Bernadette

I went ahead with the chemo on Monday. The chemo went really well and there was no pain involved. To use the port a cath they just insert a needle into the port a cath (slight sting when it goes it but nothing compared to getting a drip put in) and then connect a line to it. I decided to take the anti nausea drug Zoffran up front and it worked brilliantly as I was not at all sick. Unfortunately none of the diahorrea drugs are suitable for pregnancy other than codeine which I don’t find to be very effective so that was still an issue for me. They were able to give me all of the chemo in 3 hours which was great. I had the chemo in the HOCA clinic as a day patient and then was admitted to the Mater Private for an overnight stay.

Mum stayed with me and we were both feeling good and the whole thing was quite uneventful until 10pm at night. Unfortunately my body went into some kind of shock and I had excruciating pain through my neck, back, shoulder and abdomen. The pain in my shoulder was around the port a cath and extended down my arm. I could not move at all without severe pain and also started uncontrollably shaking. The whole experience was awful. They gave me panadol and codeine initially without any effect. After calling my doctor they decided to give me a morphine injection which took forever to administer as it added to a pain threshold I was already not coping with and I kept yelling at them to stop. Eventually it took effect and I calmed down. I had tests this morning to check that the port a cath was in correctly and that there were no additional blood clots. All was clear there. They don’t know what caused the reaction as it was the same chemo drugs I have had before the only difference being they were administered a little faster. They don’t know if it was a reaction to the chemo drugs or something to do with the port a cath. We just have to wait and see if it happens again with the next round of chemo.

Given last night was so horrible I popped into Brenda’s office today for her to do a check on Arielle. All was well and she was happily kicking awya and her heart was beating strongly. Hopefully she was blissfully unaware of the dramas of last night.  

So I am still in hospital overnight tonight for observations and then hopefully home tomorrow.

The operation went well. It involved a small (about 4cm) incision in the area between my shoulder and my neck on my right side. For the sake of Arielle I decided to brave it without a general anaestetic and just went with locals and some initial anti anxiety drug. To be honest I surprised myself - I thought I would freak out for 30 minutes feeling all of the pulling and pushing going on but I was fine. They had to use xray to guide them through the vein and I wore a few lead covers over my belly which was rather uncomfortable! Once it was all over I was straight back to eating. Once the locals wore off the pain started and I have been on 4 hourly panadeine since. As long as I dont move I am fine - moving is quite painful though and moving my right arm is not an option - showering had me just about pass out with pain. Apparently the pain will ease in a day or two (fingers crossed). It was done just in time though as the drip that went in for the operation and fluids only lasted 12 hours and they said that was one of the last viable veins they could find.

I went to my ob for a checkup yesterday and all is going well with Arielle. She was kicking and moving about and Brenda is very happy with both our progress. She is starting to kick (Arielle not Brenda) quite a lot now which is reassuring.

So it is home for me today and then back in for chemo again on Monday.

Well I managed to have 9 days at home and it was wonderful. We moved house on the weekend and we are just loving being in our new place. Hopefully work will start on our old place soon and we cannot wait for it to all be done so we can move back in.

I had a little set back this week. My veins decided that they had had enough and were not putting up with this anymore and decided to send some blood clots down the line. So consequently I can no longer have drips put in my arm due to my slack veins. So I am back in hospital to have a small operation to have something called a central line put in. It is basically this little metal thing (a little bigger than a 50 c piece with three smarties stacked on top) that has a line coming off it that gets inserted directly into a large vein near my heart. They cut a small incision above my breast, insert this little metal thing, feed the line into the vein and then close it all back up. Each time I need treatment, a blood transfusion, a blood test or any IV fluids they will just insert a needle into it to give me whatever it is. The needles that go in last a week so it means heaps less needles whilst I am in hospital. It is also very little risk of infection and does not ruin my veins the way the cannulars have. Also the drugs inserted this way wont cause irritation to vein the way it does through the cannular which means no more dealing with hours of pain when I have chemo. They can even use this to administer any drugs I need during the caesar (with the exception of the spinal block obviously!). So with all this good news what is the bad news – well I had to come into hospital today and tomorrow they will do a small operation under a general anaesthetic to insert the central line and then hopefully let me out on Saturday. Then when it is all over I will need another operation to remove it. I have spoken with my obstetrician and she said a general whilst you are pregnant is not ideal however it is not a big risk. So I am anxious about it all but know once it is over it will be a good thing.

