New wheels but more speed bumps.

Hi All,

David here again. Jenni didn't actually directly ask me to post but I'm unsure whether or not she will get the chance to post again or not. She has surprised us all a few times in the past few weeks, months and years and maybe she will again.

Jenni has lost the use of her legs completely now as of Thursday and requires a lifting machine to get transfer her from her recliner (where she spends nearly 24 hours a day) to her new electric wheelchair. Her sister, Caz, organised it, I'm not sure on the details how, but it seems she has a contact and it's all for free as far as I can understand. Jack and I arrived on Friday night after our week at work and school and here was Jenni meeting us at the door on her new wheels! lol. She was loving the freedom to easily get outside and back again but unfortunately the getting in and out of it takes some time and effort. I don't think she even got into it today as she was feeling so tired, sore and sick that we just wheeled her recliner outside. She hasn't had the time or energy to even look at her computer to check her blog, however I have the feeling her eyesight may be deteriorating too. I set the laptop up for her to read your comments and it was just too much for her so i read them out to her (unfortunately we only made it through half of them today). She was so appreciative of all your love and support and we both were reduced to tears before too many comments were read. Thank you all so much. All the time Jack was buzzing around on her new electric wheelchair! lol. "Hey Mum and Dad, look how fast it goes in second! Dad, can I put it in third?" "No!!" says dad as Jack nearly takes out the table and chairs under the gazebo! Someone was having fun!

Jenni's Mum, sisters (Caz and Liz) and her brother Greg have been with Jenni a lot these past few weeks which has been great for Jenni and they have had some wonderful reminiscing conversations. Caz, Liz and their Grandma, Nana Jo, came down on Melbourne Cup Day, complete with hats (sorry, fascinators!) and platters of yummy food. Lucky for Jack and I we turned up to help eat it! Lee continues to be a tower of strength for her too and looked after Jack for a few hours for me today so I could get a start on some school work and writing school reports.

All in all though it hasn't been a great week. Jenni continues to grow weaker and at times she feels she has just had enough (as she told me this morning). She had several "bad" day this week, including today. The pain continues to break through every few hours and she is just so tired. sorry to have to publish mush of this post but it is what it is. Once again, she is so grateful for all of your support (as am I) and I will try to read her some more comments tomorrow.

Take care and thank you all again.

David.

Still Hanging In There...

Hello my dear, dear, friends! I am so sorry I have not posted sooner, I truly thought I'd be , blogging all the time but unfortunately I have become even weaker and sleep takes up a large part of the equation. I also have a lot of visitors, which is lovely, but I am extremely tired afterwards and need a sleep. I have lost so much strength it is quite amazing how even having a shower, which I require assistance with, absolutely drains me. Anyway you all mean so much to me and your love and support helps so very much and I know it helps David too, you have all been so kind to him, and I get frustrated because I want to post you updates all the time but I just seem to run out of time so easily. Anyway, I have slept all morning and for a change, have some time to my self when I'm not exhausted so I am grateful that I can 'talk' to you.

I'll just quickly tell you where I'm at in regards to pain as I know you worry. My pain is being managed really well now, they have worked out the correct mix and I really don't suffer for long. Basically they knock me out, which since my pain seems to come at night, hasn't been a problem. I am being very well looked after, have beautiful gardens surrounding my room, people are being very supportive and I really couldn't ask for more.

I am not sure how long I have left, I suspect not very long, as I really am so very weak. I can walk a little with the help of a walker but not very far really so need the wheelchair. I have lost so much weight, even though I try to eat the cancer takes about 80% of what I eat so you can imagine it is difficult to keep the weight on especially when I don't have much of an appetite. The time is definitely approaching but I am coping okay with it somehow. I fluctuate between being alright and thinking at least all of the pain and just weakness etc will be gone, to sobbing with a grief so deep and raw that it actually frightens me. I think that filling my time with Jack, Jamie and David, then family and friends, really helps a lot. You just need a lot of love and it keeps you afloat, I am so very fortunate in so many ways and I choose to focus on those things, they are the things that matter, I am so lucky to have David, he will be, and already is, a great dad, he is strong enough to be a good support and then there is all the other love and care I receive that has kept me going, including yours on this blog, it has all meant so much to me and helped me through what is a very difficult time.

