Friday, February 24, 2012


Lately I have been thinking alot about my hair. This is very unusual for me since I've long had a love/hate relationship with it.

Just like Charlotte, I started off as a bald baby, and eventually grew some wavy, snowy white hair. I've always been aware that this is unusual. I have memories as a young child where people have stopped and commented on it. My hair has always been very fine, very wispy, and very slow growing. As I grew up, there wasn't too much that we could do with it. I think I had my first ponytail when I started school and Mum would put it up into a "fountain". I eventually managed to grow it long enough to put it into a bun for ballet but that took a long time. However when I stopped dancing (in grade 7) I chopped it all off.

High school didn't improve my self-esteem in relationship to my hair. I was teased about it. People would call me albino, or the boys would make lewd comments. I was even accused of bleaching it. Of course I did some of the usual teenage things like trying to dye it. It doesn't hold a dye very well so they would invariably wash out in a week or two, which was probably a good thing given that I'm sure I went a few different shades of pink and orange.

By university it had started to become a little darker although I did have one occasion where it turned bright pink (it may or may not have happened at 3am after one too many drinks). I still felt self conscious about it. Particularly since I seemed to go through a period where every hairdresser I went to would try to sell me a lavender (or similar) shampoo "to try and take the yellow out of it".

I have never gone to the hairdressers all that frequently. At the moment, I seem to only manage once or twice a year. I simply don't have the inclination to spend that much money. I did go through a phase in my mid to late twenties when I was working and had more money. I discovered that I could put "lowlights" in my hair and that a half head of foils did wonders for my appearance (and lightened the hip pocket too). However as time goes on my hair has become naturally darker (but lightens in the sun).

And then Charlotte was born. At first she was a baldy baby, but it became evident that she would have the same snowy white hair as I did. Except hers is curly, and oh so beautiful. I run my hands through her hair everyday and marvel at how wonderful it is. People stop and comment on how lovely her blonde curly hair is. What has once been something about myself that I have loathed, is now one of the most marvellous things about my daughter; and so it has made me re-evaluate my own self image. 

This last week I have become a little fixated on my hair. The radiation was supposed to make it fall out, but I wasn't sure how much or where. It seems that I have lost some hair (I've been running my hands through it all week watching strand by strand come away) but not in one specific spot. So if you look at my head, the hair on the left side is a little thinner. Which is a relief.

From now on, I am going to appreciate each and every stand of my fine, wispy, slow growing hair and make sure that Charlotte knows just how special her and her hair is.

Thursday, February 23, 2012

I've lost a year

I've lost a year. No, not from a tumour induced amnesia, but time has passed so quickly. Angus turned 11 months a few days ago. That means it is only one month until his birthday. I truly can't believe that I am starting to plan 1st his birthday party.

I started to write a post a month ago about what he is doing, but then got distracted and never finished it. So much has happened for him. We are at that delightful stage where every day, he does something new.

The day of Charlotte's birthday he began pulling himself up to standing. A few days later he was cruising. He was tentative at first, but now he walks around the furniture, walls, anything really. And he has, only once or twice, begun to let go and stand unaided. Of course now he can stand he can also reach things so the bookcases are getting a work out and he loves to try and grab the fan.

Given that he was cruising, I really didn't think that he would bother to start all fours crawling. He had been commando crawling for quite some time and was very proficient at it. Especially on the tiles he would just scoot along. However this month he has started to properly crawl. It may have helped that he escaped outside; and commando crawling on the pavers would have been a bit painful.

His personality is really starting to shine through. Generally he is a happy little boy. We now have big waves, a cute little hand wave, and also clapping. He loves playing with toys and will amuse himself for ages. His favourite thing to do is push the buttons on one of his toys which makes music. Except it doesn't make music every time you push it, only every second time. So he will push it twice quickly, stand up and have a bop to the music, then when it stops he quickly pushes it twice again.

I am also learning that he is sensitive. If you tell him “NO” because he has done something naughty, he will immediately screw up his little face and start crying. It's hard to stay mad at him when he makes such a cute face. 

Angus still isn't talking though. There are more and more words that consistenly sound like a word. He definitely says "Dad", and occassionally "Cat". It sounds like he is saying "look" when he grabs something and I thought he may have said remote when grabbing the tv remote but that is probably my imagination. Today we were singing a nursery rhyme and once I stopped he continued babbling along in the tune which was very cute and impressive. Still no "Mum" though.

Sleep wise I think he has improved. He is sleeping through on the odd occasion. But mostly he is up at midnight, 2 am, then usually 5.30am. It's no wonder I'm tired. We've also dropped his morning nap as he really only seemed to need one daytime nap.

