Friday, December 23, 2011

Merry Christmas everyone

In case you hadn't noticed, Santa is nearly here. We have been looking forward to this a long time. This is the first year that Charlotte really has been aware about what is happening and it has been delightful.

She began to get excited in November when she saw the first television ad (I think they were using the song "It's beginning to look alot like Christmas"). It took ALOT of explaining that Christmas wasn't today, it was a few weeks away. But already she was excited.

On December 1st we put up the tree. This was such a wonderful day. Charlotte helped put all the decorations on (all on the one branch mind you) and James lifted her up to put the star on the tree. I had a bit of a teary moment when I put one particular ornament on. It is one I got made up this year that has all of our names on it. I had wanted one for years, but wanted to wait until our family is complete, which it now is.

We have done lots of other Christmas activities. We drew and painted a tree and Santa and have slowly decorated them over the weeks. We made snowflakes and stars from glitter (aah glitter, it makes me smile as it works it's shiny little spots of joy from one end of the house to the other. Poor Angus is still covered in it). And decorated a gingerbread house. We have been to one Carols in the Park which she liked, and went to a Qld Symphony Orchestra Christmas Concert (which she didn't. Sat there the entire time with her hands over her head. sigh).

Unfortunately she is afraid of Santa. We tried to get the seemingly compulsory Santa photo and once she saw Santa she freaked. She wouldn't even stand near him, or sit on my lap. And then Angus started to cry so we have a picture of me and Angus with Santa. I found this whole experience quite unnerving. The parents in front of us seemed intent on getting the best shot. We then had to pay quite a bit of money for one photo. Gone are the times you can just sit on Santa's knee for a chat, it was all about the photo. I don't think we will do it again, we have got the baby photo and that is enough.

Despite being afraid of him Charlotte comes down the stairs every morning and asks has "Christmas father" been yet. I can't wait until tomorrow morning to see her face. We are then having a quiet day with just James' brother here.

But not every Christmas has been filled with such joy and anticipation. The years doing IVF were hard as we realised what we didn't have. One year we even hid away and went to New York for Christmas (which was so much fun). I know how lucky we are this year and I am treasuring every moment.

So to each and every one of you, I hope you have a wonderful Christmas and can find peace and joy, and if you can't do that, then find a good bottle of champagne to toast the day away!

Thursday, December 22, 2011

Not what I wanted to hear

Right well, where to start. We saw the neurosurgeon yesterday.

His viewpoint was that the tumour is slow growing, it isn't life threatening, and that I should have a repeat MRI in 6 months and take it from there. He said that the dizziness is caused by compression of the vestibular neurons (not the actual nerve), and it likely played a part in the pregnancy, but he wasn't so sure about the nausea and fatigue. I acknowledged all that, then promptly burst into tears. I told him that I am not coping with this dizziness at all. So then he explained more the risks of surgery.

There are two approaches. The retro-sigmoid approach goes through the back of the skull but is risky as you have to avoid major arteries, the cerebellum and a few other things. He didn't seem keen to do that. Plus I have read on Dr Google there is a large risk that you will develop ongoing headaches.

The second goes through the auditory canal which is safer on surrounding structures but I would be guaranteed to lose hearing and the balance nerve would be affected (which he said you may recover balance after a period of time). He didn't seem all that encouraging about either option, and I *think* he was implying that it may or may not help my symptoms.

So from his viewpoint, I wait and see and just live with the symptoms, or I risk surgery and all of it's risks. The thought of going deaf is sickening. The thought of living with constant dizziness is sickening. I just don't know what to do.

He has referred me on to a radiosurgeon to talk about gamma knife radiation which I don't know much about. So that appointment is next year. He thought that may be a good solution.

I am not sure what I made of his bedside manner. I don't think he was prepared to deal with a bawling wreck and asked if I thought I was depressed. I think I might be. His solution was pills, stop breastfeeding (not happy about that), and a daily walk to the pub to get a gin and tonic (his definition of exercise).

Last night I had to take half a valium just to calm down. I am so frustrated that no-one seems to take the balance issues seriously. When I think back I have been feeling sick for nearly 2 years. I hear people complain about morning sickness that lasts a few weeks, well imagine it for years and years with no relief in sight!