Now I no I haven't written that much but at least I've touched base, I will try and update a little more often but at least know that if I haven't it's because I am so fatigued that I just can't, not because I don't want to. I will have to finish up now, I am also much slower at typing because my hands are a bit numb so that is frustrating too, I just want to race along and then I have to go back and fix up mistakes, still, at least I can manage and it is lovely to be able to connect with you all. Please know how much your love, prayers and support mean to me, I just don't know how to put into words what is such an amazing thing to come from a blog. You have stood by me consistantly and I just love you all so very, very much, you have made an enormous difference to my life and my journey through this disease. I will update again soon and if for whatever reason, I can't then I am sure David will let you know what is going on. Love to you all and thank you.

How Did I Get Here???

Well what a journey it has been! I look back at the things I've gone through that I really would not have believed I could without going insane. Somehow though, I am still in one piece. I guess the biggest thing was having Jack move to Warragul to live with his dad. I am so lucky that he was able to do so because I simply couldn't take care of him anymore and he was getting frustrated and let down all to often but it was still a gut wrenching experience. I didn't know what to expect in terms of how Jack would cope but I was so very happy and comforted when he settled in so well. David has been wonderful and really supported Jack through his transition to a new school. He loves Jack so much and takes such good care of him so Jack has managed so very well and is happy in himself. He now gets to do so much more, they play basketball after school and tennis and the past few nights Jack has been helping mow the lawn at the little farm they live at. Davids parents are also very supportive of both Dave and Jack, Dave knows he only has to pick up the phone and they can go and have a home cooked meal which is a blessing as Dave is still working and is a sole parent. They also help out with picking Jack up after school some nights and things like that, so I feel so very lucky and so comforted knowing that my little boy is in such good hands, even so, it has been hard for me and I have shed many tears of despair but somehow I bounce back and that is largely due to David as well, as he brings Jack to me every single weekend from Friday night to Sunday afternoon. This has been just so good for Jack and I, it really helps to know that we just get through the busy school week and then we are together again. So very precious and I am just so grateful to David for being so wonderful to us both, it's a lot when he works all week and then has to pack everything up and come down but he doesn't complain and just keeps it all together somehow. Thank God for Lee also, she has really been such a rock and is there for Dave if he needs a break. She will happily give up her time to either stay with Jack and I so Dave can go have some time out or she will take Jack for a while and spend real quality time with him. She just does whatever is needed, even just picking up or dropping off, some groceries here or there and also visits me at least twice a week, she is a wonderful friend and I am so blessed to have her in my life.

I think the best way to fill you all in on what has been happening is to do it over several posts. I'll just sort of continue on with each new post otherwise it will be one massive big post and it will take me ages to get it out to you so we will just do installments and this is installment one, so I will post this as is and then continue on in the next post. Thank you so, so much for your continued love and support it really means so much and I am so happy to be able to 'talk' to you again, much love back soon - Jen xx

I Am Back On The Air...

Hello my dear, dear, friends! I am so excited because I have finally set up a laptop and internet connection here at hospice so I can keep in touch with all of you! I will keep this post very short, I just wanted to let you know I was here and able to read your dear comments which is why this post is going to be short, I just want to go and read the comments I haven't seen yet. I know Dave has kept you informed which is so good of him but I haven't had the chance to read his posts or the comments so I will go and do that now and then I will post again very soon with all the news. So very good to be back, much love to you all.

Stormy times

Hi All,

David again. Although it is possible you might get a post from Jen soon as her sister has organised a laptop and internet access for her at hospice, so if she is up to it she will do one herself. However, if not, she will at least be able to easily read your comments so keep them coming.

