Oli and Me

Hello to my Family, Friends and BB Followers, 

So here's an update of what happened last week and where I am with everything :)

NB- Mum has asked that I increase the font so we're going Large from now on guys! 

Firstly I need to say I think in my 'Results' post I was clear but (and probably due to all the lovely drugs I was on at the time) I thought my tumour was what they call an 'Oligodendroglioma' in actual fact although I was right about my cells (stating that I have a mixed glioma so oligodendrocytes and astrocytoma) my tumour is officially called an Oligoastrocytoma. As mentioned before also I am a Grade 2.

I just wanted to clear that up for anyone who's following and is interested to know- of course you're welcome to google away but I wouldn't because as we know Dr Google can be totally unreliable and down right scary...and as for stats- don't get me started, median survival times are just that, the middle of where people start and sadly end this journey. The truth for me (and many other BT tumour peeps) is that sometimes they get it wrong as all our bodies are different and despite having the same diagnosis they just don't know. All I know is that right now I'm here and I'm living!!!

Also as mentioned before for me I have markers- I can now confirm the first one is called 'IDH1'- and I am IDH1 positive- what this means in layman terms is that I have a cell in the tumour which shows delayed growth (again going back to the Results post this is the part where I talked about the tumour not necessarily growing back). 

I am awaiting the report (long time I know!) to tell me if I also have 1p and19q deletions as this will then indicate if my tumour more long term (and if needed) will respond well to chemo and radiation treatments. My Neurologist was fairly positive that because I have IDH1 that the 1p and 19q should come back positive so for now I still feel that this is all good news in what can sometimes feel like a sea of misery (if you read what Dr Google says that is!)

So last week was my post op follow up appointment- I've officially reached the 3 month post op part. We sadly didn't get to see my actual Neurosurgeon as he's a very busy man but I did see someone within his team who was able to talk me through the op and also confirm a few things such as I do have metal plates and screws in my head- he asked me whether I heard the drill during the op and I was like "Erm No" but actually upon reflection I did and it was literally a millisecond if that- also they are tiny plates and screws but he said this is a technique that they have learnt in the last 5 years or so is a much more effective way of putting us back together again (insert Humpty Dumpty jokes here!)

I was glad to have the above confirmed as it has calmed me in the sense of why I am still numb at the top of my head. Again he said these things will take a long time to fully recover. It was at this point that he said "That's not the prettiest scar I've ever seen"- First reaction in my head was "Gee thanks Mr!" But actually he explained that some peoples scars recover better and some don't do quite as well. My dodgy 'allergic to elastoplast skin' I think probably is what has contributed to the scar not healing as well but it's getting there. He said that the hair won't grow back over the incision part of the wound/scar area but I have got some tufts peaking through around it and also for most of you that know me you know I have enough hair to go around and decorate in a way which will conceal, unless you are birdseye viewing me and then maybe you will win!

Anyways I have another MRI ordered for mid March 2014 and this will give us a clear indication of what Bertie's been not up to (hopefully nothing) but the Neurosurgeon said in a very small percentage of cases sometimes additional surgery is needed but if not I will just continue to see my Neurologist for results and ongoing monitoring. Of course I already have what is commonly known in the BT and Cancer world as 'scanxiety' but it's gotta be done and I envisage the whole MRI thing as just one of those huge walls that you can't climb over, you can't go around but instead you just have to smash straight through!

After my London appointment Mum and I had another one of our dates (we've agreed each time I have a hospital appointment in London to try and do a dinner or theatre show, or both afterwards as a little treat!) In this instance it was both :) We went to Sophie's Steakhouse for a lovely dinner- I would totally recommend this place as it had a great atmosphere and the pre/post theatre menu is such great value! It's also right near Drury Lane so really close for Theatreland!  

Afterwards we went to see the musical 'Once'. I loved it as I have seen the film and I just really appreciated how the actors put their heart and soul into acting, singing and dancing. For people who prefer more visual effects (Mum!) this is not a show for you. But those who appreciate great performance and plays etc this is the one for you! Mum felt the mics were a bit low and she couldn't hear as much so just be aware of this too but if you know the film or book you will probably have no problem in understanding what's going on! 

By confirmation from my wound nurse who I saw the following day the over granulation part is actually now healing (YAY!) the magic Haelan Cream is working and as of today I can say it's only about 1 millimetre (see picture- if we compare this to the last one where its a bit yellowy- gross I know, it's doing so well!)

I finished taking Phenytoin as of last Tuesday and it's a good feeling to know that is now out of my system. I don't know if it was psychosomatic or what but every time I tapered down by 100mg I would get this intense bout of anxiety for a day or two. That was not a good feeling! 

I am now just taking Keppra (Levetiracetam) x 2 500mg tablets per day along with my usual Thyroxine 100mcg which I take to treat Hashimoto's Thyroiditis- this is an underactive thyroid condition which I have been treated for since around the age of 17. It's believed to be a hereditary condition (Both my Nan and Mum suffer with it too). My Anaesthetist was quite interested in this (not sure why but we think he may be involved in a study at the moment which looks at the links between thyroid disease and brain tumours- I will of course up date here on the blog if I hear anything more about this).  

