A week in hospital....Kanes 40th

Saturday 31^st March

After meeting with Gary on Thursday and we spoke about pain relief (as I am experiencing excruciating pain especially each morning) he put me on stronger pain meds and said I would be extra tired and need to take it even easier. I couldn’t imagine taking it even easier as I’m not doing much as it is.

Anyway, had my immunotherapy treatment on Thursday I and felt fine just tired as per usual, so came home to bed and slept the whole day and night…woke up to have meds and then went back to sleep.
The new routine now has been that I’ve been waking up from pain at 4:30am and Kane has to help me get up. I wake not being able to get out of bed and end up crying.
Then I go back to bed and I get up at 7am and have brekky and then take my meds and go back to sleep. It’s been crap….can’t live like that and can’t experience this pain.

So on Good Friday woke up ad wasn’t feeling great but didn’t want the girls to miss out on a family tradition. So we went at about 1:30pm, Kane and I stayed for a couple hrs and then had to leave as the noise was too much for me. I went home straight to bed and then it was the same routine, I woke up at 8pm had my meds and went back to sleep and the woke up at 4:30am in pain.

On the Saturday I was determined to do something fun with the girls even though I wasn’t feeling great. So we went to see Peter Rabbit. It was a great movie, but I was so tired I was falling asleep and really couldn’t get into it, but the kids loved it. Afterwards went home straight bed for a while. Then I said I would try and spend some quality time with the girls so we watched “Flinstones” on Netflix in me bed…….terrible movie but it was nice quality time with the girls. I went to sleep at 9pm and really was a massive stretch but was so nice to be awake for a little while.

Easter Sunday 1^st April

Woke up not feeling great but not too bad was able to do the Easter egg hunt with the kids. They love Easter sooo much. This year we a lot less eggs but they had soo much fun.

After the hunt I went back to sleep and woke up at 12:30pm. We quickly got ready and went to Mum’s for Easter lunch. We got there at about 1:30pm and stayed for about 2hrs. Gary has put me on these Fentanyl patches (slow release morphine patches) that I need to change every 3 days. I’m on a patch that is 25mg and it was time to change it after having it from Thursday.  The kids had so much fun doing another Easter egg hunt and an egg and spoon race. The girls ended up staying at Nana Hazel’s that night so that they’re Eater wasn’t cut short.

Kane and I left and it was the same routine I went straight to bed and woke up for meds and then didn’t wake up till the morning. I need to let Gary know because he said not to suffer with pain over the weekend if I was still feeling pain on the fentanyl that I needed to call him I may need to spend a couple of days in hospital until they get the pain sorted out.

Monday 2^nd April
Called Gary but didn’t hear back from him today. I actually started to feel a bit better which was good because I was having my first visitors. Grace and Bev came over and stayed for a couple of hours and I was awake and felt not too bad. Grace brought over a yummy chickpea soup…thanks Grace it was delicious. Was so nice to have visitors and be out of bed for a little while.

After they left I was really tired and went back to sleep.

The patches are not really working the are supposed to work over night..but I’m still waking up in a lot of pain.

Tuesday 2^nd April 

Called Gary again and he said I needed to go into hospital. He said he would organise a stay in Brighton Cabrini and let me know.

Today the girls got picked up by Maggie and Anastasia. Maggie is Harper’s kinder teacher and was Kiara’s teacher 2 years ago….but they are more like family. They were so excited. Maggie picked them up and they went to see “Sherlock Gnomes” and then went to lunch, and the park and a play date at home…..they were in heaven.

Maggie then dropped them off just after 4pm and then the we’re picked up by Eve and Abby (our neighbours from Plummer rd) for a playdate and sleepover…..just amazing. They made pizza and cupcakes and had an awesome time.

Gary called me back and said that have a room for me tomorrow at 11am at Brighton Cabrini

Wednesday 3^rd April

The girls spent the day with Eve and Abby which was perfect timing, we’re so lucky to have awesome friends.

Mum then took me in to Cabrini Brighton. I was in a private rm, Room 8. Was very comfortable and I just couldn’t wait to get the pain under control. While I was waiting for the room I was falling asleep. Anyway, it wasn’t long till I got my room and they got me on pain meds.

At 11:40am they gave me a morphine injection in my tummy.

Then it was all about getting on with managing more pain relief. Mum stayed with me most of the day in hospital to keep me company.

I was asking when they were going to give me the MRI, we were hoping tomorrow so I don’t have to come back on the 16^th when they had it planned….the earlier the better. Really wanting a measure from the MRI as it will be the first time I had a measure on my brain and I can see if the radiotherapy and immunotherapy has been working on my brain. Haven’t had a measure since my radiotherapy since January this year. 

The Kane came in with the girls and it was great to see them after they’re sleepover at Eve’s house.

Wayne and Fleur came over that evening and brought the girls some dinner. Then it was time to leave as Harper was really emotional and wanted me to come home.

That night the doctor decided to increase my fentanyl from 25mg to 50mg, which should help with slow release pain relief.