Feeding is still an issue. After seeing the paediatrician, we stopped giving him dairy and saw an immediate improvement in his vomiting (in that it stopped). So we are continuing with the lactose free formula. I have dropped to only 2 day breastfeeds and one night time one which is good for me. I probably should just stop altogether but I like doing it. Otherwise he is still having 3 meals a day (usually weetbix for breakfast; avocado or vegemite sandwich for lunch; and dinner). I feel terrible but lately I've been buying the packets of baby food for dinner. I just don't have the energy, or the inclination, to make up his own meals. Where we have leftovers, (and it's something he'll eat) he is getting our meals but otherwise it is the packets. I know that there is nothing wrong with it, but it is one of the things that I never wanted to do on a regular basis. Still, he put on 400gm last month which is a big improvement and bumps him up to the 10th percentile again.

Right now we are having a terrible time with teething – well I think it is teething. Last month his 5th tooth appeared without any warning whatsoever so I have to think he is working on the others. He has terrible dirty nappies (and I think he has developed thrush) and is not sleeping great at night, but he is happy during the day.

I love that every day brings something new. And I can't wait for his party! Time to celebrate a difficult year, even if it has gone quickly.

The two week mark

Today we went back to see my specialist (David) for the two week check-up. (well two weeks and one day to be precise). He was very happy that I had recovered from my cold/flu and seemed really happy with my progress. I got the sense that the fact I'd made it through the first 2 weeks without needing medications was a big deal. He had a good look at my head and was happy with it all and was optimistic that I wouldn't lose too much hair. David said that they had used an arc rather than one focused spot of radiation, so hair loss should be minimal.

Unfortunately he couldn't tell me what the next few weeks would be like. I can expect increasing fatigue and possibly nausea. On Tuesday this week I had a bout of vomiting, although after a lie down I felt a lot better. The fatigue is really increasing though. It seems to creep up on me then hit me suddenly. I'm also finding that getting up at night to Angus is getting really hard. I wake up, but I'm drowsy, and it takes me a while to get going. David's recommendation was to keep exercising so that I can increase my general stamina. I didn't make it to the gym this morning because of our appointment (and James let me have a sleep in as we had a terrible night with Angus) but I have to make myself keep going no matter what.

David said now that the focus should be on managing symptoms into the future. We talked about the balance clinic which is at UQ (University of Queensland) and he has written me a referral for them. And I've also got another script for a balance/nausea drug called SERC which I've read mixed things about (one report seemed to think that it was really only a placebo while others have shouted it's benefits). But it is nice to know think that we are shifting focus to recovery rather than treatment.

Nevertheless, I am still anxious about the next few weeks and what they will bring. I don't need to see him again in the short term, but he wants me to come back in 6 months and have a follow up MRI then which suits me.

And I'll keep taking it one day at a time.

Monday, February 20, 2012

The importance of sharing

I read a news article today about the Home and Away actress Ada Nicodemou where she announced her pregnancy by IVF. I am happy for her just as I am for anyone who announces a pregnancy. However I'm also pleased to see her openly discussing her IVF journey. Too often, people choose to keep silent on their fertility struggles.

This article prompted an online discussion about personal privacy, where I saw one person comment that something like IVF should be kept private. While I respect that each person has the right to decide what information they share about their life, it saddens me that some people feel that they must keep their fertility struggles to themselves.

We received some advice at the beginning of our treatment that not telling people around us might be easier. The nurses/counsellors at the IVF clinic talked about how others may not understand, that we might get misguided advice, and most of all that dealing with a negative result can be difficult if eveyone knows what is happening.

After a few months of keeping it quiet, I literally felt like I was about to burst out of my skin. I started to tell some friends, to talk about it more with my family, and to bring it up at work. Instantly I felt like a weight had been lifted. The emotional support we started to get was great. And as soon as I started to share, other people also started to talk about their journeys which they too had kept quiet.

Having to tell people that we had yet another BFN was painful. But then I realised that I wanted my friends and family to be there for me, to support me, no matter what the outcome was. Of course we got a lot of advice: just relax and it will happen, try these herbs, these positions, stop IVF and just have sex, just adopt. Every time I heard something like this it reinforced for me why it is so important to continue to talk about infertility.

More and more I've realised that society in general doesn't understand IVF. People don't understand what is involved in the causes of infertility, and they definitely don't understand the process of IVF. Most significantly, society generally doesn't understand the utter pain and heartbreak that is part of infertility. So I believe in sharing our stories; the good, the bad, the pain and the elation. Even if it helps one person to feel that they are not alone, or to help someone know what a family member is going through, then it is worth it.

What do you think? Do you think we should be sharing our stories?

Sunday, February 19, 2012

Being Henny Penny

At the moment I feel a bit like Henny Penny - waiting for the sky to fall in.

