So I am 6 days into my day trips to Bristol! 24 to go….
All good so far- and no side effects! It has been completely exhausting though as this is my last week st school so tying in leavers chapels x2, sports days x2, leavers drinks, parties, prizegiving, childcare and treatment had been quite a mission! Still, one day to go this week and all good for a couple of days respite!
The treatment itself is so quick and not too uncomfortable although with the current temperature the mask 😷 definitely feels a bit tighter?!! When the machine is on, a you can hear is weird techno noises and psychedelic lights (even though your eyes are shut!).
I will keep you posted with side effects and when but all good so far apart from being knackered and emotional!
Still need a band got my mask 😷- it’s a she!!!! Any suggestions welcome!
So – it’s been a while ( two bank holidays and a fire at the oncology hospital in Bristol not helped!) but finally today I had my mask fitted and final CT and MRI scans done prior to the radiotherapy starting. Weird sensation when they put the hot plastic mesh over your face and press it down ..! All ok though and I forgot to take my phone in but next time I promise I’ll get a picture of it! Long mri scam today, was over an hour?! When the guy did the injection halfway through he said “are you on blood thinners?” I said”no, why , am I a bleeder?”…. I couldn’t see it apparently I was a bit!!
Given the schedule for the 30 “fractions “ and now don’t finish until the 1st August?! But at least I can plan a bit now. There are a few that I may have to change (Ed Sheeran, my last day at school/work when Derek Redmond is doing prize giving?? ) but otherwise I am just glad to be finally starting.
Will post again after day1&2 of the radiotherapy… and defo get a pic of the mask 😷
So as I promised I would update you – here goes!
I met Alison Cameron on Thursday morning at the Bristol Oncology hospital. She was fantastic, talked me through all my old scans and showed me the dodgy bits of Trump on both the CT scan (done immediately after my op) and my most recent MRI scan. She then went on to explain that because there are a couple / or a few little pieces and they are a bit “fuzzy” (that is “not clearly defined”) the Stereotactic Radiosurgery is not going to work. Sooooo, cut a long story short I need to have six weeks (30!!) treatments of radiotherapy, basically Monday to Friday, for six weeks?!!! Gonna get used to travelling to Bristol!! Didn’t expect that but ran through all the potential side effects and all that before signing the consent form. So I am now waiting to hear when I go for the half day of mapping (up to date scans and mask making!) that’s not a new hobby by the way but I will have a facial mask made (warm plastic sheet moulded over my face!) to use at each treatment.
I think I can probably rock the Hannibal Lector look! This mask will then make sure that I keep still while being zapped! Then after mapping day, they do their planning and a couple of weeks later I’ll get started…
I’ll post a pic in my mask 😷 I promise! That’s all for now!
so following my appointment with Mrs Herbert, I have been re – admitted to the Bristol eye hospital and have a couple of appointments on March 1st. I have also had.a letter regarding my situation which as I thought now seems to suggest that Trump is misbehaving enough to need a bit of radiotherapy in the future!! So I have today received another appointment for oncology (slightly scary word!!) but sure will sort him out!! This is on 5th April 🙄
Anyhow will keep you posted, but in meantime am feeling a bit wonky again but otherwise all ok and enjoying life to the full.
Lots of love
Well it’s been a while so huge apologies but I thought I would let anyone who is still interested what was going on! I went for an extra MRI scan in December as my right eye had started going a bit puffy one year after surgery…. today I had an appt with Mrs Herbert (who is the orbital specialist who first spotted my issues and was hero no.1! She explained that (as I suspected) something is obviously happening with Trump!! As they couldn’t remove it all there was always a chance it could grow back…. whilst it is not causing me any major problems at the moment it may do at some point and is obviously causing swelling and probably the (rare but major) headaches I have had in the past year! So…. the Bristol lot have already discussed me at MDT last week and are coming up with a plan. This will probably involve stereotactic radiotherapy or surgery?! Will need to google that properly at some point!!! Anyhow I will keep you updated….
