterday. They said the tumour at the base of my spinal cord has grown and because it’s showing signs of causing problems with my right leg and foot they have decided it’s time to operate. The surgery could be in a few weeks time. I’ll be in hospital for two to three days. Also the other radiotherapy treatment is being looked into for the other tumour in my head. That is tumour seems to be causing issues with my voice because it could be pressing on the nerve that controls my vocal cords and radiotherapy is a better option for me than surgery. The tumour on my spinal cord at the base of my neck has only grown 1mm in 5 years so that is ok to be classed as watch and wait. All in all we feel that it was all good news.

It’s been a while.

It has been a while since I posted anything on my blog. I had the stent removed from between my bladder and kidney so hopefully now I won’t have any more urinary tract infections. I haven’t done much stitching over the past few weeks due to just not wanting to. Lack of sleep and constant infections got the better of me. Today though I am actually going to stitch. I’ve put away HAED (Heaven and Earth Designs), Train of Dreams away and now I’m working on HAED, Quick stitch, Huggable. 2 over 2 on 25ct Evenweave.

My urologist’s negligence.

Yesterday we went to see the urologist up in Addenbrooks hospital about all of the urine infections I’ve had over the past couple of years. Turns out the surgeon/urologist I saw yesterday, who did the operation in 2014 on the tumour on my bladder put a stent in between my bladder and right kidney. He was supposed to do a follow up and remove the stent 3 months after the surgery. The stent has been in me for over 3 years and it’s got the calcium that makes kidney stones, growing on it. I’m having keyhole surgery in early June to remove the stent and check the drainage of my left kidney because of a possible blockage. So due to that surgeon’s f**k up I have been suffering with bad urine infections for the past 3 years. Severe vomiting that came with those urine infections. Rapid weight loss when I don’t have the weight to lose in the first place.  Total negligence and incompetence on his part. My consultant/neurosurgeon at Addenbrookes is not going to be happy when he hears about this and yes he will be hearing about it. The urologist is going to get a wake up call when we claim for hospital negligence.


That week has flown.

It was this time last week that myself and Pete were up in Sheffield for my gamma knife Radiotherapy treatment. I had the MRI on the Monday and by this time we were in our room in the hospital accommodation. I opted for no anaesthetic because it causes problems with my ABI connection for days and I already had an MRI the Wednesday before with anaesthetic and I was still having connection problems. Problem was from the Wednesday MRI my head was still a little tender so within a couple of minutes in Monday’s MRI I was in absolute agony. I buzzed the staff in the get me out. The pain was so bad I was close to passing out. I then asked for anaesthetic which was given to me. I lasted the 15 minutes which was needed for the scan but I was still getting some pain. We had to be back at Sheffield hospital for 7am on Tuesday. Had a CT scan so the Radiologist could use both scan pictures to get the exact position of the remaining part of the brain tumour. I went down for the Gamma knife just before 2pm. It took about and hour. They made sure I was comfortable and let me know I could ask them to stop at any time. I kept myself busy by singing some of my favourite Cyndi Lauper songs in my head and it turns out the Radiologist’s could see me on the computer monitor tapping my fingers to whatever song was in my head. Once gamma knife was finished they asked if I wanted a photo of myself with the metal frame on my head. I laughed and told them my husband beat them to it earlier. Lol. I was given a days worth of steroids and stomach protectors because they said that the radiation from the Gamma knife can cause slight swelling of the brain. To hours after the treatment we were allowed to go home. It was a nice 4 hour-ish drive home. We stopped in services just before the M25 to get some dinner and miss the rush hour traffic that’s usually on the M25. Once we got home we got pounced on by the furry kids and they wouldn’t leave our sides for hours.

We both feel like a weight has been lifted from our shoulders now the gamma knife treatment is over. I will be reviewed in 6 months and thankfully that will be at Addenbrokes hospital in Cambridge.xXx

Almost time for my Gamma knife Radiotherapy.

I know it’s been a while since I wrote a blog but the past couple of months have been rough. In March and April I ended up with 3 different urine Infections so as you can imagine I was in a rough state which resulted in me being in hospital twice. So far this month I’ve been ok other than a spot of food poisoning from our local Chinese takeaway. Tomorrow morning we’re off to Sheffield hospital for my gamma knife Radiotherapy treatment on Tuesday. Once we get to Sheffield hospital tomorrow I have an MRI to see the position of the remaining part of the brain tumour I had surgery on last summer. Then Tuesday morning I have a CT scan then the gamma knife treatment. The procedure last a couple of hours. If I’m well enough after the treatment we will be heading home to the furry kids and our own bed. My father-in-law is house and dog sitting for us. No doubt the girls will love having him here for a couple of days. No doubt Fudge will spend 90% of the time on our bed, ignoring the girls and my father-in-law. I’m sure it’ll all be over quickly so then we can get back to some normality. xXx

Time to stitch the day away.

Here’s today’s starting point on HAED Train of Dreams. I am hoping I will get page number 5 finished this week. I’ve been trying to stitch for a few hours each day. I would love to get Train of Dreams finished this year.