Aussiegirl

Thanks Al. Co-pilot is a lovely term and very apt for what we're all going through. We are hanging in there. In fact we're doing much more than that. What a difference a week makes! Last week felt like we were stumbling around in the dark, very scared, angry and at war with the world. Yet this week, with radiation symptoms being managed better, things are looking brighter and we are both much more confident in our own selves, and definitely more in tune with each other. Most of the time he is so strong, trying all he can to set everything up so we are taken care of if the "worst happens". I've seen too many couples neglect discussing the topic of death, in favour of focusing only on surviving. While I can understand this, I think it's far better to acknowledge the worst (as a possibility) and still hope for the best. That's what we are trying to do – although some days are better than others. My problem is I can't imagine life without him. It's that fear which strikes most in the middle of the night and it's overwhelming. All the very best to you and your sweetheart. You sound like a very lucky man!

Thanks Al. Co-pilot is a lovely term and very apt for what we're all going through. We are hanging in there. In fact we're doing much more than that. What a difference a week makes! Last week felt like we were stumbling around in the dark, very scared, angry and at war with the world. Yet this week, with radiation symptoms being managed better, things are looking brighter and we are both much more confident in our own selves, and definitely more in tune with each other. Most of the time he is so strong, trying all he can to set everything up so we are taken care of if the "worst happens". I've seen too many couples neglect discussing the topic of death, in favour of focusing only on surviving. While I can understand this, I think it's far better to acknowledge the worst (as a possibility) and still hope for the best. That's what we are trying to do – although some days are better than others. My problem is I can't imagine life without him. It's that fear which strikes most in the middle of the night and it's overwhelming. All the very best to you and your sweetheart. You sound like a very lucky man!

Thanks Al. Co-pilot is a lovely term and very apt for what we're all going through. We are hanging in there. In fact we're doing much more than that. What a difference a week makes! Last week felt like we were stumbling around in the dark, very scared, angry and at war with the world. Yet this week, with radiation symptoms being managed better, things are looking brighter and we are both much more confident in our own selves, and definitely more in tune with each other. Most of the time he is so strong, trying all he can to set everything up so we are taken care of if the "worst happens". I've seen too many couples neglect discussing the topic of death, in favour of focusing only on surviving. While I can understand this, I think it's far better to acknowledge the worst (as a possibility) and still hope for the best. That's what we are trying to do – although some days are better than others. My problem is I can't imagine life without him. It's that fear which strikes most in the middle of the night and it's overwhelming. All the very best to you and your sweetheart. You sound like a very lucky man!

Hi again Ben,

Thanks for the tip! We've been in contact with Macquarie University Hospital and will be sending scan copies to them for their advice. This is a free service! Amazing. Only 2 more rounds of radiation to go. The Maccylin (?) has made a huge difference to the nausea – don't know why they didn't suggest this at the outset but just very pleased this part is now being managed. My partner's radiologist has now also said that they are rethinking the targeted radiation. This was a surprise to us as it made sense to zap the area as fully as possible. Will ask more about the reasons for this when we meet with him next week. 

A radiologist friend commented last night that the dose being received is quite low. In his words: "It's palliative. Not therapeutic." This is worrying me, as we both assumed that the radiation was to eradicate the chance of further tumors, not a stop gap measure. It never occurred to us to ask what dose he would receive. Just assumed that it would be at a level to have maximum impact. Another question to ask next week! 

On the up side, a visit to the hospital social worker proved to be very helpful. This is, I feel, a big step forward in the sense of managing some issues around our children. We both feel they need to be kept informed but not overwhelmed by 'what if's'. We truly hope to beat this, but also need to know that, whatever happens, things have been put in place to ensure the safety and stability of our kids. Just of like an insurance policy, which we hope we'll never have to use. 🙂

How are you going?