After being so unwell last weekend, by Tuesday I was definitely improving. I think it was a combination of the antibiotics kicking in and also having the reassurance from my specialist that it wasn't directly from the radiation.

By Thursday I was feeling fantastic. Not just good - fantastic! I went to the gym and did an intense workout (although I got my max. heart rate up a little too high so maybe it was too intense). I didn't even have to have a nap that afternoon. Friday I was still feeling good so I went to see a friend although that was very tiring.

Saturday I was feeling tired again and I noticed that I had a slight burn on my forehead. I had a spot about the size of a 20 cent piece which had blistered. It was a little bit sore - like a mild sunburn and it has eased with some burn cream. But it brought me back to reality. Today I have been feeling quite sick but I still managed to go to the gym and a trip to the shops. It was while we were at the shops that I got hit suddenly with fatigue; I could hardly walk one step in front of the other.

I know I am on tenterhooks, just waiting for the next awful symptom to hit. This week is when I expect the fatigue to increase. In the meantime, I am trying to take one day at a time which is why I'm relishing in the good days. I can't begin to express how good I felt on Thursday. My mind was clear, I was only a little bit dizzy, and nowhere near as tired. It has given me hope that at the end of this I will be back to my normal self. Not that I really know what that is since it has been over 5 years of IVF, yucky pregnancy, newborns, and blobby.

Monday, February 13, 2012

Half of my life

17 years ago today, James and I decided that we might try to be girlfriend and boyfriend. Being Valentines day, we had had a date; he cooked me lasagne, I bought him a rose. 17 years, half of my life, and we are still together.

Being valentines day, I could write a whole lot of schmalsy stuff about how he is the best  husband in the world and how I love him dearly. I could demand flowers and chocolates as an outward sign of his love. But I don't need to (ok, well truthfully I could do with some chocolate, but James has already bought me a block of Lindt which is sitting in the fridge). This morning he walked downstairs, kissed me on the cheek, and said "I love you" and that is all I need.

Because he shows me how much he loves me everyday. Oh it hasn't all been happy families. We have had a few rough patches, but we worked through them. Doing IVF was tough on us. I won't lie, there were some times when I felt some resentment, that because of his fertility issues I was going through such heartache. But then I would realise that we are doing this together.

And now the tables have been reversed, and he is here for me. He was sitting next to me at the doctors' when we found out about blobby. He held my hand as the neurosurgeon told us surgery wasn't possible; and dried my tears. He drove me to appointment after appointment and took time off work, knowing he would have to make it up later. He sat next to me yesterday, holding my hand, as we waited to see if my brain was swelling; not knowing what may happen.

And through all of this he has been a wonderful, caring father. 

So I don't need any of those things that come on Valentine's day. I already have everything I need.

Still sick

These last few days have been very stressful for me. After seeing my GP last Friday and starting antibiotics, I was hoping for things to improve. I spent all weekend analysing every symptom - was the headache worse; do I feel more nauseous. This morning I decided that no the headache wasn't worse, but yes the nausea and dizziness were definitely worse. I couldn't move without the room moving with me. I wouldn't trust my driving. So I called the clinic and spoke to a nurse who arranged for me to see my specialist.

After waiting well over an hour, and coughing on everyone in the waiting room, we finally saw him. His verdict, I am unwell. But he didn't think that it was from the radiation. He did seem slightly unsure of why I was so unwell but essentially thought it was a virus and that the tumour and treatment were exacerbating it. My specialist was a little concerned about my bp (160/100) but in the context of being unwell he didn't want to do anything about it.

So I am just to keep up with the cold and flu remedies, take some stematil for the dizziness, and rest. If I'm still no better by Thursday I will go back to see him and start on steroids then.

I am hugely relieved that my brain is not swelling and about to burst out of my nostrils. I am struggling a lot with not knowing whether something is caused by the radiation, or some terrible side effect is going to happen. Nevertheless, I will try to stop thinking about it and just focus on beating this virus.

Friday, February 10, 2012

Bye bye immune system

I was on such a high on Thursday. I was feeling great despite only getting a few hours sleep thanks to the kids. At one point during the night I even realised that the tinnitus had decreased slightly. I still had that annoying cough though. All throughout Thursday it got worse and worse. Thursday night I had hardly any sleep as I didn't stop coughing all night. ALL night.

So Friday we set off to my GP. I was feeling to light headed to drive so James came too. And sure enough, it looks like I have a sinus/chest infection. My GP was so pleased to hear about the treatment though. I love that I have a good GP who I trust and who actually cares about me. But she did reinforce that the radiation will make me tired, and will weaken my immune system. My glands were swollen so it was obvious that my body was working to fight something.