In terms of my moods anxiety is still one of the main things I struggle with but its not necessarily everyday it's just every now and then. I take inspiration from my family, friends and other BT peeps I have met along the way to help me cope. And Carl my boy, I just want to say you are one of the strongest and most positive people I know- He has made some of the nights where I have had a spike in anxiety more bearable and come what may he's there for me...and that's why I'm marrying him...Well not just that, he's a very good egg and of course I love him lots (coupley part over now!)

I have some future posts which I think I'll collate into my 'Anxiety Survival Guide' perhaps and also I know I have mentioned this a lot but I will get around to posting about diet...I even have a wheat free, gluten free and dairy free recipe for you which came about from someone at my local BT group- Thank you Lu!xx

Before I sign off there is one last thing that was brought to my attention last night. Its an e-petition which is demanding that the UK government dedicate more money to brain tumour research and cures. Brain Tumours and Brain Cancer currently receives only around 1% of all UK government funding. 

I have mentioned this before but if you are unaware brain tumours are responsible for the most cancer related deaths in the UK of children and adults under 40. I know it's a horrible statistic and I hate to bring this to your attention but it would really make my day if you are reading my blog right now and reside in the UK if you can please sign the petition here: http://epetitions.direct.gov.uk/petitions/55378

For my international readers you are welcome to sign but I have a feeling it's just for UK residents only- sorry! 

For more information please also see: http://www.braintumourresearch.org/

With loads of love,

Gem xxx

Magic Sunbeams and Haelan Cream

Hi Everyone,

Today's post is an update of where I am currently.

I am pleased to say that the cold has properly gone now - yay!

Secondly my surface wound was re looked at by the wound nurse on Monday 6th Jan and she felt that the silver nitrate treatments were not really working- she has officially diagnosed the area (which is only around 2 inches or so) as what they call over granulation- what this means is the bottom layers of skin are rising above the top layer and not letting the top layer of skin heal properly. Apparently this can be quite common but where you are told by the hospitals- "Do not touch the scabs, they will leave when they want to"...this means that over granulation can be harder to spot as it sits under the scabby parts. How I knew it was not right was by the gunky look and feel and bit of a smell (sorry if TMI but just in case anyone else is dealing with this currently!) Never be worried to see a GP, Nurse or speak with your specialist nurse/team to check this. I had to have around 3-4 appointments before this was actually diagnosed and sorted as over granulation cannot heal itself purely with oral antibiotics, it almost always requires a topical type of treatment. It's not a serious condition by any means but it does require treatment.

As I am roughly 11- 12 weeks post op now the wound should have healed but as the conventional silver nitrate treatment hasn't worked I now have a topical cream called Haelan Cream to help the process. So far so good and I will see the wound nurse again in a few weeks to check if it's all worked. Just to add the rest of the wound has apparently healed very well so we just need to get this part sorted and then we're good to go!

The below picture just shows at the top the magic cream and below picture on the right hand side is the patch where I have over granulation- as I say only around an inch to two inches- the rest of the wound is all doing fine!

Something the specialist wound nurse recommended doing was washing my hair with a mild shampoo or better a baby shampoo- nobody had mentioned this to me previously so for anyone after surgery when you are allowed to wash your hair make sure you wash your hair with a baby shampoo!! This may sound like common sense but when I could wash my hair again around 2-3 weeks post op I just used standard shampoo and conditioner but baby shampoo is supposedly much better for you.

So last week I also had an appointment with the Vocational Rehabilitation team at my hospital in London. They are quite a unique service which is just starting out but they are there to help patients with the transition back to work. As this was my second appointment we agreed on a draft letter which will be sent to my employer. In the letter there are recommendations for what I need to help me return. It's all pretty standard stuff which you would expect such as making sure I have proper phased return hours (with the hope to build back up to full time but this will be assessed), fatigue monitoring, shadowing colleagues or having an assistant to help me initially and making sure I have structured breaks and an hour long lunch break within my day. I am hoping to return to work in February so I will keep you all posted as to how this goes.

My next hospital appointment is 23rd January and this is to have my post op assessment with my Neurosurgeon and to review how everything is going. It is likely then I will be released from the surgery team as I do not require any further surgery currently but I will continue to work with my Neurologist and Specialist Nurse who will monitor me. I am not having an MRI before the appointment on 23rd Jan- I thought I would be but I think they will be using the MRI I had before I left the hospital so the next MRI is likely to be at some point in the early part of this year but hopefully they will let me know more about this. 

So where I live we've had a bit of flooding (I think a lot of people living in the UK are experiencing this right now) but Wednesday was a wonderful sunny day and I took this picture in my living room- I don't know what it is but I always seem to get these great beams of light in that room and I think they look magical. I like this time of year when its a bit cold or crisp as it gives me the chance to
wear some of the hats I have in my beret collection :) I love a good hat!

Lots of love,

Gem