Hi again Ben,

Thanks for the tip! We've been in contact with Macquarie University Hospital and will be sending scan copies to them for their advice. This is a free service! Amazing. Only 2 more rounds of radiation to go. The Maccylin (?) has made a huge difference to the nausea – don't know why they didn't suggest this at the outset but just very pleased this part is now being managed. My partner's radiologist has now also said that they are rethinking the targeted radiation. This was a surprise to us as it made sense to zap the area as fully as possible. Will ask more about the reasons for this when we meet with him next week. 

A radiologist friend commented last night that the dose being received is quite low. In his words: "It's palliative. Not therapeutic." This is worrying me, as we both assumed that the radiation was to eradicate the chance of further tumors, not a stop gap measure. It never occurred to us to ask what dose he would receive. Just assumed that it would be at a level to have maximum impact. Another question to ask next week! 

On the up side, a visit to the hospital social worker proved to be very helpful. This is, I feel, a big step forward in the sense of managing some issues around our children. We both feel they need to be kept informed but not overwhelmed by 'what if's'. We truly hope to beat this, but also need to know that, whatever happens, things have been put in place to ensure the safety and stability of our kids. Just of like an insurance policy, which we hope we'll never have to use. 🙂

How are you going?

Hi again Ben,

Thanks for the tip! We've been in contact with Macquarie University Hospital and will be sending scan copies to them for their advice. This is a free service! Amazing. Only 2 more rounds of radiation to go. The Maccylin (?) has made a huge difference to the nausea – don't know why they didn't suggest this at the outset but just very pleased this part is now being managed. My partner's radiologist has now also said that they are rethinking the targeted radiation. This was a surprise to us as it made sense to zap the area as fully as possible. Will ask more about the reasons for this when we meet with him next week. 

A radiologist friend commented last night that the dose being received is quite low. In his words: "It's palliative. Not therapeutic." This is worrying me, as we both assumed that the radiation was to eradicate the chance of further tumors, not a stop gap measure. It never occurred to us to ask what dose he would receive. Just assumed that it would be at a level to have maximum impact. Another question to ask next week! 

On the up side, a visit to the hospital social worker proved to be very helpful. This is, I feel, a big step forward in the sense of managing some issues around our children. We both feel they need to be kept informed but not overwhelmed by 'what if's'. We truly hope to beat this, but also need to know that, whatever happens, things have been put in place to ensure the safety and stability of our kids. Just of like an insurance policy, which we hope we'll never have to use. 🙂

How are you going?

Thank you to everyone for taking the time to respond. Things are looking better and we are both feeling a bit more secure. This is a roller coaster ride alright! Sometimes you have to fall apart in order to regroup and get back on again… I guess that’s what we are doing. Together. WB Radiation finishes in one more week. Unfortunately his doctors are now rethinking whether to do the targeted radiation. Unsure why at this stage but plan to seek clarification at the next follow up meeting. We are attempting to get sime more info on gamma knife which, it aooears, is only available at one centre in Australia. Symptoms persist but they are manageable (easy to say when it’s not me throwing up or too tired to think straight!!) but things could be worse. He remains physically strong and much more positive than previously. Together we have 4 children aged 11, 8, 7 and 4. While we’ve tried to be open and honest with them about what’s going on we also don’t want to overwhelm them with too much info. Has anyone gone through this and do you have light you could shed on what worked for you?

Thank you to everyone for taking the time to respond. Things are looking better and we are both feeling a bit more secure. This is a roller coaster ride alright! Sometimes you have to fall apart in order to regroup and get back on again… I guess that’s what we are doing. Together. WB Radiation finishes in one more week. Unfortunately his doctors are now rethinking whether to do the targeted radiation. Unsure why at this stage but plan to seek clarification at the next follow up meeting. We are attempting to get sime more info on gamma knife which, it aooears, is only available at one centre in Australia. Symptoms persist but they are manageable (easy to say when it’s not me throwing up or too tired to think straight!!) but things could be worse. He remains physically strong and much more positive than previously. Together we have 4 children aged 11, 8, 7 and 4. While we’ve tried to be open and honest with them about what’s going on we also don’t want to overwhelm them with too much info. Has anyone gone through this and do you have light you could shed on what worked for you?

