› Forums › General Melanoma Community › Help please
- This topic has 42 replies, 8 voices, and was last updated 13 years, 1 month ago by
Aussiegirl.
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- April 13, 2012 at 2:23 am
My partner and I are in a fairly new relationship. His primary melanoma level 3 was in Feb 2010 with several metastases to the groin, pelvis in 2010 and 2011. Then the devastating news in Nov 2011 (the same week we moved in together) that he had a brain tumor in the left occipital lobe. This was removed in Dec then another one appeared in the same area in March 2012. He’s now undergoing radiation; 3 treatments so far which have scared both of us because of how quickly the symptoms (which he’d convinced himself he wouldn’t have as he was strong and fit) have surfaced.My partner and I are in a fairly new relationship. His primary melanoma level 3 was in Feb 2010 with several metastases to the groin, pelvis in 2010 and 2011. Then the devastating news in Nov 2011 (the same week we moved in together) that he had a brain tumor in the left occipital lobe. This was removed in Dec then another one appeared in the same area in March 2012. He’s now undergoing radiation; 3 treatments so far which have scared both of us because of how quickly the symptoms (which he’d convinced himself he wouldn’t have as he was strong and fit) have surfaced. The usual – nausea fatigue etc. What particularly worries me is his mental health. Our relationship is really suffering. He rotates between wanting me here and doing everything we can as a couple to beat this thing so we can have the future we’ve fought so hard to have. And then telling me to leave, in favour of doing it completely alone. Won’t even let me drive him to radiation or brain ops! I’m at my wits end trying to be supportive…and failing. I love him so much but often feel that perhaps he’s right and I should leave. My presence seems to make him angry and use up what little energy he has. Can anyone please help?
- Replies
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- April 13, 2012 at 3:29 am
oh, sweetheart. What a difficult road. Even though you're getting pushed away, it sounds as though you've been an amazing support. He is lucky to have you.
That's a lot of strain on a new relationship. I've been married for several years, and we are both walking wounded under the pressure of the melanoma diagnosis (at stage 3, with way less than you're having to deal with!)
I wonder if he might be struggling with mental health symptoms secondary to the treatment. Is he having some personality changes from the brain involvement and/or radiation? Maybe he needs treatment for his own depression? Sometimes depressed people can look more angry & withdrawn than sad.
Speaking from the perspective of someone on the other side: I know that I am very frightened about my future. I'm working really hard to stay connected to my children, husband & friends. But sometimes I feel like on another planet from the people I love most. It's like there's a blurry ocean of confusion & possible death & total fear in between me & everyone else in my life. If your partner is feeling like that, it might be hard to have you near. Maybe he's trying to protect you somehow (I think men can be a little dense like that sometimes).
I do think that you need to TAKE CARE OF YOURSELF. You will be of no good to him or your own soul if you allow yourself to be consumed by melanoma (his or anyone's). Believe me: he'll feel even worse if your life is swallowed up by this, too. Do you have people you can talk to? Do you have work or something you can do that fills your own cup?
I hope there's some way that you can keep yourself well. No one deserves to be treated badly — cancer or not!
All the best to you.
-Ursula
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Personal blog: http://theselfsamewell.
blogspot.ca/ -
- April 13, 2012 at 5:33 am
Thank you so much for responding Ursula. Your post was a godsend. I’m starting to realise that I need to start taking care of myself. When I’m also in a bad place I’m even less able to be a good support and find myself crying at very weird places – the dairy aisle or washing up the dishes! My main trouble is someone impartial to talk to. Family dont seem to understand. And friends try but I know they only see the surface difficulties – behaviour, tension etc. I feeling he’s disappearing and we’re both being swamped; neither one of us knowing what to do. We HAVE talked about the future and what it will probably hold. This funnily enough has been the easy part. It’s the day to day slog which hits hard. But I love him and have to believe we’ll get through. -
- April 13, 2012 at 6:43 am
Hi AussieGirl,
I'm also a young (ish! – 32) Australian who is dealing with brain mets at the moment. I have been married for 1 year, and my wife has been amazingly supportive. I'm sure everytone who is dealt brain mets has a large psychological battle also, I know from experience. If you want to talk about anything, drop me an email at [email protected].
Good luck!
Ben.