Huge apologies for the delay since my last post….. But it’s amazing how busy life gets when you’re back at work, able to drive, have a son taking GCSEs and swim training!
I have seen both Rebecca Ford and Mr Ps (new) registrar since I last wrote. Miss F had seen my February MRI and told me that there did appear to still be something there… So like his namesake it would appear that Trump is hanging around, at least for now! She did explain that it may not be “active tumour” and even if it was there is still radiotherapy or she could “go in and try and remove it behind my eye” so basically without any more brain surgery which I guess is good news!! She also admitted that she’d had to cauterise some blood vessels during the op so that may explain my lack of tears from my right eye… This is not a major problem and I have learnt to take eye drops with me at all time.
I then went to a follow up at Southmead and saw Mr Ps new American registrar. He showed me my before and after MRI scans, which were fascinating and you could see a little bit of something close to my optic nerve. He said the same as Miss F and basically I will just have to wait and see. It may be the case that as it no longer has a blood supply so will just shrivel up and go or it may (slowly) grow again.But they are not going to scan me for another year which makes me confident that they’re not too concerned. Both told me to watch out for any changes to my eyesight but otherwise I was “good to go”!
On June 4th I completed the “Escape from Alcatraz” swim in time of 54.40. I did in a swim suit and not a wetsuit in the end and came second in my age group for non wetsuits! It was quite an adventure being dropped off by ferry at the prison ( with 900 other bonkers swimmers) and having to swim back to the mainland and I was elated to finish! So far I have raised £1700 for my two charities Young Epilepsy and Brain Tumour Support and I want to say a huge thanks to all who have donated. I will post some pics soon! 😉
Its been a while so I thought I’d just do a quick update post. I’m back driving which is so fab. I basically got a cover letter from the dvla until my actual license comes back. It’s nearly Easter holidays so I’ll soon be back at work properly which will be a bit of a shock to my day time TV viewing, but hey there are only so many episodes of homes under the hammer a girl can take!
Medical wise I am feeling good. Jaw is (very slowly) improving. My facial numbness is still a bit weird but just pins and needles/ tingly which is ok. My right eye still doesn’t cry, which I had hoped would come back (if did after my biopsy op) and so it gets a bit dry and uncomfortable but no worse than that. Next week I have a follow up appointment at Bristol Eye hospital so I hope I will be able to ask Miss Ford about the eye issues and personally thank her for her part in my operation. I believe she came in to “do her bit” from about 5 til 730 pm, and I will always be grateful she managed to help save my eye/ eyesight!!
A few people have messaged me saying that they have had similar experiences or are embarking on similar journeys and they have found my blog helpful. That is so nice to hear and I am only hopeful that my pretty positive story helps others.
Talking of helping others, I am off on June 4th to San Francisco to swim the Sharkfest Escape from Alcatraz. I am hoping to raise some money for both Brain Tumour Support and the Young Epilepsy charities as they have provided both Jamie (my son) and I with valuable info, help and advice. I have been training a bit in the pool, and yesterday managed to swim my first mile ever! I got a little bit worried when I read on the event website that “this is NOT a swim for novice open water swimmers” – I am blatantly a novice open water swimmer 😳😱 but I am determined and as long as I can still squeeze into my wetsuit, I shall venture into the open water training bit soon!!!
See you all soon x
As 2016 comes to a close I thought I would post one more time, as I have neglected it for a while! Christmas has been busy but I am now enjoying a few days rest before the new year.
I’m exactly halfway to being able to drive again 😃 Not that I’m counting down the days.