My lungs have decided they don’t want to play the game either and it looks like one of the chemo drugs is effecting them but not enough at this stage to remove the drug from my program. I have to have regular lung function tests to keep a close eye on how this particular drug is effecting my lungs and if at any point it becomes toxic to my lungs they will discontinue it.

That is all for now - I’ll update again soon

The doctor decided against a PICC line due to the risk of infection (it is like a permanent drip and you have to cover it to have a shower and it sticks out - risk of Tiernan grabbing it). He said we will keep assessing it but hopefully my veins will hold up until I have Arielle and then they will put a central line in. That is a permanent line under the skin that goes in under an operation with a general anaestietic (which is why I cannot have it whilst pregnant). So the key now is to keep myself well and stay out of hospital other than for chemo to reduce the number of drips I need.

Well yesterday was round 3 of chemo and unfortunately it was not so great. The chemo itself was ok until they put the last drug in. It stung quite severely and they had to slow it down which meant the whole process took about 5 hours. Unfortunately this time I also got very sick. In the end I decided to take the Zoffran anti nausea drug as I had nothing left in me to be sick anymore and I just couldn’t cope. The nurse did say often round 3 is one of the worst as it tends to accumulate in your body - often it does get better after this round - fingers crossed for next time! Luckily mum was with me for the first part of the treatment and then Cam ended up staying overnight to be with me through it all.

It looks like it is home time today and I cannot wait. I am so looking forward to being at home with my two boys - I miss them so, so much. I am going to take it easy this time as I do not want to land back in hospital getting umpteen needles again!

Happy Mothers Day to all of the mums!! Tiernan and Cam are meeting me for lunch today and we will get to go out for a little bit. I have not seen Tiernan for a week so I cannot wait!!

On Friday night I had a blood transfusion and felt much better yesterday. I got to go home for a few hours and spend some time with Cam (Tiernan was with mum and dad). It looks like I am over all of the infections now and chemo is going to go ahead tomorrow. The only issue I have now is that my veins are not holding up to all of the drips and they might have to put a permanent line called a PICC line in. They are going to assess it tomorrow. It is a drip line that goes in the top of your arm and stays there permanently. Apparently when the drugs go in a PICC line they are not painful which would be much better.

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Our shave for a cure was a great success - we have raised nearly $9,000 which is totally amazing considering we thought we might raise one or two thousand between us!! A big thankyou to everyone who donated and everyone who helped in collecting donations for us - we really appreciate it. It is so wonderful to see such amazing support from everyone. Some people have also told me that they have decided to donate blood which is a wonderful thing to do and thankyou for that. Both the Shave for a Cure donations and the blood donations are such worthwhile causes. The Leaukemia Foundation does such amazing work - they have supported me alredy so much through this journey and they will be there for me the whole way. The work they do in finding cures is invaluable - if it were not for research that had previously been done I would not be sitting here knowing that in a year’s time I am going to be better. And blood donations are so fantastic. Certain parts of the blood only last a few days and knowing the way I feel pre and post blood transfusions it must be terrible if your blood is not available when you need a transfusion. I am so grateful to the strangers out there that have allowed me to receive the blood I do which makes me feel 100% better. So big thankyous all round!!!

Yesterday my OB visited me (it was her day off but she knew I was feeling a little down and thought I might want to hear Arielle’s heartbeat - isn’t she sweet). So I got to listen to Arielle’s heartbeat and it made my day.  

Mum visited last night and we had a lovely time together. We got to eat our pizza and just catch up and I just loved it.

