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?
Monday, February 20, 2012
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.
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.
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.
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.
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:
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.
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.
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