The Missing Pieces.

Christmas is going to be very different this year....without my Mum, without Max.
By this time my Mum would have baked hundreds of Italian biscuits and made cannoli and all the specials xmas treats she used make. This year we wont be enjoying any of them. It's sad that Boo wont remember her, that he wont remember her love for cooking and food. The wonderful talent she had that bought us all so much joy, that Max was always in awe of. I have been crying a lot for Mum lately, I miss her terribly. It was her birthday on Monday, it was a prticularly hard day to get through, but all the firsts are, I know because I have already experienced it with Max. I just need to get through this Christmas the best I can and enjoy it for my Boo's sake.

Boo helped me put the Christmas tree up yesterday. He loved helping. The only problem is that he has continued to put the decorations up and down on the tree since yesterday! It was a bittersweet moment, watching him put the decorations up. It was something I always wanted to share with Max. I kept thinking of the discussions I had with Max about when we would upgrade our tree and it was always wait till we have kids and we will get a bigger better one then. So now I have a kid, a bigger tree but no Max.

I bought Boo a Little People Nativity set and gave it to him once we had completed putting the tree up. He loves it. I really gave this gift to him on behalf of my Mum, I know that if she had seen it she would have wanted to buy it for him. You see ever since I can remember, my mother put out a nativity. She would lay down the plastic fake grass and build her nativity with all her ceramic pieces that she had bought from Italy when we went there when I was 5. Over the years some of the pieces had broken and were cracked or glued backed together, it had gone through all of us kids. It didn't come out for a few years not until the grandchildren started arriving then out it came again, every Christmas up until the last.

So now we have our own nativity and I want to put it up every year and remember my Mum.

*Boo insists that the lamb should be in the manger instead of baby Je-sus.

Just Like That.

My Mum is getting much needed rest and seems comfortable in the palliative care hospital. They are looking after her well. She did have a scare the other night when she was taking her antibiotics through the nebuliser, the same antibiotic she has taken for almost six years. My nephew was there visiting and all of a sudden she threw off her mask and tried to yell that she couldn't breath. Her throat was starting to swell up and close. My nephew called the nurses and they managed to settle her, but they had no answers as to why all of a sudden she had this reaction. My nephew knows how horrible it feels because he has the same reaction to strawberries. Scary. It hasn't happened again thankfully.

I have gone to visit her every day. On Friday I picked my sister in law up on the way to see her. We had only been there a few minutes when my sister in laws mobile rang. She was sobbing. Her mother had just told her they have found a cancer on her fathers lung. Fuck. Nobody goes untouched. Cancer is bloody everywhere these days.

Today I watched my Mum follow the nurse into the bathroom for a shower, shuffling and bent over with her walking frame. Having conversations with her has changed, she has become forgetful and confused, I am sure that is the medication. Where did my Supermum go? Just like that. Cancer takes over. Even after watching Max go through it it still surprises me as to how things can change so quickly.

I have been trying to give her some things to look forward to. Like Boos 2nd birthday in a couple of weeks. Can you believe that? I told her if she felt like getting out for a day, then she should come over and see our new home. She is looking forward to that. She had only seen it when it was empty. I so hope she makes it.

Boo trying out anything that has wheels. He always makes my Mum smile.

The Drug Of Champions

I am currently sitting in my parents back yard writing this, the warm winter sun on my back and my fathers budgies chirping very loudly, so loud I can't concentrate.

I spent the night here last night to look after my Mum, she is a little better. Monday night we were all sure it was her last. But if you know my Mum is a fighter, she isn't ready to let go yet. She is a real champion. Thankfully.
She had been weened off her Dexamethasone last week and it was catching up with her. It's such an amazing drug for cancer patients, but the side affects are just so horrible so they can't stay on it for long and have to weened on and off it. It's basically a steroid. Max was amazing on it, he would have a huge appetite which was just so nice to see when he was turning to skin and bones. Wiki tells me "it's use is widespread among prostitutes in Bangladesh in spite of the dangers, because it helps them develop fat easily, an attractive feature in this poor country." So you learn something new everyday. My Mum is weening back onto it again and that is what has given her a bit of life back.

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I am back home now, my sister looked after Boo and took him to daycare for me yesterday, then in the afternoon we switched and she stayed with my Mum last night. Apparently she had a terrible anxiety attack, the worst she has ever had.  Her breathing is atrocious, I have never heard anything like it, she is struggling for breath with makes her anxious. We had been waiting for a bed at the palliative care hospice so she and we can get some respite. We finally got the call this morning. My sister is taking her as I type.

I think it's the best place for her at the moment. She has become very forgetful, so taking her meds on time has been a real task. She gets very breathless just getting up to go to the toilet, everything is a challenge for her. She can't be left alone. My Dad is an emotional wreck he just cries and weeps. Understandably. But it's not doing my mother any good seeing him like this.

It was nice to spend some quality time with my Mum, without Boo. Whilst he was there the other day he pushed her medi alert necklace button. The alarm went off so when they called to check on my Mum, my sister had to tell them that we were just testing the service. Ooops! She loves having him around but I couldn't look after her and Boo at the same time. Her medication makes her doze in and out, but she still manages to knit. My Mum she is a Champion.

All the Signs and What's to Come.

Please keep my Mum in your thoughts and prayers.
She has deteriorated significantly this afternoon.
She has put up an amazing fight but I hate to see her suffer now.

I am finding it difficult to watch I know the signs and what's to come.
My emotions are all over the place, yet not until writing this have I shed a tear.