I woke this morning feeling quite worn out and it turns out my neutrophils (immune system) is up but my heamoglobin is down so I am having a blood transfusion tonight. The bummer is the drip that I have in is not big enough for blood so I need a new (bigger) one - ouch!! The good news is the blood will make me feel great and I am allowed out for a few hours tomorrow and then allowed to see Tiernan and get out for a few hours on Sunday. That news made my day!!

Well after some fantastic drugs life is on the improve. I am up and about out of bed (finally) and feeling like I can join the land of the living (nice feeling after 2 days of feeling so off). They have delayed the chemo until Monday so I am stuck in here until then but it is all in the name of progress so it is not too bad. Hopefully Tiernan will be well enough to see me on Mothers Day - I will keep my fingers doubly crossed!!! I have lost 1 kg since coming in here which is not great - after being home for a few days the hospital food really is not appealing. Mum is coming to visit tonight and we are going to order pizza - yum yum - that should help the weight gain! Not much else to report - just plodding along now resting and getting better.

Well I got out of hospital last Wednesday and had a lovely day at home with Tiernan. He was so excited to have me home and he was so excited to show me all of his toys again. It was lovely to wake up on Thursday morning in my own bed, cuddled up to my wonderful Cam and then to have Tiernan run in and say good morning mama. Thursday and Friday were spent resting and catching up on bits and pieces whilst Tiernan was at childcare.

Saturday was our big shave day. Dad had coloured his hair red on Thursday and Ben had shaved his hair at work on Friday. On Saturday, dad, Tim and I all had our hair shaved at the hairdresser. Tiernan also had his hair cut. Friends and family turned up to support us and we had a great time - it was really fun.

Unfortunately the weekend ended up being a little more than my body could cope with and on Monday I got a cold. I ended up getting a fever (anything above 37 and I have to call the hospital). So Monday night Cam and I ended up at the Emergency department at the Mater. Unfortunately blood tests showed I had gone into a neutropenic phase which basically means I have no immune system. So I was admitted to hospital. The neutropenic phase is not good for two reasons - firstly I will catch any bug /disease that I am exposed to and secondly my body has no fighting power against it. So at the moment my simple cold has developed into a chest and sinus infection with my lungs operating at 47% capacity and I am on 4 different drugs to fight that. Then I get another drug to try to build an immune system up again. I am stuck in here now and not allowed visitors until I get back my immune system. As I am not well they may have to delay tomorrow’s chemo. Being pregnant the most I can have for the pain (one of the drugs causes bad back and leg pain) is panadol. So I am feeling a little sore and sorry for myself at the moment. I am in better spirits tonight though and haven’t had a crying, feel like my world is coming to an end episode for about 6 hours now. At least this episode has taught me that my body is a little more fragile than I realised and that when I do get home I really do need to take it easy. The only way to learn is the hard way sometimes!!

Well after being told not to expect the cancer to have shrunk this morning Dr Taylor told me that he had the most wonderful news that the cancer has reacted very well to the chemo and is now 8cm x 3cm. He was incredibly pleased with the results. Not only has the cancer shrunk but all of the inflamation that was around must have gone. Apparently when they did the initial scans part of the mass showing would have been the cancer (about 14 x 6cm) and the rest was likely to have been inflamed tissue. He said usually they would have done other tests to have confirmed this but because I was pregnant they couldn’t. All of the daily steroids have done their job and taken away all of the inflammation and the chemo has done a brilliant job of killing off the cancer. He said that this often happens when the mass is so large to start with as that type of mass reacts the best with the chemo. He said the it will slow down now and will still probably take the 8 months to go altogether but this makes it very promising that they will totally get rid of it. He said sometimes this type of initial reaction does mean that the cancer becomes static at around 5 - 6 months and stops reacting to chemo but by that stage it will be small enough to look at other options.

So today I am so happy that not only does my body seem to be coping so well with the chemo but the chemo is working so well. I feel like I am on top of the world. I get to go home today to my two wonderful boys and I cannot wait. Three weeks ago we received the most devastating news and only 21 days later life is looking so much brighter. Well now that I am going home the blogs will probably ease off a little. I will still keep you posted but hopefully life will just be continuing as usual as possible!