I feel like I have been knocked about so much lately, each time I manage to get back on my feet, another blow comes to get me off balance or knock me down. Hubby has had a head ct scan this afternoon and they have found a tumour on the right frontal lobe. There is a lot of swelling so he has been admitted to hospital and I need to be back at the hospital by 8am tomorrow morning to catch the oncologist on his ward rounds and find out what happens next. Am feeling very scared right now. Jill.
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Frequent Contributor
Jill, My thoughts are with you and your family.
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Oh Jill, I'm sorry to hear about hubby. It just keeps coming, doesn't it? Our thoughts are with you and your family and please, please take care of yourself and the kids. Hopefully touch base with you soon. Jo xxx
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Hi Jill My thoughts and prayers are with you and your family. Don't forget to look after yourself too right now. Take care and stay strong. Someone once said to me 'we are only given what we can deal with' You are a very strong person - you have already proved that. Willow xo
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Thanks ladies, News isn't good. The tumour is a secondary on the brain which apparently is worse than a primary brain tumour. It is 4 1/2 cm in size. The oncologist has told us today that they don't grade or 'name' secondary tumours. He has said that it is uncontrollable. He is offering us radiation or surgery. From what I understand (and I am not clear on it all) either option is only to try and minimize the negative symptoms, quality of life rather than extension. We are leaning towards radiation but don't know all the side effects or collateral damage possible. Greg doesn't seem to comprehend much of what is being said. He has moments when he appears more 'lucid' but much of the time he is very vague. I am told that this is most likely due to the swelling. He is on steroids/anti-inflammatory meds to try and reduce the swelling. At this stage the oncologist is suggesting 2-3 months. How do I prepare our sons that they are losing their Dad?
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Hi Jill, I am so sorry and sad to hear of your husbands new diagnosis. I was diagnosed with a brain tumour in July, so I had surgery and radiotherapy, and they both have their difficulties, but with support and inner strength which you clearly possess, you will be able to get through anything :-). Recovering from surgery was a long process, but with some panadol and a good book to stave off bordem, very achievable. Radiotherapy was also quite easy going, the main side effect was fatigue. I found that I would usually have a nap during the day and that kept me going. Your husband is so lucky to have you supporting and caring for him. You and your children's support and love are his biggest asset. I wish you all the best of luck. Please dont give up hope, the human body has such a strong capacity to heal itself, for as so long as you believe in it. He needs to believe he will heal. Also, I suggest giving meditation a go. It will help with the anxiety and allow you to clear your head, because sometimes it does become too much and you will get overwhelmed. Research a man named Ian Gawler. He is truly inspiring and has a lot to say about the human bodies ability to heal under the right circumstances. Im reading a book by him called 'You can conquer cancer' which Ive found invaluble. My thoughts and prayers are with you and your family, and I hope that things get easier and you get some good news, with love, Christine xox
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Oh God Jill! What horrible news for you and your family. Cancer really sucks and that is putting it very very mildly. It's so F#$*ing unfair!!! I wish there was more that we could do to help you - please use us as a dumping ground, a sounding board or a "shoulder" to cry on anytime you need us. If there is anyway that you think we may be able to help then please yell and yell loud. Take care of you and your beautiful children. Thinking of you Love and hugs Sharon xxxxx
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Hi Mrs Elton I know exactly how you feel. My husband too has a brain tumour. We have had our tumours for 5 years. It is a primary grade 3/boardering on 4 in the temporal left. It is scary shit luv. With our first duck egg size tumour my husband had fatigue and forgetfullness which we put down to too much work. We were 43 at the time. Off to the hospital for our first removal.