Up & Down

My Mum came out of hospital today, only because she asked to leave otherwise they would have kept her in there. She hates that hospital it's not where her specialist works out of so she sees lots of other Dr's and she doesn't feel like they look after her as well. She always ends up in a room full of strange people or people that are not mentally stable therefore she does not feel comfortable and rarely gets any rest there. I know they need to be looked after also, but it's just she never has any luck with it. When an ambulance is called this is the hospital they always take her too because it's the closest and the biggest to her home. Anyway whilst she was there she had some tests done and they have found that there is something pushing on her esophagus and that is why she is struggling getting food down and keeping it down. They think it maybe her collapsed lung doing this, so the options they have given her are to have two stents put in one for her good lung and one for esophagus or have some radiotherapy but it's all a guessing game really. There is no guarantee that the radio is going to do anything and if it does it make take up to 3 weeks by then  it could be too late and her esophagus could close up which could mean a horrible feeding tube. Inserting the stents are a high risk procedure for her now, she may not even make it through it. Sigh. She has been terribly emotional, she has been sobbing over the phone which is so unlike her. It has been so upsetting for me to hear her like that. My Dad, he just turned a whopping 88 and he is getting very forgetful. He is no help whatsoever, my Mum is continually worrying about him which she really doesn't need. So tonight she will sleep in her own bed in peace and quiet and hopefully get some real rest. She is going to see her specialist for another opinion and take it from there. Cancer you shit me!

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I received my new camera today, I pulled it out of the box and charged the battery. That is as far as I have got. I know it's stupid, but I kind of don't want to let go of Max's camera, I don't want to abandon it because it was his and so very special to him. He loved it, it was his best friend. I hope that one day, if Boo shows signs of enjoying photography I will give it to him as his first slr although I am sure they would have come a long way since this old model, it would still be a good start up camera for him.
I have been playing around doing some photos here and there of friends kids and of Boo so I can build up my portfolio, you can see them on my FB page. I am picking up a few pieces of equipment, trying to do it all on the cheap for now so I can built up my kit. I am really excited about it all and have many ideas up my sleeve. I often wish Max was here to help me brainstorm, he was a great brainstorming partner, he would tell me how it is. I would have loved for him to have been a part of this, I think he would have been quite excited too.

I go from being excited about my venture to going down in the dumps worrying about my Mum, I am all over the place at the moment. It's quite exhausting.

Boo with Balloons.

It's All Too Familiar.

My Mum is not doing very well. She is deteriorating fast. I feel like I am watching Max all over again, all the signs are there. She has become very breathless, she has become less mobile, she has become very tired, she has lost her appetite, she has lost lots of weight all the signs that that her cancer is starting to beat her.

After seeing the specialist it was decided that she will not be getting any more therapy, radio or chemo. Her lung has partially collapsed and a stent will be inserted into her good lung to avoid the cancer from spreading and closing her airways. Her cancer has decided to grow quickly it has been dormant for so long and has now decided to wake. She really is a remarkable woman and I am so proud that she is my Mum. All the Dr's are amazed at her and the way she keeps fighting. After picking up some scripts for yesterday I was chatting to the pharmacists and he too is amazed at her strength after I explained to him that things had changed recently.

I have never seen my Mum so emotional. She is always teary. Max's death was close to home for her, she saw what she too will go through and she is struggling with it. My Mum gave Max so much strength, she wouldn't let him feel bad and kept telling him to be strong like she was. She gave him so much love like he was her own son. She kissed him and gave him hugs like a mother. Now he is gone she no longer needs to be his mentor, she is letting go. When someone asks how she is, she now tells it how it is. She no longer puts on her brave face for others, she is being honest. I remember when Max got to that point also. He felt like people needed to know the truth, not some bullshit just to make them feel better.

I am making a point of spending more time with my Mum and Dad, they need the help at home and Bubbaboo always makes them both happy. I bought them lunch yesterday and cooked them a nice dinner which she can freeze for those days when she isn't up to cooking. My Dad isn't coping either, he is getting old and he is not accepting that my my mother is dying. Actually I don't think that he has ever accepted that my mother is sick. Yesterday he told me through tears that he wanted to die before my Mum. I know he wont cope when she is gone. Sigh...

Last Friday my sister, Bubbaboo and I took Mum to her first Palliative care appointment. It was all so familiar. I know I will probably never be ready for this, but I am REALLY not ready for this.
Fuck I hate Cancer!

Update on my Mum

After speaking with her specialist my Mums news is not that good. Her cancer has started to spread. When he went in to clean her stent he said it was pretty messy in there, meaning lots of bleeding and growing. She has been coughing up a lot of blood. Usually when he cleans it out he comes back saying it was nice and clean, not this time. He suggested Chemo, I don't think my mother would cope with chemo physically, she is 76 now. I think she will most likely refuse it and prefer to have quality of life than to go through chemo.

He also recommended that she have another stent put into her other lung in the next couple of months as the bad one is most likely going to collapse soon.

To be honest I would never have thought I would have lost my husband before losing my mother. My Mum was diagnosed long before Max and obviously a different Cancer. Max learnt a lot from her courage and attitude to life, it certainly rubbed off. When I was going through IF, my biggest fear was that my future child would never know their grandmother and that my mother would never meet my future child. I wanted them to spend time with them and learn from them. Instead my son has no father to grow up with and learn from. I am grateful they they have at least met Babbaboo and have spent precious time with them both, I just wish it was longer. Wishing my Mum more strength and courage to get through the next stage.
I hate fuck'n cancer, I wish it would give my family a break!

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.