I know that I can get a second opinion, however I also know that on some level he is right. I need to wait and see if the tumour grows. I was prepared to wait until April so a little bit longer isn't that big a deal. I need to weigh up the risks so I'm trying to do some proper research into it and might take a trip up to the uni and use their databases.

In the meantime I need to get busy with Christmas, and keep taking one day at a time.

Monday, December 19, 2011

Seconds of beauty

I came across this link yesterday to the Seconds of Beauty project. It is a short film competition paying homage to the chronograph, run by Montblanc. Competitors are asked to upload a one second video that captures beauty. The seconds are then compiled into play lists. The results are remarkable and breathtaking in their simplicity and their elegance.

I watched this video dozens of times yesterday, because in one minute it captured what I have been feeling. I am trying not to be too morbid, but ever since the diagnosis, I am acutely aware that life can end far too soon. I have been trying to take in every moment, to revel in the simple things that create our life, and celebrate beauty everyday. I have this intense feeling that I need to enjoy every moment, because I don't know if I will have another one like it. I know I shouldn't be feeling like this, but I am.

And it is amazing what can happen in a second. I find myself staring at things that I would never normally worry about and marvelling at them. A butterfly landing on a leaf, the rustle of trees blowing in the wind. The tight curl of a frangipani flower just about to bloom. The sunlight hitting the trees in the late afternoon creating a glow, or the light striking our pool creating a dappled, shimmering effect. And then there is the children, that slight dimple that forms in Angus's cheek when he is smiling, the giggle that they share, Charlotte's turn of phrase (that's right! she will say), the look on her face as she pours glitter everywhere.

Of course there are always the big milestones that we remember and that I wish I had captured on film. I wish we had a picture of the moment their embryo's were created. I have the image of when Angus was born, Charlotte's first steps, Angus's first word (which is coming any day now I can feel it!). I remember acutely staring at Charlotte's eyelashes when she was just a few weeks old in the dead of night. But for the moment I am trying to capture those little moments that make up our day and are so important to our existence.

What is your second of beauty?

Seconds Of Beauty - 1st round compilation from The Beauty Of A Second on Vimeo.

Sunday, December 18, 2011

but that's not me

Time seems to moving very slowly at the moment. It is 6 sleeps to "christmas father" coming as Charlotte keeps reminding us. And it is 3 sleeps until we see the neurosurgeon.

I am having good and bad days. After seeing the specialist nearly two weeks ago, I had a very bad day with a few tears. Even though he was very reassuring, I still felt down. And then I had a good day or two. I am trying to take the approach that it is just a growth, and it is essentially routine elective surgery to get rid of it. This very zen ideology was working until I went to the pharmacy to get the script for the anti-histamine that the ENT had prescribed. He had called earlier in the day after speaking with a neurologist, and they had decided that it was worth trying it even though the side effects and effect on breasfteeding were not desirable. Given it is a bit nasty, the pharmacist wanted to have a big chat with me about it and of course asked why I was taking it. The look on her face when I had to say brain tumour brought me back down to earth. Because no matter how you spin it, it is still a brain tumour.

Unfortunately the side effects of the medication are too much for me. They made me so groggy. I only took half a tablet and was a wreck for most of the next day. Angus was up twice during the night and I simply couldn't function to take care of him. Thank goodness it was the weekend and James could help. I got up with Angus at 6 (he was up at 12, then between 2-5) so James could sleep but by 8am I was in tears I was so groggy. Thankfully he go up then so I crashed out - but I just can't do that everyday!

So I guess I just have to put up with the dizziness. There are times when I feel ok, then I move my head and everything spins. I get so frustrated with myself because I am so tired. I don't know if it is just from non-sleeping children or from blobby. I keep trying to tell myself to just get over it and keep on going but it gets hard.

Then this weekend I had another reality check. We were at a friend's Christmas bbq and another friend I didn't know (who had a newborn) started talking about how hard it would be to be a parent to young children and have cancer or something. A few awkard silences and we started talking about me and blobby. This friend knows someone who did have cancer while pregnant, and started a charity called Mummy's wish. They help out mums with cancer with practical support, babysitting, cleaning, food hampers and so on. It sounds a wonderful organisation and she strongly recommended I get in touch.