(we are up to three now.) Then radiation, then chemo. We have just finished our third lot of chemo and are starting on our fourth. Yeha!! I would love to have a chat and see if we could give each other some strength because some days you just don't think you can cope. But because it is someone that you love you just do, i don't know how but you do. I never talk to my husband about death because I can't cope with the thought. Its selfish but I can't do it. But we haven't reached that stage yet. It affects every aspect of your life and I have now come to realize that it will never be the same every again. But I can deal with that part. I do however believe that inner strength from the cancer sufferer is a huge isssue and I admire that greatly because I don't know if I could be strong and positive. My husband is of Irish decent and when we first were diagnosed his thoughts were oh that goodness I haven't got alziehmers I will have that fixed, which seems to keep his sprits up greatly even when he hasn't enough strength to walk from the lounge to the kitchen. My thoughts are with you and your children and I hope that there is a silver lining in your life soon. Any time you feel like venting your anger (cancer is a thousand and one emotions) regards kaz3161
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Hi Jill My thoughts are with you all at this time also. I wish there was more that i could do. Julie
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Hi Julie, Thanks, there is something you may be able to help me with, we will be seeing Nigel in F Block at Charlies tomorrow morning. I don't know if he was your radiation 'man'. Greg hasn't had radiation previously and whilst I have been 'reading' up on it, am wondering if you can run me through the procedure from a 'real person's' point of view. Our medical oncologist has suggested that Greg is likely to have 5 or maybe 10 daily sessions of 15-20 mins treatment. Obviously Nigel may have something else in mind and we will know more tomorrow, but just thought having your input may 'fill in some gaps' for me. Thanks, Jill
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Nooo! Feel like a little kid in a tantrum!!! Wish this wasnt happening to you 😞 Always here if you need me, wish I could do more. Alana
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Hi again, radiation therapy for the brain is an interesting process, the first thing they did when I started was to make a mask. They took some melted plastic and draped it over my face, dont worry, this doesnt burn, it was actually quite a pleasant feeling! They used the mask everytime I went in for a session, to line me up with the zappers in the right spot. They will probably take another CT so that they can work out exactly where the radiation needs to be directed, and then use masking tape on the mask as an indicator so the same part of your husbands brain will be zapped each time. He will lose hair on the entry point, and exit points of the head where the radiation is used.. My hair is very patchy! Also, the spots that are zapped will probably become a little bit sore and flaky, it feels a bit like sunburn. Sorbelene cream helps, but make sure theres no cream on his head before treatment, as it causes a sort of barrier and the radiation wont get through properly. He might get a bit headachey, but I didn't find it too bad, usually went away with a bit of panadol and a good nap, also he will probably get extremely tired. I was shocked at how lethargic I was. I hope this helps to fill in the gaps! Good luck for tommorrow, and the future, Christine
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Hey Jill Thinking of you lots! This is now the edited version ... sorry for confusing everyone. I forgot to add that you husband will most likely be in shock at the moment. The job that you do (being a carer) is such a tough one and yet soooooo admirable. That sounds pretty lame the way i have worded that, it is not intended that way at all. Have been thinking of you all morning and just "wondering". Ok, re the treatment he will most likely experience hair loss around the area that they are treating. It is possible he might get some skin reaction also (some burning). They can give you the appropriate creams to use. I was given some that was very much like vaseline and cannot recall the name of it at the moment. If i think of it i will let you know. As christine mentioned he may get a mask made also, so he will need to know that they fit pretty snug . If he experiences problems with the snugness they can give him something to help with that. The mask is plastic and it gets put in hot water to make it pliable and then it is fitted to his face. Sounds horrid, it is doable and tolerable and certainly not as bad as it sounds or what i thought it was going to be. He will most likely be sent to have a scan after the mask is fitted and they will 'plan' the treatment from that. ie This is where they get all the measurements to make sure they are hitting the correct spot. From then on in he will have to attend the radiation place daily. If it is charlie's they will give you all of your appointments at one time. That is a great thing so you can plan around them or change if needed. I think from what i have seen from my treatment and others that charlie's seem to have the best system!