Really early on in this blog I mentioned my son, Jamie. He has epilepsy and early this year they found a lesion on his right side which they thought might be the cause of the focal seizures he had been having with increasing intensity. It had got to the stage where he was having 12+ a day (and night), he had fallen down several times (once ending up in hospital with a cut chin) and he was having to wear pull up pants as he lost bladder control. It was basically a nightmare for him as he lost any independence he had gained and was nervous to go anywhere out of my sight. School became increasingly difficult and scary for him. So when Mr Mallick and Mr Carter at the Bristol Children’s hospital suggested surgery to remove this legion (with the hope it may reduce or even stop his seizures) we saw it as a no brainer, despite being terrified. This was all decided around the same time that I was diagnosed, so you can imagine the amusement of the prospect of double brain surgery for us. Doctors and nurses did keep saying “you must be the only mother and son…….” Etc!!
Anyway on May 23rd my big brave boy underwent a right sided craniotomy with six hours of surgery. He was really groggy for a couple of days but was home after a week and has slowly improved hugely. He is still on keppra and tegratol (anti convulsants) and has the occasional aura and absence seizures but the rest has stopped. He is managing back at school full time and is confident enough to travel on the train alone up to his dad’s and back. So that’s his story 🤕. It was good when it came to my operation as he was extremely nonchalant about it and he therefore didn’t seem to be worried in any way!!
Back to me and the here and now, my mouth still not opening properly but I have probably neglected the exercises over Christmas so I’ll get back onto them. The tingling sensation is still there too but much better and I guess the nerves are rebuilding. My hair is growing back (very slowly!) but I have managed to disguise the worst by having a fringe cut in! 👧🏼
I am looking forward to returning to work (just one day a week to begin with) at the end of January. I have survived over Christmas without too many day time naps so I think I’m getting stronger.
Final positive 😜 this whole non driving thing is the opposite of being pregnant I have decided…. I can go to all the seasonal parties and drink…. Just someone has to drive me there and back – ideal 😂👍🏼
The end of 2016 – the most surreal year ever but on whole not too bad!! Still, glad it’s all over! X
I actually told Mr Porter that he was a “legend”?!!! Little bit embarrassing but I’m over it and hopefully he didn’t mind.
Just come out from my follow up and best news is that I don’t need radiotherapy 😀. Also can start weaning off the
anticonvulsants as of today so I’ll be completely free of them well before Christmas. Sadly no photos from during the surgery 😷but I will add some later that he let me have from the before and after CT scans. I am allowed to fly, still not driving for 6 months (provided no fits once off the drugs) but two months gone already so that’s only four to go. MRI scan in February and then yearly checks/scans. 1 in 10 chance of it coming back but he said not likely as they got out “as much as they ever have with one like yours”
One of the questions I asked was “how much titanium?” And he just laughed and said “a lot”!! Then he said actually about 10% of my skull 💀 is now titanium. Amazing 😉
Pics above show post op CT scan (side on and the arrow pointing at titanium plate, also the staples can be seen “floating” towards top of my head!) and the two smaller ones are the before (bottom one) and after (top). This is pretty cool as you can see the dotted line titanium on the top one and you can see how much bone is now effectively gone!!! Why I haven’t lost that half a stone I do not know?! 😜
Don’t worry I’m not about to start talking politics….
So I made an impromptu trip to Southmead on Friday, just to have my concave head issues checked out. Apparently it is fairly “normal” after surgery (though I’m beginning to think that there isn’t a “normal ” post brain surgery.) but it is just due to muscle atrophy/ wastage. I think that it is the temporalis muscle that is the main one which is cut during surgery and operates the jaw…. I guess that now the swelling has gone down it just shows up more. I’m fine with that and my hair will cover it once it has grown back!!
The facial numbness is getting better but my mouth still doesn’t open properly 😁 I was at a fireworks party Saturday and burgers and hotdogs just were not going to happen! In the end I was so hungry I took a hotdog into a dark place where no one could see me while I squashed it as thin as possible before attempting to force it in😂 I made a mess but luckily no one saw!
Next Thursday I hope to actually see Mr Porter, mainly so I can thank him personally for being so brilliant! Spiros told me that I should be having an MRI scan which hopefully show that I don’t need radiotherapy. I also want to ask all my questions and hopefully see the pics that he took mid surgery. I will put some on here i promise, as long as he has caught my best angle….. 😉