Thank you to everyone for taking the time to respond. Things are looking better and we are both feeling a bit more secure. This is a roller coaster ride alright! Sometimes you have to fall apart in order to regroup and get back on again… I guess that’s what we are doing. Together. WB Radiation finishes in one more week. Unfortunately his doctors are now rethinking whether to do the targeted radiation. Unsure why at this stage but plan to seek clarification at the next follow up meeting. We are attempting to get sime more info on gamma knife which, it aooears, is only available at one centre in Australia. Symptoms persist but they are manageable (easy to say when it’s not me throwing up or too tired to think straight!!) but things could be worse. He remains physically strong and much more positive than previously. Together we have 4 children aged 11, 8, 7 and 4. While we’ve tried to be open and honest with them about what’s going on we also don’t want to overwhelm them with too much info. Has anyone gone through this and do you have light you could shed on what worked for you?

Thanks for your message Ben. Contact with someone in my partner’s position is wonderful. Could I ask when your tumor was diagnosed and what your treatment has been? What goes through your mind? Do your fears involve wanting to go through this alone at all? What does your wife do that perhaps I haven’t? I seen to be failing all over the place when all I want to do is help… Nothing seems to be working for us. Thanks so much.

Thanks for your message Ben. Contact with someone in my partner’s position is wonderful. Could I ask when your tumor was diagnosed and what your treatment has been? What goes through your mind? Do your fears involve wanting to go through this alone at all? What does your wife do that perhaps I haven’t? I seen to be failing all over the place when all I want to do is help… Nothing seems to be working for us. Thanks so much.

Thanks for your message Ben. Contact with someone in my partner’s position is wonderful. Could I ask when your tumor was diagnosed and what your treatment has been? What goes through your mind? Do your fears involve wanting to go through this alone at all? What does your wife do that perhaps I haven’t? I seen to be failing all over the place when all I want to do is help… Nothing seems to be working for us. Thanks so much.

Thanks Kristine. Yes I am hanging in there! I couldn’t and wouldn’t be anywhere else. It’s convincing him of that that’s the difficult part. I’m sure it’s part fear, a desire to protect me from what’s to come and also to protect himself from hurt and pain too. There’s just so much fear to overcome. It seems impossible sometimes. We talked this afternoon (it’s Friday 13th here!) and although we both realise there’s no simple answer to our situation (if only!) we have agreed to stay together and see where the journey takes us. Thanks for your prayers. I haven’t prayed for a long time. Perhaps now is the time to start again…?

Thanks Kristine. Yes I am hanging in there! I couldn’t and wouldn’t be anywhere else. It’s convincing him of that that’s the difficult part. I’m sure it’s part fear, a desire to protect me from what’s to come and also to protect himself from hurt and pain too. There’s just so much fear to overcome. It seems impossible sometimes. We talked this afternoon (it’s Friday 13th here!) and although we both realise there’s no simple answer to our situation (if only!) we have agreed to stay together and see where the journey takes us. Thanks for your prayers. I haven’t prayed for a long time. Perhaps now is the time to start again…?

Thanks Kristine. Yes I am hanging in there! I couldn’t and wouldn’t be anywhere else. It’s convincing him of that that’s the difficult part. I’m sure it’s part fear, a desire to protect me from what’s to come and also to protect himself from hurt and pain too. There’s just so much fear to overcome. It seems impossible sometimes. We talked this afternoon (it’s Friday 13th here!) and although we both realise there’s no simple answer to our situation (if only!) we have agreed to stay together and see where the journey takes us. Thanks for your prayers. I haven’t prayed for a long time. Perhaps now is the time to start again…?