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- April 13, 2012 at 8:31 am
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. -
- April 13, 2012 at 8:31 am
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. -
- April 13, 2012 at 8:31 am
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. -
- April 13, 2012 at 6:43 am
Hi AussieGirl,
I'm also a young (ish! – 32) Australian who is dealing with brain mets at the moment. I have been married for 1 year, and my wife has been amazingly supportive. I'm sure everytone who is dealt brain mets has a large psychological battle also, I know from experience. If you want to talk about anything, drop me an email at [email protected].
Good luck!
Ben.
-
- April 13, 2012 at 6:43 am
Hi AussieGirl,
I'm also a young (ish! – 32) Australian who is dealing with brain mets at the moment. I have been married for 1 year, and my wife has been amazingly supportive. I'm sure everytone who is dealt brain mets has a large psychological battle also, I know from experience. If you want to talk about anything, drop me an email at [email protected].
Good luck!
Ben.
-
- April 13, 2012 at 5:33 am
Thank you so much for responding Ursula. Your post was a godsend. I’m starting to realise that I need to start taking care of myself. When I’m also in a bad place I’m even less able to be a good support and find myself crying at very weird places – the dairy aisle or washing up the dishes! My main trouble is someone impartial to talk to. Family dont seem to understand. And friends try but I know they only see the surface difficulties – behaviour, tension etc. I feeling he’s disappearing and we’re both being swamped; neither one of us knowing what to do. We HAVE talked about the future and what it will probably hold. This funnily enough has been the easy part. It’s the day to day slog which hits hard. But I love him and have to believe we’ll get through. -
- April 13, 2012 at 5:33 am
Thank you so much for responding Ursula. Your post was a godsend. I’m starting to realise that I need to start taking care of myself. When I’m also in a bad place I’m even less able to be a good support and find myself crying at very weird places – the dairy aisle or washing up the dishes! My main trouble is someone impartial to talk to. Family dont seem to understand. And friends try but I know they only see the surface difficulties – behaviour, tension etc. I feeling he’s disappearing and we’re both being swamped; neither one of us knowing what to do. We HAVE talked about the future and what it will probably hold. This funnily enough has been the easy part. It’s the day to day slog which hits hard. But I love him and have to believe we’ll get through.
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- April 13, 2012 at 3:29 am
oh, sweetheart. What a difficult road. Even though you're getting pushed away, it sounds as though you've been an amazing support. He is lucky to have you.
That's a lot of strain on a new relationship. I've been married for several years, and we are both walking wounded under the pressure of the melanoma diagnosis (at stage 3, with way less than you're having to deal with!)
I wonder if he might be struggling with mental health symptoms secondary to the treatment. Is he having some personality changes from the brain involvement and/or radiation? Maybe he needs treatment for his own depression? Sometimes depressed people can look more angry & withdrawn than sad.
Speaking from the perspective of someone on the other side: I know that I am very frightened about my future. I'm working really hard to stay connected to my children, husband & friends. But sometimes I feel like on another planet from the people I love most. It's like there's a blurry ocean of confusion & possible death & total fear in between me & everyone else in my life. If your partner is feeling like that, it might be hard to have you near. Maybe he's trying to protect you somehow (I think men can be a little dense like that sometimes).
I do think that you need to TAKE CARE OF YOURSELF. You will be of no good to him or your own soul if you allow yourself to be consumed by melanoma (his or anyone's). Believe me: he'll feel even worse if your life is swallowed up by this, too. Do you have people you can talk to? Do you have work or something you can do that fills your own cup?
I hope there's some way that you can keep yourself well. No one deserves to be treated badly — cancer or not!
All the best to you.
-Ursula
——————————
Personal blog: http://theselfsamewell.
blogspot.ca/ -
- April 13, 2012 at 3:29 am
oh, sweetheart. What a difficult road. Even though you're getting pushed away, it sounds as though you've been an amazing support. He is lucky to have you.
That's a lot of strain on a new relationship. I've been married for several years, and we are both walking wounded under the pressure of the melanoma diagnosis (at stage 3, with way less than you're having to deal with!)
I wonder if he might be struggling with mental health symptoms secondary to the treatment. Is he having some personality changes from the brain involvement and/or radiation? Maybe he needs treatment for his own depression? Sometimes depressed people can look more angry & withdrawn than sad.
