About Melanie

Melanie

Steph, I have no advice sorry- my husband has a BT in the same place & whilst I understand some of what you are going through- every day I thank god it wasn't my child. I hope you get some answers for him and I hope he feels better soon. I'm around if you want to chat some more- it can be very lonely dealing with this awful disease Mel

Melanie

Hi My husband has stage 3 astrocytoma which is similar to yours. He has one large mass, in the centre of the thalamus going into the brain stem so also cannot be operated on. He has completed radiation (6 weeks) with no success, and cannot do anymore. And has just finished his 3rd round of temodal like yourself. We have a scan in 8 days to see if there has been any change. How are you feeling? Mel

Melanie

Oh gosh I hear you!! When doctors appointments & handfuls of drugs become normal- everyday activities. But then it's evident it's not normal when you describe a small part of your day to someone else & they stare in disbelief. I have a motto- keep smiling, it confuses the cancer 😉

Melanie

Jo Beth, you are such an amazing woman. Can you take stress leave from work, try & cherish some time together? I understand completely where you are coming from, intimacy walked out our door a couple of months ago. Dex is a bastard, it's a saviour but a cruel & nasty drug. Allow yourself to cry xx

Melanie

Yesterday was a bit of a blow I have hurt my knee, and am trying to rest as much as possible as I have to put down mulch next week before our house goes on the market. My mum took my eldest for the night, & Ben kindly offer to watch our youngest in the bath whilst I took 10 mins to lay down. Ben dried her & bought her into our room (which was a little unusual) he placed her on the bed, and went to his wardrobe. Without placing much thought, I laughed & said "ah hun, I don't think you'll find anything small enough in there for her" He turned, looked at me for a minute confused, & laughed- asked me to watch her whilst he went to her room to get her pj's. He came back with her bathers & proceeded to put them on her. Reality hit I quickly brushed it off, and went & got her pj's. He didn't seem to notice the 2 large issues staring us both in the face. I on the other hand, have thought about it since. I know weaning off dex makes them feel like crap, and do weird things cause their head is all foggy. But this.... well this was a little bit of an insight into what future looks like for us. And it's a bit fricken scary He had a good day today, mentioned before heading to bed every day off the dex is feeling better, so that is an amazing positive. I had the day at my parents today, so my knee is feeling much better. So gardening begins on Tuesday I think! I love him more every day, even when I get angry & frustrated with him. I didn't think it would be possible. T minus 8 days until scan day. He has told me no more chemo if there is growth. I can see his reasonings, it's hard to accept, but I understand & support him. Praying for no growth, or shrinkage! I hope all are feeling well tonight!

Melanie

Oh Jenny :( I can't believe that you & your children have to face all of this not only once but twice We are absolutely blessed with time, videos and photos are something that I place a high value on now. I can't imagine how frustrating it must be to have to face the loss of your loved one again. My Ben is fighting strong, and I hope your husband does too. Keep in touch- pm me if you need to talk

Melanie

Thanks Scott, he is doing as well as can be! We have a scan in the next 2 weeks - just have to try not to hold our breath until we get the results :) You won't fathom what it means logistically but you can do it- it will smash you in the face- hard & fast. The key- be prepared! Now is the time to make extra meals at dinner time & freeze them. Start doing little things now like cooking biscuits that you can freeze, muffins etc all easy things that work well for school lunches that you can pull out the night before or even that morning for their lunches. Also have a range of food for your wife, jelly, custard, crackers are a staple in our house- so that if dinner makes her feel nauseated she will have options. The key with chemo is to keep them healthy, so if she feels hungry at 1am not 8pm tell her to eat at 1am. If you get malnourished - chemo stops. Get your support team in place, arrange with family to help out, make it routine. If you have no family help, try to arrange a baby sitter that you can create with the kids a relationship. You will need a break, and they will need attention from someone who is completely focused on them. Make sure your school/ kids teachers know the situation, know chemo weeks etc- they will help too if the kids are emotional or just need to chat. Don't do more than you have to do, don't volunteer for anything. Some weeks will look awesome, then the next you will feel like your drowning!!! Like my washing this week- arghhhhhh...... it is an avalanche and I seriously can't seem to get ahead with it! Kids are resilient, they handle it better than me 🙂 Last of all- come in here to vent 🙂 Blog away :) My 1 year old doesn't want to sleep tonight- I would really like her to give in- stubborn little bugger! Hug your wife, say I love you all the time, get family photos done, get your financial affairs into place (wills, enduring power of attorney etc) and like the previous poster said- sit down, buckle up, and try to enjoy this roller coaster. Mel

Melanie

Oh Tammy 😞 so sorry to hear that. May he rest in peace. Great big hugs to you.

Melanie

Thank you for this post- it has been helpful- even though my children are only 1 & 4 Scott- I am so sorry to hear your wife's diagnosis. You have a rough road ahead, pull your family support close, and allow help (even if you are stubborn) My husband is 35 with brain cancer (I am 31) It's shit- we are so young, and our fricken kids are so young- and yet we have to go through this SHIT! This unimaginable nightmare! Expect some of your friends to fall away, they struggle to understand how hard this journey is. And thats ok, everyone copes the best way they can. Spend lots of quality time with your kids, esp. one on one time. Expect that sometimes, you will lose your temper- be quick to address it & tell your children that you still love them & you are sorry for losing your temper. (Some days just feel so frustrating!!) And most of all, take time to relax with your wife, maybe a nice quiet dinner. Anyway- feel free to message me if you ever need to chat- or just rant away.

Melanie

So, the third round of chemo has been completed. His next scan is in less than 2 weeks. I feel sick just thinking about it. His tremor his increased to his leg, so now his whole left side tremors. He has weaned off the dex again- this is the first week on zero tablets, to be smashed with the worlds largest headache which has sent his straight back to bed. Better to sleep through it, than to suffer through it! We finally received our insurance money, which is a blessing, we have purchased a more suitable home for him & us. He will have his own area with his own kitchen- for him to watch tv, eat and sleep whenever he wants without disturbing the kids, and without us disturbing him. I still can't begin to understand how 2 children under the age of 4 must sound to someone with a constant thumping headache (amongst other things) So begins my new life, one were I am pretty much a single mum- packing, moving, cleaning, gardening etc Reality- When you purchase your second home ever, your family home, with the only person you have ever loved And the contract states "sole owner" sole owner- thats me- just me. Every day, I wake to hope it's just a nightmare. Every day I'm told by well meaning loved ones - you'll get your miracle, you look back on this together in 20 years and marvel how you ever got through it. And every day, it gets harder to believe that. But tomorrow is a new day And with a new day brings new hope

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