15 down, 15 left to go.

We’re now half way through my Radiotherapy treatment. Yesterday I started the 4mg of steroids and so far they are doing good. I have more energy and my appetite is back. Today was my first treatment of the week and so far I’m not experiencing the usual¬† exhaustion I was getting after a treatment. So we’re feeling really hopeful that this half of my treatment is going to be a lot easier .


What a rough week.

I had radiotherapy treatment on Monday but the evening I was feeling rough and started vomiting. Had to cancel Tuesday and Wednesday sessions. Went to Addenbrookes Thursday for a session and a review and after talking with Dr Jena they cancelled the sessions for Thursday and Friday. They put me on a higher dose of steroids. Dr Jena was convinced he first prescribed me 4mg of steroids daily and even tried to argue with Pete when Pete told him Dr Jena only prescribed me 1mg daily. I was even to the point in refusing the rest of the treatment if it meant I was going to be vomiting every single week. I had been pushed to my limit and so close to just giving up and just leaving the intracranial tumours alone, full stop. That was hard to type, what I was feeling Thursday because I had really felt so low and I couldn’t see a way out but after plenty of sleep and hours of talking with Pete I am back to seeing a light at the end of the tunnel. So starting Sunday I am on 4mg of steroids. Monday we will the the start of my last 16 sessions of Radiotherapy. It would seem I am sensitive to the radiation but no one wanted to agree when we mentioned it before when I’ve been vomiting after a few sessions. Hopefully the last 16 will go to plan this time. We can’t wait to get back to normal.

This is harder than we thought it would be.

My Radiotherapy treatment is harder than what we thought it would be, for both of us. Having to do 1.5 hour drives to Addenbrookes and home is hard for Pete. Then me going through Radiotherapy sessions which only takes a few minutes but makes you feel mentally exhausted in a space of those few minutes. I am on steroids to prevent my pituitary gland from swelling from the radiation but that doesn’t help with the exhaustion nor the flipping insomnia radiotherapy causes. I’m forever tired but getting no respite from naps during the day or in between sleep and awake I have through the night. I have sleeping pills which help me to shut down at night but I am not having a proper restful sleep. Radiotherapy near the Pituitary gland also can kill your appetite so with tiredness and insomnia I am struggling to maintain a decent appetite to get me through the day. I still have 17 treatments left to go. 

12 down, 18 to go.

12 radiotherapy treatments done. All is good so far this week so hopefully I can do the full 5 days of treatment. I seem to have my appetite back so we’re happy. Looking forward to the weekend off from treatment. Plenty of time to stitch.

First bit of stitching in over 2 weeks.

Due to my Radiotherapy treatment I haven’t had the time or energy to stitch. I was also admitted into hospital due to vomiting blood yet again. It was feared that the Radiotherapy was the cause but now that has been ruled out. 5 treatments down, 25 left to go. Today I am actually stitching. Not sure how much i will get stitched but every stitch done is less to do the next day.

3 sessions done, 27 left to go.

I had my 3rd Radiotherapy session today. I need to keep a watch out for unexplained headaches or sickness because the area they are treating is quite sensitive so I could end up with a bit of swelling which can be easily sorted by medication. The tumours are very close to the Pituitary gland. I have got tomorrow left of this week then we have Saturday and Sunday off from my treatment, so we can have a nice long sleep in and spend the whole day doing hobby.

No Radiotherapy treatment for me today.

Had to cancel due to vomiting which started yesterday and I’m very dehydrated so treatment today has been cancelled and am extra day will be added to the end of my treatments. My blood pressure is low and my pulse rate is high so I need to drink plenty of fluids. Hopefully tomorrow I’ll be well enough for tomorrow’s treatment.

It’s almost time.¬†

This time tomorrow I should have finished my first session of my 30 treatments of Radiotherapy. Am I nervous? To be honest, no I’m not nervous. If it was the day before brain surgery, I would be very nervous. I am pleased that my NF2 consultant decided on the Radiotherapy treatment rather than a risky surgery that these two brain tumours would have caused. This year we’re planning on doing the things we never had the chance to do last year. I’m also planning to get a few cross stitch projects finished. HAED or non-HAED. Either way I’ll be happy with any finishes.

The first part is over.

Today I had my Radiotherapy mask fitting done at Addenbrookes hospital. The drive there this morning was a nightmare because once we got onto the M25 it started to snow. Thankfully the M25 and M11 had been gritted. Other driver were rubber necking because of a 3 car accident so they weren’t paying attention to the road or cars in front of them. We saw some complete idiot drivers that shouldn’t be on the road full stop. Once we got to Addenbrookes we waited to be seen. I had the mask fitted as well as a CT scan while the mask was cooling and harden. I have been given dates and times for all 30 radiotherapy treatments. The first one is on the 15th January. The drive home wasn’t too bad. The snow wasn’t as heavy as the journey too Addenbrookes. I

Roll on 2018!

What a crap year. For the first 6 months I was in and out of hospital because of vomiting blood, some caused by urinary tract infections. Thankfully that has come to a full stop. I had multiple urinary tract infections due to a stent being left in for 3 years so I had to have a procedure to remove the stent. I had Gamma knife treatment on the remaining brain tumour from my surgery last year. I had surgery on my spinal cord to remove a tumour that started to grow more and cause problems. Then due to my ABI magnet displacement, I had to undergo minor surgery to have the magnet put back in its proper place. Now both myself and my husband have dealt with colds and coughs for the past week. I’m close to the end of my cold but my husband’s cold seems to be hanging around. I’m worried that he may also have sinus infection and chest infection. In the “quiet” gaps between personal crap we’re helping family members with their health problems they’ve had this year. I’ve got 2 hospital appointments this week. One is an ECG to check out the LQTS, Long QT Syndrome that was picked up during my spinal surgery. Also I’ve got to go to Addenbrookes hospital for my fitting for the Radiotherapy mask. My Radiotherapy treatment starts on the 15th January so we’ve got to get ourselves sorted and prepared for the traveling to Cambridge hospital 5 days a week for 6 weeks. 62 miles each way, 1 hour journey. When will we get a break? When will we be able to have some time for us to relax and enjoy a day out, just myself and my husband, where it doesn’t involve being ill or hospitals.