Speaking from the perspective of someone on the other side: I know that I am very frightened about my future. I'm working really hard to stay connected to my children, husband & friends. But sometimes I feel like on another planet from the people I love most. It's like there's a blurry ocean of confusion & possible death & total fear in between me & everyone else in my life. If your partner is feeling like that, it might be hard to have you near. Maybe he's trying to protect you somehow (I think men can be a little dense like that sometimes).
I do think that you need to TAKE CARE OF YOURSELF. You will be of no good to him or your own soul if you allow yourself to be consumed by melanoma (his or anyone's). Believe me: he'll feel even worse if your life is swallowed up by this, too. Do you have people you can talk to? Do you have work or something you can do that fills your own cup?
I hope there's some way that you can keep yourself well. No one deserves to be treated badly — cancer or not!
All the best to you.
-Ursula
——————————
Personal blog: http://theselfsamewell.
blogspot.ca/ -
- April 13, 2012 at 4:43 am
If you truly love him, I hope you will hang in there. His pushing you away may be a "test", a fear of hurting you, or as someone else said, a symptom of the disease itself. Melanoma / Cancer is a tough road – a roller coaster to say the least, but when you truly love someone, try to see beyond the trivial and just love him. I pray for strength for you and healing for him. God Bless and Hang Tough.
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- April 13, 2012 at 8:25 am
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…? -
- April 13, 2012 at 8:25 am
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…? -
- April 13, 2012 at 8:25 am
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…?
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- April 13, 2012 at 4:43 am
If you truly love him, I hope you will hang in there. His pushing you away may be a "test", a fear of hurting you, or as someone else said, a symptom of the disease itself. Melanoma / Cancer is a tough road – a roller coaster to say the least, but when you truly love someone, try to see beyond the trivial and just love him. I pray for strength for you and healing for him. God Bless and Hang Tough.
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- April 13, 2012 at 4:43 am
If you truly love him, I hope you will hang in there. His pushing you away may be a "test", a fear of hurting you, or as someone else said, a symptom of the disease itself. Melanoma / Cancer is a tough road – a roller coaster to say the least, but when you truly love someone, try to see beyond the trivial and just love him. I pray for strength for you and healing for him. God Bless and Hang Tough.
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- April 13, 2012 at 10:31 am
I am also fighting this disease Have my sweetheart as my co-pilot in this battle.Without her it would be much more difficult to live as normal as possible.She is there just to hear my anger I sometimes let out when things go wrong.Not very often.She is also there to share the good news.A real blessing.Stay with him even though he makes it really difficult.No matter what ever happens know you always did your best .No guilt.My prayers go out to both of you.Hang in there. Al
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- April 20, 2012 at 3:45 am
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!
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- April 20, 2012 at 3:45 am
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!
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- April 20, 2012 at 3:45 am
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!
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- April 13, 2012 at 10:31 am
I am also fighting this disease Have my sweetheart as my co-pilot in this battle.Without her it would be much more difficult to live as normal as possible.She is there just to hear my anger I sometimes let out when things go wrong.Not very often.She is also there to share the good news.A real blessing.Stay with him even though he makes it really difficult.No matter what ever happens know you always did your best .No guilt.My prayers go out to both of you.Hang in there. Al
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- April 13, 2012 at 10:31 am
I am also fighting this disease Have my sweetheart as my co-pilot in this battle.Without her it would be much more difficult to live as normal as possible.She is there just to hear my anger I sometimes let out when things go wrong.Not very often.She is also there to share the good news.A real blessing.Stay with him even though he makes it really difficult.No matter what ever happens know you always did your best .No guilt.My prayers go out to both of you.Hang in there. Al
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- April 13, 2012 at 12:21 pm
Unfortunately, late stage melanoma challenges patients and the people closest to them in a number of ways. Fear, chronic anxiety, and uncertainty about the future are some problems that are usually encountered. Of course, there are the side effects of treatment and/or medication that one needs to consider.
Therefore, it is very understandable that your partner appears to be experiencing mental health issues. Perhaps it would be an idea to consult his doctor (oncologist or general practitioner) for advice?
