His Last Days - Friday 7th May 2010

I have decided the only way I can get Max's last days out is to write them day by day. I originally thought I could write the lot in one go but I can't do it because so much happened in such a short amount of time. I don't think I could cope emotionally and that is what has refrained me from even getting started but I really need to write this down. So day by day it is.


Friday 7th May 2010

We had installed the hospital bed at home a couple of days prior. Max was finally a little bit more comfortable after sitting and sleeping in the his new recliner chair for almost a week. The recliner gave him bed sores and he was in a lot of pain, between his sores his broken humorous and his usual tumor pains he was very uncomfortable.
I had set up a baby monitor in the bedroom so if Max needed me I could hear him call out. He had become very, very breathless so speaking loudly was an effort. That morning it was the usual routine of the nurses coming over to check on him and give him a sponge bath. Since he was now in the bed he was a lot harder to maneuver so two nurses came to sponge him down. He got on well with them and knew them quite well since they had been visiting him at home for many months now. As the nurses washed simultaneously Max joked with them saying that he felt like he was in a car wash. They all had a laugh.

During the week it was decided that Max would no longer take oral medication instead he was going to have a subcutaneous medication pump inserted.  He wasn't managing getting all his pain medications down any more. The day before I had filled his pill boxes with his meds and after completing them I knocked the whole thing over, there were 100's of tablets all over the floor. I was really glad I didn't have to do them ever again. So the nurses inserted the pump in the morning but we needed to wait to get a palliative care Dr to come over and sign up his scripts and then get them filled. The house was filled with people all day coming in and out, that was what it was like the last few weeks. Drs Nurse, counselors, people dropping off or installing aids, oxygen tanks etc. I had also reached out to my family and friends and asked for help by this stage so I had extra hands helping with Bubbaboo whilst I spoke to Dr's or nurses or had to run around getting scripts filled etc. By the afternoon I had his medications and the nurses came back to administer his meds which was mainly morphine,  anti-nausea drugs and something to help him sleep. If he needed any top ups I needed to administer it, so I had the lessons whilst my mum and sister looked after Bubbaboo.

That evening my girlfriend M came around with some dinner and to help out but the evenings where ok once Bubbabo was down for the night. So she sat and had a chat to Max whilst I had a break from him. He was very demanding and kept needing me to shuffle him up or down or help with this or that. You can imagine how frustrated he was when he had only the use of one arm and very little strength left to lift himself in the bed. I sat in the lounge room and could hear their conversation through the baby monitor, talking about music and realising that they appreciated the same kind of music a conversation they obviously had never had. Max was struggling getting his words out, his breath was so laboured but I knew he was really enjoyed having a chat. As I listened to them talk I was envious because I hadn't been able to have a conversation like that with him for weeks. Because all I could do was help him with this and help him with that and we could never just have a chat because it always ended up with me trying to make him comfortable. They started talking about holidays and Max was showing M our holiday photo book of Thailand, our best ever holiday together. I had walked into the room when M asked Max what the best thing about the holiday was he replied "that apart from the food and the beaches the best thing was definitely having Vee with me to share it with". I smiled at him and blew him a kiss.

Max was becoming quite drowsy now that he was on the medication. He seemed to have had the best night sleep he had had in quite a while, which meant I had a decent nights sleep too. It had been a long while.

Memories everywhere.

I love having Max around me and even if I didn't have all his photos around the house I know he is with me. But it's hard, really hard. I cry as soon as something is triggered. Going to Darling Harbour with Bea triggered moments, we walked the path that Max and I had walked many times it was one of our regular outings. Walking past restaurants we had enjoyed meals at, pubs we drank beers at and had long chats and laughs just enjoying each others company. We did almost everything together, so every where I go I have moments of sadness that he is no longer with me. Even doing the grocery shopping or going to a mens store to buy my dad a birthday gift, knowing that I am no longer shopping for Max. It' makes me sad. Going to be bed is the most difficult, not having him by my side. No longer spooning me, feeling his warm body against mine with his hands cupped around my breasts, feeling and hearing his breath on my ear. I cry myself to sleep almost every night. Fuck I miss him so much, I thought it was meant to get easier but it's not.

