The lows of rehabiliation

I'm still here, I just haven't had the writing mojo lately. After being so excited to be beyond what I thought was the time frame for further radiation symptoms, these past few weeks have been hard.

Two weeks ago I went to the UQ Neurology and Balance clinic. They did all sorts of test like making me stand with my eyes closed, walk with my eyes closed, move my head back and forth and so on. All of the things I have been avoiding for the past few months. I scored well on these tests. However, I scared myself. I was working very hard to stay upright, to keep moving. Subjectively, the dizziness was severe. And I paid for it the next day - I was simply exhausted. I also felt overwhelmed, demoralised, and dejected. I don't feel like I've really recovered since then.

I am supposed to do head turning exercises and walking up to 5 times a day. I simply don't have that time with the kids around. Nor do I feel like I have the energy. After one week (which was already busy as it was Angus' birthday week and party) I couldn't see any improvement. The next physio session was just as challenging, however the next day I didn't feel quite as shattered. Since then I think I can see some improvement.

Then on the weekend I had another setback. I developed an intense pain in my ear and at the base of my skull - just where blobby is. I could feel a real pressure sensation in my ear. Sunday morning I started vomiting so of course my paranoia levels went into overdrive (given that vomiting can be a sign of increasing intracranial pressure). We found a GP to just check my ears for signs of an infection, which was negative. I was then left with the option of going up to emergency, or just waiting it out. Thankfully the pain eased. However it is still there. An offhand comment from a friend has made me wonder if it is actually musculoskeletal from the exercises, so I have decided to give them a rest and see if it improves.

I hate this paranoia. I am scared about everything. Another friend did put this into perspective though - I had some symptoms which no-one thought were serious and it turned out to be a brain tumour. Of course I'm going to be paranoid about any twinge or niggle.

Right now I feel I'm in the doldrums a bit. I can't see that my symptoms will improve. I don't know if or when I will feel comfortable with blobby being there. I know I need to work on my new "normal" but I'm not ready to do that yet. I am actually more fatigued now than a few weeks ago, so I'm not sure if the radiation is still affecting me, or whether this is just how I'm going to be. I still feel like I'm "sick", which I hate.

I'm hoping that some fun easter activities we have planned will break this cycle. One silver lining I can take from this is that my empathy as a health professional will have increased dramatically. I can now truly appreciate how hard rehabilitation is (not that I didn't realise before, but it is different from the patients side).

Over the hump

Tomorrow will be 6 weeks since I had the radio-surgery. I feel like the worst of the radiation symptoms has passed. I no longer have that terrible fatigue or the nausea. I feel somewhat lighter. Last week I haven't desperately needed a daytime nap every day. Only on some days. I'm still tired though, and I'm still dizzy. It seems that I have two or three good days, and then a shocking bad day. Which is great; that is a big improvement. I actually think I am feeling slightly better than what I was before the radiation. And when I think back to last year, I know I am feeling better than in the months leading up to Christmas.

I think there are a few reasons why overall I am feeling better. Going to the gym has been a great thing for me. I've been able to increase my intensity during workouts, and my length of time. I have been forcing myself to go even when I don't feel well. There have only been a few days when I've felt too sick to go. But I try to force myself because I see it as a part of the rehabiliation process. I think that activity has helped to increase my stamina, and help my brain with the dizziness.  Knowing that we are past the diagnosis and treatment stage is also important. My focus now needs to be on rehabilitation and recovery. Tomorrow I am going to the balance and neurology clinic at UQ so hopefully they can help with some of the dizziness.

I know this is going to be a slow process. The radiation can take up to 2 years to work. There are a few stages I need to pass before I can really relax. Around 3 months the tumour starts to die (hopefully) and from 6-12 months after the radiation I am at risk of something called tumour necrosis where the dying tumour causes swelling and other nasty things to happen. I imagine that I will be symptom watching for a while, which in itself is exhausting.

This is probably the one thing I'm struggling with. How do I not let blobby run my life? How do I stop thinking about it? Yet how do I go on as normal when I have a tumour in my head? I am going to have to work out a way to just ignore him and get on with it. Nevertheless, it helps that now I can continue to focus on rehabilitation and look to the future. 

Knowing my limitations

It is the end of another long week. Generally, it has been better than last week. I don't feel as sick. However I am fatigued. The fatigue is strange - it isn't like a tiredness. In fact I have a tiny bit of insomnia. However my body is tired. I feel this heaviness. Sitting still, I feel fine; but then I try to get up and my body doesn't want to move. I've needed to have a nap every day. If I don't, then I get really nauseous, and quite frankly I don't cope at all.

On Friday though, I felt great. Still fatigued, but a lot more energetic. I managed to play with the kids all afternoon which made me feel so happy. I can now see the light at the end of the tunnel. My symptoms have actually improved a little bit. I am still dizzy but nowhere near as much as usual. My plan now is to contact the balance and rehabilitation clinic at UQ and see if they can help me further.


Yesterday we had a lovely day out. We went to Redcliffe lagoon - a great big pool; playground; park area, all by the sea. We had a ball. Charlotte swam and swam and ran, and played, and picked up shells. It was great. However it was exhausting. Today I was shattered. For the first time in a few weeks I didn't feel up to going to the gym. Going back to bed was my best option. I get really upset at days like this. But I need to keep reminding myself that I am improving. I think I am over the worst of it. I just need to know my limitations and not push myself.

Just when it all seemed too hard..

This week has been tough. I haven't been as sick as that first week but it has still been hard. It is just over 3 weeks now since the treatment, and for the first time in years I can say that time is going so slow.

I started the week with terrible headaches. Of course, any sort of twinge I'm now paranoid about brain swelling. After a few days of chronic headaches I was feeling very stressed. With the headaches also came some nausea, and dizziness. And an intense fear that I would have a seizure. I don't know why I am suddenly paranoid about this; it's not like I've ever had one. Nevertheless, I asked James what he would do if I had one and his response - "Turn you on your side and put a peg on your tongue". Uh huh. Perhaps it's time we did a first aid course.

Wednesday I developed some blisters on the roof of my mouth and a burning sensation. I don't know if there were because of the radiation or not, but it did feel like a burn. It went away fairly quickly (I may have popped them) which was reassuring. And the next day brought more nausea.

Today was a bad day emotionally. We got some bad news from medicare in that our rebate has stalled - we should still get some money back but it was a bit demoralising. I don't often feel this way, but today I realised I have a brain tumour. And that isn't fair. And it sucks. And I'm sick.

Just when I felt like slipping into the doldrums, a couple of really lovely things happened. Mamamia (a site I frequently read and comment on) ran a competition to provide a use for Angelina Jolie's right leg. I put a comment, and received the most likes, and won! It was only something small, but I am so grateful to everyone who voted (even if some of them were a sympathy vote although go the Mummy power) but it has made me supremely happy.

And then this afternoon we got a lovely surprise. You may remember we had some portraits done with Katrina Christ Photography  last year which are devine. We picked the prints up around the time of my diagnosis and I had spoken to her about it. Today she spontaneously visited with a cd of ALL of the photos we had done during the shoot. It was such a lovely gesture, and I am touched beyond words.

After such a lovely end to a tough week, I need to pull myself out of these doldrums, and keep taking it one day at a time. Because tomorrow is a new day. I will still have a tumour, but I will be one day closer to beating him and living my life to it's fullest.

Hair

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.

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 1^st 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 5^th 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.