Hope this helps
Frank from Australia
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- April 13, 2012 at 12:21 pm
Unfortunately, late stage melanoma challenges patients and the people closest to them in a number of ways. Fear, chronic anxiety, and uncertainty about the future are some problems that are usually encountered. Of course, there are the side effects of treatment and/or medication that one needs to consider.
Therefore, it is very understandable that your partner appears to be experiencing mental health issues. Perhaps it would be an idea to consult his doctor (oncologist or general practitioner) for advice?
Hope this helps
Frank from Australia
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- April 13, 2012 at 12:21 pm
Unfortunately, late stage melanoma challenges patients and the people closest to them in a number of ways. Fear, chronic anxiety, and uncertainty about the future are some problems that are usually encountered. Of course, there are the side effects of treatment and/or medication that one needs to consider.
Therefore, it is very understandable that your partner appears to be experiencing mental health issues. Perhaps it would be an idea to consult his doctor (oncologist or general practitioner) for advice?
Hope this helps
Frank from Australia
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- April 13, 2012 at 6:34 pm
Honey….
i am soooo sorry to hear this sad news… i can only imagine what the two of you are going through right now…
i am an intuative… do not normally post..
I feel strongly that it is time for you to take a deep breath… your partner is an emotional rollercoaster right now..
i feel he is desperately trying to find even ground where there is none under him right now. he wants to protect you
he wants you to stay with him.. he wants you to go… he is not stable right now.. he is trying to already let go of
what he fears he is losing.. his life…
you must be strong.. somehow distance yourself from his words.. they are only words.. of course he does not want you
to go… he wants escape.. which is not possible… sigh…
i have posted this before.. and will post again…
in my hours of reasearch… i came across something that i have a very strong feeling about…
don't know how you feel about alternative healing.. the power in the body to heal..???
but.. this is the first place i would go if told i had cancer…
http://www.ncrf.org… please take the time to check it out…make your own decisions… its very interesting to say the least..
the website is a bit outdated..this is because they are understaffed.. and more interested in helping people than of keeping the website current.. they also have a FaceBook page that is very interesting..
the story of Fred Eichorn… who had pancreatic cancer 20+ yrs ago and since that time has his degree as a transplant Dr as well as a bio-chemist…. and how he did it.. and what he has developed that has cured many of cancer as well as other diseases..
i have personally been in contact with a couple of people who's brain tumors have litereally disappeared in a matter of a few weeks… my tuned in parts tell me this is a miracle…
take care.. and good luck
M
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- April 16, 2012 at 4:42 am
Hello Aussie Girl,
I'm Brisbane, Australia and thought that i'd just mention a few places that you can contact here for support.
Melanoma Patients Australia have a peer support hotline 1300 88 44 00 website, facebook page and support meetings and also Cancer Council has a Helpline 131120. Even though the love and support you get from the people here on MRF are second to none actually talking to someone on the phone or in person may work wonders as you can have indepth conversation and really vent… Everyone needs too every now and then. My email is [email protected] if you would like further contact. Susan-OM
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- April 17, 2012 at 4:19 am
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? -
- April 17, 2012 at 4:19 am
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? -
- April 17, 2012 at 4:50 am
Hi again,
Glaf to hear you have sorted out some og your relationship issues and he is feeling more confident. As I understand it, there is only one gamma knife faciity in Australia, asocciated with Macquarie University here in Sydney. There are however other stereotactic surgery facilities that use a "linear accelerator" machine, with similar results to that of the gamma knife. Slightly different approach, very similar function.
Hope this helps,
Ben.
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- April 17, 2012 at 4:50 am
Hi again,
Glaf to hear you have sorted out some og your relationship issues and he is feeling more confident. As I understand it, there is only one gamma knife faciity in Australia, asocciated with Macquarie University here in Sydney. There are however other stereotactic surgery facilities that use a "linear accelerator" machine, with similar results to that of the gamma knife. Slightly different approach, very similar function.
Hope this helps,
Ben.
-
- April 17, 2012 at 4:50 am
Hi again,
Glaf to hear you have sorted out some og your relationship issues and he is feeling more confident. As I understand it, there is only one gamma knife faciity in Australia, asocciated with Macquarie University here in Sydney. There are however other stereotactic surgery facilities that use a "linear accelerator" machine, with similar results to that of the gamma knife. Slightly different approach, very similar function.
Hope this helps,
Ben.