Walk with me.

I still can't write or at least haven't written that post, the one I want to write. I'll get there, when the time is right I suppose.

I have been totally buried in "Our Backyard Fundraiser" when I say buried I literally mean buried, my house was wall to wall filled with prizes and supplies we couldn't sit anywhere, even my bedroom was filled with beers and drinks and boxes for it and just when I thought there was enough, more things would pile in. I am not at all complaining I was overwhelmed by the generosity of people it really has blown me away.

The Fundraiser was a great success. After so much rain for weeks on end, Sydney pulled out a magical sunny day. I am sure Max had something to do with that. He was certainly with us all day I felt his presence as we celebrated the day in his memory. We had 130 guests! We had a huge marquee with a floor, a jumping castle, a photobooth, silent auctions, raffles, gummi bear guessing competition, helium balloons, a live band (my nephews band) and lucky door prizes.  Oh and the sausage sizzle and a cafe machine with  heaps of cakes and sweets. We handed out gift thak you bags filled with goodies, which were a hit.  Everything was donated, it was unbelievable! It kept everyone entertained all day. Friends and family are still talking about how much fun they had and what a great cause. That makes me happy and Max would be just over the moon. Selfishly the whole event, even though lots of work, was really rewarding. We raised $11,543 for the Rainbows for Kate Foundation I am hoping we made some difference. Max's artworks sold at the live auction, one going for $400 and the other going for $600 he would be so delighted with that! People are already talking about the "next one" hold on! I am still recovering from this one and did I ever even mention a next one ? It's too early to even contemplate.
The beautiful team from the RBK foundation were there, including Kates husband and gorgeous girls. He presented me with this fantastic gift, which means so much to me. I love it!

It's still not over yet, I now have all the thank yous to get out and I still haven't done Max's funeral thank yous yet. So I will still be busy, busy. I am keeping busy with Bubbaboo also, he is growing into one cheeky boy, but good cheeky. You can see his little personalty coming through and he constantly makes me smile. He was tossed around to so many arms at the fundraiser and he wasn't worried one bit.

Bea and BP came to visit this week. They had actually booked their tickets to come to the first fundraiser that was planned before Max passed away which was just so lovely of them. Since that didn't happen they changed their dates. It was so nice to see them and spend some time with them both. Bea and PB had an eventful start to the trip but I will let Bea tell that story if she wishes.  I tried to be hospitalable and Bea reassured me I was but I felt like crap with a head cold and unwinding from the fundraiser.  We had a lovely day out to Darling Harbour , it was freezing and the day started off wet but we did get some blue sky by the end of it. BP is one very clever little boy, he is amazing and a real cutie!  I loved watching Bubbaboo interact,  they were really good together, although it was challenging trying to get a photo of them together. I soon realised that 2 year olds unlike 9.5 month olds don't sit still for very long.

I am sure I have so much more to say about this entire week but I am just too tired, I should get to bed and rest up. But I will leave you with some pics of the fundrasier.

If you would like to donate to the foundation please visit the Rainbows for Kate website and make a donation online.

The backyard setup.

The Prizes & Silent Auctions

 

Max's Artwork up for Live Auction.

The Jumping Castle in action.

The sweets.

I miss you so much...

Why am I still asking "Why? Why did this happen to such a beautiful man ? "

Just to break the silence.

We got away for the weekend. My cousin is house minding this wonderful house on huge farm with a horse and couple of prize winning donkeys and a dog and invited us to stay. We were all sisters, my sister and I, a mutual friend and her sister and my two cousins, sisters and of course Bubaboo. Even all the animals were girls! It was a real girly weekend.


We walked, we painted, we cooked, we ate, we drank and best of all we laughed....all whilst Max was watching. I know he was with me the entire time. Before his health went down hill quickly, we were organising a little holiday on a farm with animals, I got as far as researching it. I am sure he loved this place just as we did.

This is Bubaboos first painting he has ever done apart from his hand print when he was born. 

I can see a person riding a horse.

What do you see ?

Here he is at work on his second painting.