At 8pm I had a blood test. This is to determine my blood count and if I need a blood transfusion.

They’ve prescribed another type of morphine which is quick release but doesn’t long. They are wafers that you stick under your tongue and they’re called Abstral, but it’s just another type of morphine. 

Had to have some abstral tonight.

Thursday

Didn’t sleep very well tonight…I forgot to take tamazapan (sleeping tablet) so woke up at 4:30am, not in pain but as the morning got on the pain increased and I needed pain relief. So in the morning I had I had dexamethasone, (abstral) under tongue.

Dad came over at 7am to see me and he stayed for about an hour, Kane popped in before work as well. I’m eating so much food it’s ridiculous.  Had to fast from 8am today because I was having my CT scan and MRI. Very excited to finally get my MRI as it is the first measure on my brain.

I had to take another fentanyl at 10am before I went I go to CT scan 
I had the CT scan at 11am and told I would have the MRI at 2pm.
Then at 12noon Dr Tesfai visited. Dr Tesfai is the Dr who told e I had lung cancer in June last year. I haven’t seen him since that day. It was great to see him. He just came in for a chat to see how I was going.
Then the nurse came in and added a tube to my port so they could give me the contrast for the MRI and also do all my future bloods through the port. This is awesome because I have crappy veins and its much easier on my body.

3pm came and I still haven’t had my MRI. They ended up giving it to me at 4pm. When I got back Mum and Kane and the girls were waiting for me. Mum came over with prawn curry, rice, Fugard and mint chutney. Rachael then came over and picked up the kids and took them to her house for a sleepover.

That night at 8pm they gave me an anti clotting injection in my tummy. They also gave me 2 Lyrica which is another from of morphine but helps with nerve pain and they gave me another 100ml of fentanyl.
The dr was able to give us a little information from the scan. She said that it looks like the tumour in my lung has shrunk but they also found a blood clot that they are worried about because it can be quiet dangerous. So they are going to treat it with a med called Zeralto. I need to take 2 Zeralto every day for 3 weeks and then take it once a day for the rest of my life.
They also decided to increase the fentanyl patches from 50mg to 75mg. This is to help with slow release pain. I just want to know if I’m having a blood transfusion and when will I have it.
A big problem I have at the moment is constipation, I’m taking lots of laxatives to help me to go, eventually today I emptied bowels….HOORAY!!! Tonight I remember to take tamazapan so that I could have a good nights sleep.

Friday 6th

Woke up at 4:30am but not in pain but as the morning got on the pain increased.
The Dr came in at 6:30pm and decided I needed more pain relief that they could increase my ordine from 3-5mg to 10 mg of ordine 10 ml 
He also said the tumour shrunk a bit in my lung and tumour in my brain also shrunk but they also said that was they’re opinion and I really need professionals to say.

Dad came over again this morning and stayed for an hour. Kane also came over and said he is going to ask Rachael if the girls can stay another night as he needs a night to himself. Rachael of course was happy to have the girls. Later that day Patty and Ally came over and came with some gorgeous flowers. Not long after they arrived Katie and Luna arrived. So cute to see Luna she made me smile.

I then had to take more meds. I had to take 2 times abstral and Zarelto and 10ml ordine 1:30pm

Later I was in still pain so needed to take more abstral , so at 3pm I had another 2 Abstral.

Not long after that Ian porter arrived. Katie and Luna left. Ian spoke to me about next steps.... He's a legend and is helping move things around so I'm not here for Kane's birthday on Tuesday.... They wanted me here for another week and I said I needed to be out of here on Monday night so I can celebrate Kane’s birthday on Tuesday. Ian said he would be happy for me to do that as long as I could walk.

He said in that case we’ll have the bone scan on Monday to see where I need the radiation and then depending on what they find I may have chemo on Thursday or they may wait till next week. Then I could meet with him on Friday to discuss the results of the bone scan and where we will need to do radiation.

Then at 4pm the Palliative care lady arrived and spoke about increasing my pain meds which they have dramatically e.g I was on 3-5mg of ordine now I'm on 30mg 

I was only 25mg fentanyl now I'm on 75mg on my arm and 300-400mg orally. From 75mg to 475mg 

Also have morphine injections which is heavy duty. I take all this as well as my normal pain meds which have been increased. 
I take150mg of Lyrica at night and 75mg in the morning my increased fentanyl patches and dexamethasone. So it's fair to say I'm on heaps of pain meds.
On top of this I have my normal anti -nausea meds, and now an anti -clotting med I take twice a day because I have a blood clot in my lung
I was waiting all day for them to give me the blood transfusion, so the kids could come and visit after. I haven’t seen them today and they wanted Rachael to bring them in, but I didn’t want them to see blood as it will bother them. Kane came in after work, not long after Chad arrived for a visit, while he was there Kayla arrived. Chad left and Kane left for a but of a boys night. 
They only arrived at 7pm for the transfusion of 520mls of blood. The nurses said I would take 2hrs. Kane called Rachael and told her that they only just started the transfusion, so I couldn’t see the girls tonight. As it turned out it took longer than 2 hrs. The girls were happy though, they made cupcakes and were singing and dancing.