Today I feel awful. I got a bit of relief from the coughing but I just feel awful. My chest/ribs hurt from coughing. My throat hurts. My head is all spinny and weird feeling. I feel like I've been hit by a truck. And I'm feeling a bit demoralised. I was sure I could sail through this without any issues, maybe just need a few naps here and there. I don't think James realises how sick I feel. He did a very good job of waking me up last night when Angus woke up (he seemed to panic about it and wanted to give him some nurofen when he really needed a cuddle). Right now I'm feeling a little scared about what the next few weeks may bring.

Tuesday, February 7, 2012

Where's my tinfoil hat!

I am all zapped. Blobby is hopefully shrivelling up and dying as we speak, er type.

I've been a little bit emotional all day but not as bad as I thought. I took the kids swimming this morning then just had time for a cuppa before heading in. Saying goodbye as they dropped me off was hard. I had to wait a fair while in the waiting room before being seen - long enough to read a trashy mag cover to cover. (I found it quite amusing actually - it was from October last year and they were pretty on the money for some stories; Is Jessica Simpson pregnant - yes she is! Will Kim Kardashian divorce - yes she did! amusing). They gave me a stemetil when I got there and a dexamethasone (sp?) which would help reduce swelling. I was most worried about this chronic cough I've got and I think focusing on that helped to ease the worries about the actual procedure.

When it was finally my turn they took me into the "rainforest" room, and got me all positioned with my lovely mask. They took an x-ray to get me into position, then it started. There was a slight buzzing sound but generally nothing else to indicate that they were shooting beams of radiation into my head. I felt a tingly sensation all over my head though even though they kept telling me I shouldn't feel anything. Maybe  I was imagining it, but I did keep thinking "die blobby die" so maybe it was that. And then it was done. I think I spent longer in the waiting room.

I spoke with the specialist afterwards who said that it had all gone very well (not quite sure how he can tell) and he seemed to think my side effects would be minimal. I have to go back and see him in 2 weeks for a followup but that is it.

So I'm feeling ok now. The tingling sensation has eased off and I have a dull ache in my head. I have to watch that as it can be a sign of increased swelling but so far it has eased with panadol. My face went all red and blotchy before, and I have a pain from the roof of my mouth up to behind my eyes but otherwise everything is good.

I'm feeling quite calm now. I'm a bit tired but no more than usual. I can't believe that it is all over. The specialist acknowledged that the lead up to treatment is quite stressful and the actual treatment is fairly straightforward. Now we have to wait and see what the next few weeks will bring in terms of symptoms (the next two weeks especially). And I had better make myself a tinfoil hat so the aliens can't see my brain!! tee hee.

Here is a picture of the mask I took when we got home:

The mask!

Hi good looking! Just like a mirror only...freaky

Gosh I have a wierd shaped head

Zapping time

Tomorrow is zapping day. The last few days have been pretty rough. I am extremely anxious. I am having some irrational fears about the radiation: that I will feel it burning, that I will have a reaction immediately, that I will vomit in the mask, that I will accidentally move and they will fry my brain. Aaagh. I have actually had a cough for the last few days so that may be a valid thing to worry about. However I do think it is stress related since I've tried every cough medicine I can think of and nothing makes it go away. I guess if I cough too much when I'm there they will just send me home.

I have to be there 30 minutes early so that I can have a pre-med. I think that is an anti-nausea drug but I'm also hoping for a sedative. The session should only last an hour. That is it. Then I go home. It is very bizarre. Then I have to learn to live with blobby as he is, and just get on with it. I had a not so pleasant phone call from the clinic yesterday where they said that on the day, the specialist may decided to so fractionated therapy (30 doses) but they called tonight and confirmed that it is just one. Which is such a relief as I couldn't handle 6 weeks of treatment. Just the logistics alone of what to do with the kids was overwhelming. The other part to the phone call was to talk about the billing. They hadn't really explained it all to me properly and I had been a bit naive with it all. But essentially they want payment in full, then I take the receipt to medicare to get reimbursed. That means I have to find $15,500. Ouch. There really isn't a better way to do it as the medicare schedule is only $1800. That is simply ridiculous for something so big. I had a mini freakout about it but have since calmed down. We have a credit card we use for emergencies which we can use. I guess this qualifies as an emergency.

Truthfully I am a bit over it all. I am so tired and drained. Blobby is consuming alot of me at the moment and I just want to get on with living. But I had a lovely thing happen last week. The baby forum that I have been apart of before Charlotte was born arranged a voucher for a local day spa for me. I was so touched that I promptly burst into tears. I have never been to a day spa before, I've never even had a facial (and the face mask for radiation doesn't count!). To know that these wonderful women (most of whom I've never met) cared so much that they arranged this is uplifting. And it gives me something to look forward to when all this is over.