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Thanks guys, that is helpful. Am off to pick up our boys from school early so that they can go and see their Dad. I find it really hard looking at him and knowing that he is not the same person and is never likely to be wholly that person again. So I have no idea how they are going to cope with it. Will not have them stay too long, my sister who works at SJOG Subi will come and pick them up and take them to Kings Park to the playground so that I can stay a little longer with Greg. I think they will enjoy that and it might give them a bit of time to 'process' their own thoughts in a 'non' threatening way. Will touch base again with you all later tonight. I really need you to be here for me on this, just keep logging in and sending me little bits and pieces. It really helps me feel that people are caring for me. Thanks heaps, Jill.
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Jill, We are all here for you. Cannot begin to imagine how you must feel. Sorry, I just don't know what to say, everyone else seems to be able to find the right words, so yes whatever anyone else has said, consider it said by everyone. We are here for you. Love Bev
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Hi Jill just wanted to let you know that i am thinking of you and your family at this time. please take time to look after yourself as you will be pulled in all directions at the moment. Take care Linda
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Hi Jill, My thoughts are with you and your family. This always sounds so trite but it is heartfelt. Whenever I get off this site I think of those like you who are struggling. If the power of thought does anything at all, then through all of the people here who pass on our thoughts, you may be able to gain some strength. My experience of kids who have lost a parent is that they are more resilient than we may give them credit for when given the truth but that they may also not know how to express themselves when afraid. It may be worth contacting a welfare/social worker at the hospital. You have so much to deal with - remember that there is always someone here to listen. Samex
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Hi Jill Just to let you know that i didnt have radiation through charlie's ... mine was done at royal perth and cassidy was my radio onco guy. Very nice man actually as most are i think, although some have not such a great name. Am sure they are great at what they do despite not having such a great bedside manner as some. I was actually under 3 hospitals for my treatment. Freo and RPH were the main ones though. Charlies for my teeth. No wonder i ended up exhausted!! Hope you are doing ok, which as samex has said sounds trite but it isnt meant that way. Julie
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Hi Samex, I have been concerned about the boys, I have tried to stick to the "be honest at an age appropriate level" advice throughout the journey but know that there are times when it all seems to big for me to handle so how the hell can they be expected to? I spoke with our eldest son (almost 😎 on Monday night, telling him that the confusion Daddy was having was being caused by swelling on the brain and that he had to stay in hospital to get medicine to try and reduce the swelling. While we were talking and I had said that I was scared and worried, I started to cry. At that point he gave me a cuddle and then I could feel his tiny body start to shake as began to cry. I told him it was ok to cry and that it can actually help our bodies if we cry because it takes away some of the tightness that we feel and allows our body to feel a bit more relaxed. I told him it was nobody's fault, that nothing can be said or done to make this happen. I had an hour long telephone conversation with the social worker today which was REALLY helpful. She will come to see Greg and I tomorrow when we get back to his room after the appointment with the radiation oncologist, so will definitely speak with her about the kids.