It was great to Kayla and we had a good catch up.

Saturday 6th 

My Dad came at 7am for his usual catch up and then Sean arrived before he started work this morning. They left about 9:30pm.

Then Kane girls arrived at 10am and stayed till 12:20pm. I missed them yesterday and it was great to see them. They left to have a swim at Aunty Rachael’s and enjoy the day.

Then I had more visitors (such a lucky girl) Jan and Steph arrived 1pm. Was great to see them as Jan is nearly 20 weeks pregnant. They bought me a gorgeous lion cushion.

Then they left and Kane and girls came back with Karen Burstin. She came over with some gorgeous happy socks and a yummy salted caramel cake. 

She stayed for a little while and it was lovely to see her.

Kids were soooo tired, Harper feel asleep and was soo sooky had to get Kane to leave with them.

 After Kane left I thought I would use the time to finally get back to everyone’s messages, which I did. Then I started looking at clothes online. Went on to the iconic website never looked at it before. I blame Kayla for this, because when she came over on Friday she was telling me that the Iconic store has 60% off and she bought some awesome jeans from there.

Sunday 8^th April

Anyway, fell asleep with my phone in my hand. When I woke up at 7am I had a look at my phone and realised I ordered 3 dresses and a jacket. Far out drugs!!!! Luckily I didn't go too crazy....need to make sure I go to sleep without my phone in my hands. When I told Kane about what I did we were freaking out, because I managed to order 4 items and pay for them without knowing. Then I showed him what I bought and realised I didn’t even send them to our house, I sent them to Brunswick. I have no idea how I managed to do this, I don’t even think I like what I got. Kane managed to get the items sent to us 😊😊😊

Dad came over for his usual visit and I told him that I ordered clothes without knowing. He couldn’t believe it.

Then at 10:30am Dr John came in and told me some great news.....
He said the Lung tumour is smaller, from 21mm to 18mm and the brain tumours have “greatly” reduced less than 1cm. 

He doesn’t know how many tumours there are, but they've reduced “greatly” and should continue to do so. He said he is happy that the report used the word “greatly”.  The thing is the tumour in my lung is the same size as it was when they found it but during my treatment it shrunk and grew. Now it has shrunk again back to the original size….which is still good news as it means its working in the right direction. The main thing we are happy about is the measure of the tumours in the brain. Great to know the radiation and immunotherapy is working. Dr said the radiation will continue to work so we should expect more shrinkage!!!!!

Also, he is pushing the bone scan for tomorrow Monday 9th

About time we got some good news and we can really enjoy Kane's birthday 
Later that day at about midday Kane, the girls and mum (Larraine) arrived. It was good to see Larraine as I haven’t seen her in a very long time. Then my mum arrived as well with chicken curry and rice as I am getting over the hospital food. Then Raquel and Aldrin arrived for a visit too. Everyone arrived at the same time. They were all so happy about the news as we were waiting on some brain results and now we have them and they are good.
Then I told Kane about what I did overnight. How I managed to order 4 items of clothing from the iconic without even knowing. I told him how I woke up with 4 items purchased on my phone.

We couldn’t understand how I did it. It meant that I picked the items and paid for them and got them sent to our home. Aldrin and Raquel thought it was a master mind and I did it on purpose so that I could buy anything I want in the future and say I was sleeping when I did it. Then when I went to show them what I bought I realised I didn’t even send them to our house. I sent it to an address in Brunswick. I have no idea how I managed to do this, I don’t even think I like what I got. Kane managed to get the items sent to us 😊😊😊

Everyone thought it was a strategy and I did it on purpose.

Aldrin and Raxy then left. Larraine and the kids stayed and had a good visit.

Monday 9th  

Dad came at 7am and stayed for about an hr
Kane arrived before work at 7:15am and stayed for about 30 mins 
Then the nurse came in and told me I am getting the bone scan today. I said I wanted the scan today because I didn't want to miss Kane's birthday and I would leave and come back another time of they couldn't do it today. They took more blood and then they got me out of the hospital at 10:30am to transport me to Malvern for a scan at 11am. 

When I arrived at Malvern I met with a nurse who prepped me for the bone scan. They injected me with Technetium hdp which is a radioactive tracer that goes to the bone. Then they took me to get the scan. I've had so many different scans and this one was different again. 

I went in and they strapped me feet together with tape and then wrapped my arms so I couldn't move. Then I went through a machine for 8 mins that took photos from head to toe. I then have to wait till 3:30pm till the radioactive tracer gets into the bones and do the test all over again. 

That will show exactly the areas in bone that have the tumours and the areas they need to treat with radiotherapy maybe this week or next week. 

Then at 3:30pm I went back in this time the scan went for 30 mins and will show all the areas the bone has cancer and needs to be treated. I had the scan and then Kane came to meet me to pick me up. I’m excited because its finally time to go home and start celebrating Kane’s birthday tomorrow.

Blog not complete but wanted something up before Kane's birthday tomorrow. Will complete after his birthday.