The stormy times heading is regarding both the periodic pain Jenni has had and the incredible storms we have been having here. Friday night as I took Jen back to hospice she was going into pain again so I stayed with her for a couple of hours and as she had some relief from it around midnight we had a huge storm with lightning, thunder and heavy rain. We both love storms, so I opened her curtain and the door of her room that goes outside and we watched for a while, rapt by the show. I put on a silly little dance in the rain for her for a few seconds which she laughed at but it was a beautiful, wild storm to watch.

Jen has had a mixed week. It started out pretty ordinary but she had 2-3 fairly pain free days wednesday to friday. However, friday night was a bad one for pain for her and she was too exhausted today to come home so Jack and I spent a few hours with her before she needed a sleep. Then Jen's friend Lee had Jack for a few hours so I could relax for a bit. She's a gem.

It has been a mixed week all round really. Jack had a bit of a virus/cold last weekend and we had monday off school and now I think he may have shared with me, so we have to be a little careful about seeing Jenni. Think we were both just a little rundown. Having said that, Jack is still doing really well at school and enjoying it. Jaimie is also doing really well and loving the freedom that having a licence and car bring.

Jenni is going to try to make it to Jack's school concert on thursday night but it's only really a faint possibility. But here's hoping. He's been showing her the song and dance routine his class is going to do and last night we brought down his new check shirt he's going to wear on the night and he looks so grown up all dressed up. I will have to ask Jen how to put pics up here for you as I have taken a few of Jack and Jenni at various times in the past couple of months.

Anyway, off to bed here. We are hoping Jenni has a good night tonight so she and Jack can spend some quality time together tomorrow.

Take care everyone. Am contemplating whether I keep Jenni's blog going afterwards or post a link to one I started to keep those interested in how Jack and Jamie are going in the future. I sort of feel that this one is Jenni's and I should leave it but then it might be easier for people to access this one. Dunno. Your thoughts?

Thanks again for all your wishes and prayers.

David.

The seesaw continues

Hi Everyone,

Just a quick note as I'm heading to bed. Not long back from hospice talking Jenni back after she spent the afternoon here at her home. She had a wonderful time with Jamie and Jack but went into pain as we were about to head back. She has had a tough week with bad pain most evenings/nights and at some other random times apparently. She wanted me to stay with her until it passed and it took nearly three hours and they had to knock her out in the end. Please keep your thoughts, prayers and wishes for pain free time for Jenni coming as she really needs them now. When the pain comes it is just relentless for her.

Added to this is a new emotional pain for us both as it seems that Jack has convinced himself that Mum is going to get better. We will have to go through the "chat" again with him. A tough conversation that one but necessary, especially as time appears to be running out.

Will end it here, am just stuck for words at the moment. Life is just not fair sometimes.

Take care,

David.

A little normality

Hi everyone,

Just a quick note. Jenni has improved quite a bit since the infection was controlled, however there is still just gradual deterioration. She came home Friday evening for dinner and then again on Saturday for the afternoon and evening but went back to hospice in a bit of pain unfortunately. Jenni's sister, Caz, looked after Jack and read to him while I took Jenni back to hospice, which was a help as Jamie was away at his Dad's. It took a little while for them to sort it out before she could sleep and she probably shouldn't have come home again on Sunday as she was exhausted but she likes to be there. Anyway, it was only for a few hours before Jack and I had to come home to Warragul. She seems in slightly better spirits at the moment, which is good.

Some good news! Jack is loving school and life generally. He's growing, making friends, loving swimming lessons and generally growing up. Jamie got his car licence on Friday and after some initial nerves about driving alone, you couldn't have dragged him out of his car on Sunday!

Jenni was going to try to post herself on the weekend while she was home but time and energy just ran out. She says "Hi" to everyone and thanks for the thoughts, wishes and prayers.

Enough for now, better get back to work.

David.