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Another huge blow, this one has knocked the wind out of me. I am shaking. At 1.50am this morning I am woken by a text message on my mobile phone, it is from Greg. It reads, "I have returned to room 26 - Alex doesn't know where we moved to, love you lots Gregz". I am freaking out, what is happening, I ring the ward desk immediately, no answer I get diverted to main desk and they can't get anyone on the ward. What is happening? They try another number and I get a nurse on the ward. I tell her that I have received a disturbing text from Greg and ask her to go and check Greg's room. She tells me she has been working in the room opposite his all night and he is fine. I ask her to check, she agrees to and puts the phone down but doesn't put me on hold. I wait and then I hear, CALL SECURITY, I am freaking, has he wandered off? I wait for what seems an eternity and she comes back, I can hear the fear/anxiety in her voice, Greg had his bag all packed, was dressed and was about to leave to find room 26. (He is in room 26). She tells me she is going to get security to come and 'detain' him and will call the night doctor. She will get him settled and then phone me back. What do I do? Greg rings me and tells me he was going to go to room 26 but says he has been sprung and that he has to wait there. I tell him to stay there and try to get some sleep. I know he is not understanding anything I say. I send him a text telling him I left photos of the boys for him in room 26 and that he should look at them for me and wait there. I get another text from him "I've packed the photo's, MRI and note pad. The door now has on it room 26 on it so we have to stay put and want me to go back to sleep. They appear to get this sort of thing quite regularly, so have systems in place to handle it. What room are you in?" My heart sinks..........I send him a text back (he seems to be understanding more if it is written rather than verbal), I tell him their systems are good and that he should stay there. I know where room 26 is and it is a nicer room than mine, so I will come to his room. He should have a sleep while he waits for me. I ring the ward desk again, it rings and rings. I don't want it to divert so I hang up and try again. My mobile rings and it is Greg's number showing but the nurse is speaking. I take a breath. She tells me he is calming down, they have given him a mild sedative under his tongue and she has another if she needs it later. She tells me someone is sitting in the room with him and will stay there all night with him. She has taken his mobile off him and will keep it until the morning and that I should relax. She will phone me if anything else happens. Relax? How the f@#* do they think I can relax. So here I am at 3am in the morning (WA time) posting an SOS message to you all. What am I going to find when I go to see him this morning? I have had 2 hours sleep, only 3 hours the two previous nights. I had a horrible feeling that today we were going to get more bad news, we have a friend whose birthday it is today. Each time we have had bad news, it has fallen on a 'significant' date. I am shit scared.
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Just to top things off, I had received an email yesterday with subject heading in capitals "SUCH GOOD THINGS HAPPENING THIS WEEK". Naturally I didn't feel that way and the fact that it came from Amway whom I have been trying to piss off for months didn't help. I sent a reply back ( I have met the people who sent it) saying, Please take me off your mailing list. Greg is in hospital with a newly diagnosed secondary tumour on the brain, his prognosis is poor and the subject heading for this email is very upsetting. After firing up the PC so I can come and seek some 'sanity' with you all, I notice an incoming reply. Subject Heading "RE: SUCH GOOD THINGS HAPPENING THIS WEEK". Hi Jill, I have been thinking of you oftenand not knowing if it was OK to call and just say Hi. Would that be OK? My response. ........ No. Nothing more, although I wanted to say, you insensitive f@#*ing B****, can't you read, I told you your subject heading is upsetting and you send it back to me AGAIN. F@%* off.
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Jill Geezus I don't blame you one bit for freaking out. I'd be doing the bloody same if it was me but I would have mobilised half the Italian population in Melbourne too! I'm sure hospitals are versed in things like this happening however I could never understand how nurses could easily say 'Don't worry, everything will be fine, just relax'. I've barely contained myself from yelling "Relax? You want me to relax? My husband is in pain, he's scared and I don't know what's going to happen and you want me to f**ken relax? Why don't ya go f**k yourself lady?". I'd rather they didn't say anything at all. And as you said, running on little to no sleep kinda complicates matters. Your freaking out level goes up a few notches as does your I'm totally shitting myself level. And with good cause. I really hope that Greg is a bit more lucid today and if you need to vent any more Jill, come find me! And definitely go see the social worker at the hospital. They are total lifesavers... Please try take care. Jo xxx
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Hi Jill, Just keep talking when you need to. Always someone here to listen. Hopefully the social worker was of some help. Have you tried the cancer help line direct to talk to someone face-to-face so to speak? Thinking of you S
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Hi Jill, Just checking in, im still hoping and praying for you and you family. Hope that your looking after yourself, and that you've gotten some good news by now. Thinking of you all, love Christine xo
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I am at a loss for words and tears sting my eyes. My thoughts and prayers are with you - you sound like a beautiful soul with a strong spirit. Sending you lots of light xxx
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Hi, Hows hubby going and you of course, my son had a gr 3 now its a gr 4 if you want to talk i am available rarsie
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