-
- April 20, 2012 at 3:31 am
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?
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- April 20, 2012 at 3:31 am
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?
-
- April 20, 2012 at 3:31 am
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?
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- April 17, 2012 at 4:19 am
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? -
- April 16, 2012 at 4:42 am
Hello Aussie Girl,
I'm Brisbane, Australia and thought that i'd just mention a few places that you can contact here for support.
Melanoma Patients Australia have a peer support hotline 1300 88 44 00 website, facebook page and support meetings and also Cancer Council has a Helpline 131120. Even though the love and support you get from the people here on MRF are second to none actually talking to someone on the phone or in person may work wonders as you can have indepth conversation and really vent… Everyone needs too every now and then. My email is [email protected] if you would like further contact. Susan-OM
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- April 16, 2012 at 4:42 am
Hello Aussie Girl,
I'm Brisbane, Australia and thought that i'd just mention a few places that you can contact here for support.
Melanoma Patients Australia have a peer support hotline 1300 88 44 00 website, facebook page and support meetings and also Cancer Council has a Helpline 131120. Even though the love and support you get from the people here on MRF are second to none actually talking to someone on the phone or in person may work wonders as you can have indepth conversation and really vent… Everyone needs too every now and then. My email is [email protected] if you would like further contact. Susan-OM
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- April 13, 2012 at 6:34 pm
Honey….
i am soooo sorry to hear this sad news… i can only imagine what the two of you are going through right now…
i am an intuative… do not normally post..
I feel strongly that it is time for you to take a deep breath… your partner is an emotional rollercoaster right now..
i feel he is desperately trying to find even ground where there is none under him right now. he wants to protect you
he wants you to stay with him.. he wants you to go… he is not stable right now.. he is trying to already let go of
what he fears he is losing.. his life…
you must be strong.. somehow distance yourself from his words.. they are only words.. of course he does not want you
to go… he wants escape.. which is not possible… sigh…
i have posted this before.. and will post again…
in my hours of reasearch… i came across something that i have a very strong feeling about…
don't know how you feel about alternative healing.. the power in the body to heal..???
but.. this is the first place i would go if told i had cancer…
http://www.ncrf.org… please take the time to check it out…make your own decisions… its very interesting to say the least..
the website is a bit outdated..this is because they are understaffed.. and more interested in helping people than of keeping the website current.. they also have a FaceBook page that is very interesting..
the story of Fred Eichorn… who had pancreatic cancer 20+ yrs ago and since that time has his degree as a transplant Dr as well as a bio-chemist…. and how he did it.. and what he has developed that has cured many of cancer as well as other diseases..
i have personally been in contact with a couple of people who's brain tumors have litereally disappeared in a matter of a few weeks… my tuned in parts tell me this is a miracle…
take care.. and good luck
M
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- April 13, 2012 at 6:34 pm
Honey….
i am soooo sorry to hear this sad news… i can only imagine what the two of you are going through right now…
i am an intuative… do not normally post..
I feel strongly that it is time for you to take a deep breath… your partner is an emotional rollercoaster right now..
i feel he is desperately trying to find even ground where there is none under him right now. he wants to protect you
he wants you to stay with him.. he wants you to go… he is not stable right now.. he is trying to already let go of
what he fears he is losing.. his life…
you must be strong.. somehow distance yourself from his words.. they are only words.. of course he does not want you
to go… he wants escape.. which is not possible… sigh…
i have posted this before.. and will post again…
in my hours of reasearch… i came across something that i have a very strong feeling about…
don't know how you feel about alternative healing.. the power in the body to heal..???
but.. this is the first place i would go if told i had cancer…
http://www.ncrf.org… please take the time to check it out…make your own decisions… its very interesting to say the least..
the website is a bit outdated..this is because they are understaffed.. and more interested in helping people than of keeping the website current.. they also have a FaceBook page that is very interesting..
the story of Fred Eichorn… who had pancreatic cancer 20+ yrs ago and since that time has his degree as a transplant Dr as well as a bio-chemist…. and how he did it.. and what he has developed that has cured many of cancer as well as other diseases..
i have personally been in contact with a couple of people who's brain tumors have litereally disappeared in a matter of a few weeks… my tuned in parts tell me this is a miracle…
take care.. and good luck
M
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