I had a look at their website last night. They help out lots of mum's with cancer, going through chemo and radiation. But surely that's not me? I don't have cancer. Yet the more I looked, the more like me they seemed. So I'm not sure where I fit into this world of tumours and cancer. I know that next year will be hard when I have surgery and if I need radiation; and I will definitly need help. However I don't want to admit that I fall into this group of mums just yet. So for the moment I will still try to be zen about it, and just try to ignore the fact that I have a tumour in my head.

Wednesday, December 7, 2011

Still not the right one

I saw the second specialist today - an ENT - who has referred me onto another specialist. sigh. Apparently he isn't the specialist in these sorts of tumours.

Nevertheless he was able to answer alot of questions. Essentially he seemed very optimistic. He said this is a good tumour to get in terms of it's position and it is fairly easy to get too. I had some scans done back in the year 2000 (gosh that feels like a lifetime ago) and he thinks he can actually see it then even though at the time they couldn't. That too is a good thing - it means it is slower growing than we thought.

He does think that my symptoms are caused by the tumour, which really is a relief. It means that I am not imagining it, or just overexaggerating small events. Of course he said this with a caveat that they never really know for sure but it does seem to make sense. He even said the fatigue was directly related as trying to manage balance issues makes you tired. That is such a weight off me as I have really struggled with fatigue. I keep thinking I am just lazy, or not coping with motherhood as I get tired so quickly. It is hard to describe, I can wake up with alot of energy (even after a crappy night) but as soon as we do an activity I am bone crushingly tired. But now it all makes sense. He has prescribed some tablets that I can take to see if they manage the headaches I've been having as well as the dizziness/nausea etc but I need to see if I can take them while breastfeeding.

His opinion was that I would need surgery - but whether that was in the next few months or the next few years was up to me. Although he seemed to think within the next 12 months would be a good move. But then he isn't the surgeon so I may get another opinion on that. Essentially he said it wasn't life threatening but that if my quality of life has been impacted (it has) then it needs to come out.

So the next step is to see a neurosurgeon which I will do just before Christmas. I am feeling really down tonight. I feel like when we got told we needed IVF. Something huge has just happened but on the outside I look normal. And yet nothing will ever be the same again. The specialist gave the impression that this was all fairly routine, and nothing to worry about, but of course I am worried. I need to reconcile the fact that something is growing in my head and making me sick, yet I can leave it there for a while and not do a thing about it. I feel like we should be having surgery NOW yet that isn't going to happen. Realistically I am considering next March/April when I know Mum and Dad can be here for me and I would have stopped breastfeeding.

In the meantime I need to pull myself out of this funk I'm in. Some lovely people have told me how strong I am but I don't feel it. I feel tired and dejected. I need to start planning Christmas and Charlotte's birthday, maybe that will take my mind off everything.

Saturday, December 3, 2011

More things you don't want to hear...

I wrote a post ages ago about things you don't want to hear when you are going through IVF. Well I can now write one about dealing with a brain tumour. It has taken me a staggeringly short amount of time to become annoyed at peoples responses and also what people say in general.

A saying that is very common is "Two words you don't want to hear...". I've used it myself when I wrote about the threatened miscarriage. Tonight I heard it on the news. "Two words you don't want to hear is...seafood shortage". Umm really? A friend recently posted on facebook "Two words you don't want to hear is...upgrade declined". Umm wow. How about two words you don't want to hear is brain tumour! I'm really struggling with that emotion - people are entitled to their first world problems, but escalating a first world problem such as lack of seafood to the same status as blobby doesn't sit well with me.

Another thing I'm struggling with is people saying "Oh good that it's benign". Yes it is very good that it is benign. It means that it hasn't spread to other areas. But it doesn't mean harmless. It is still pressing on vital brain structures. We can't just leave it there. I will probably still need really big surgery and treatment to get rid of it. Yes I know I'm so lucky it isn't malignant but gee whiz, I don't see it as "good that it is benign". Good would be not having it in the first place.

I'm sure there will be more sayings as time goes on that push those buttons so I should learn to deal with them. Maybe that is two words I should learn - more patience.