Your post reminded me of my own little explosion earlier in the year.
My hubby has a stage 4 brain tumour and was diagnosed in Mar 09. He had surgery in Mar 09 and his sister who lives 20 mins away only visited him once when he was in hospital.
In May he had another seizure from fluid build up in the brain and ended up back in hospital. He had a fever the day he had that seizure. I called her at 4 to tell her I was worried about him. We spoke again at 5.30p.m. that day. My other sis-in-law visiting from the US was at her house and I was calling to see if someone could come sit with my kids so I could attend to hubby. He had the seizure at 7p.m. I call the ambulance and then I call her thinking she or her husband or her son (all of whom can drive) will get in the car and come pick up my daughter. 30 minutes later she calls to ask if the ambulance officers will be taking him to hospital and telling me I need to keep her updated. I can't believe she is still sitting at home but politely ask that she send someone to pick up my daughter so i can go to the hospital with hubby. I spend the night at emergency with hubby. He was transferred to the private hospital the next afternoon. She comes to vist at 6pm the next day. She then proceeds to give me a lecture about how disappointed she was with the way I handled things the day before and how because of my ineptness he could have died. I bit back tears and said nothing at the time wanting only to go to bed not having slept for 2 days. The next day however I sat down with all of his siblings and their spouses and gave them a piece (or maybe more :)) of my mind. I told them I was appalled at their lack of support. Coming from a big family (who are all overseas) I have never seen such lack of compassion. I also told her that I was done with providing them with updates, if they wanted to know how he is they can come see him. Her excuse for why they had not come earlier was because she didn't know how serious it was and she had to organise a sitter for her kids (the youngest of whom is 13!).
So you see we all have our moments and sometimes a vent is required to release all that is pent up.I now vent at the gym....much healthier 🙂
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I am not giving them an excuse just giving you an explanation. I think people can't cope with us changing.
In my case I am the go to person in the family. I have been since since I was 18. Mum and dad used to rely on me for errands. With my husband, he'll willingly tell you that I run the house, his schedule and the kids schedule. I make things happen. So, when I couldn't do that any more...what happened? Noone would believe me! About a month ago, things came to a head and I went to see my GP for a few days off work. I was just too exhausted to give a damn any more. She gave me a week off. On my first day off hubby had a list of 3 things he needed me to do for him and mum had a list of 2 things. I was so tired (emotionally and physically) just the thought of getting dressed had me on the verge of tears. Did I get any rest during that week? very little....I even told everyone at home to pretend I did not exist for a week (mum and dad are currently living with us to help out). That lasted for about 15 minutes.
So you see, although you would like people to understand that you could do with a return of at least some of the care and concern you have shown them, it will take time for them to adjust to the idea of you needing some tlc not being the one giving the tlc.
Keep asking and eventually they'll get the idea.
I joined the gym four weeks ago (after my week off did not work) and now at least twice a week I get 2 hours all to myself to reclaim my sanity.
And if they still dont hear you...dont worry...you have us on this forum 🙂
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Hi Mrs Elton
I agree with everyone else...if you can't get your oncologist to understand you, its time to move on. Having said that, I too am going to have a talk with my hubby's oncologist at the next appointment next week. Hubby and I are starting to feel as if the neurosurgeon and the oncologist are only giving us information on a need to know basis. In 2000 when hubby had a grade 3 brain tumour, that worked well for us because we could ignore the gloom and doom and focus on moving forward. This time around hubby has a grade IV and we are worried that we might not be making the right decisions (as to what to do with our lives at the moment) because we are not being given all the information. So, I am going to try to get the oncologist to understand that I need the guts and all of hubby's current condition. Since hubby was diagnosed in Mar 09, I have been able to be positive but the last week or so have been difficult not because I have lost faith but my gut tells me something is very wrong. I am hoping that today's scan will prove my gut wrong. I suddenly feel like we don't have much time left. Can't relly explain why.
Anyway, I hope you had a better appointment (yesterday?).
All the best
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Hi Mrs Elton
My husband was diagnosed late Feb 09 with GBM,a stage 4 brain tumour in his frontal lobe. We were told he would have anything from a day to 2 years. We have 2 girls aged 9 and 3.
In March he had an operation to remove the tumour and has been on chemo since April. We told the 9 year old that dad is very sick, that he had a tumour removed from his brain, that he would be grumpy because of his treatment and that he needed some peace in the house so he could heal.
My grandmother passed away in April and I took that opportunity to talk to her about death. I have also spoken to her teacher at school and she has started seeing the counsellor at school.
I also have her spending more time with her grandparents and with my closest friends so that she has a support network to turn to if my carer responsibilities increase.
In May hubby had a massive seizure at home and we had to call the ambulance. The younger one was with her grandparents but my older one was home. It was such an awful thing for her to watch...her dad, a big strong man, having to be taken out on a stretcher by 4 ambulance officers. One of the officers gave her a hug and told her not to worry he would take care of her dad and I think that made a huge difference. She was a little worried for a while but bounced back pretty quick.
We too have tried to keep things normal. I have continued to work full time. However, we have deliberately filled our weekends with more family time. I have also allocated alone time for each of the girls with dad during the week.
In August we were told that my husband had a recurrence but the doctors wanted to watch to see how fast the new tumour was grwoing. A scan was scheduled for 4 weeks later. During the four week wait, we took the girls to the Gold Coast for a week as we were worried his mobility would be further affected if the tumour became aggressive. So, I try to keep things normal but I also try to ensure we'll have no regrets.
My younger one is a little too young to understand. According to her - dad is all better because his hair has grown back.
I worry at the moment about them having to witness his slow deterioration. But for now we take it a day at a time and we keep lines of communication open.
As you know its not easy turning theory into practice especially since each child is so different.
All the best.
(Sorry this got a little longer than I meant it to)
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This time around hubby's diagnosis was done almost immediately. However, in 2001 things were oh so different. A week before his birthday he had a seizure (his first) at home. I called for an ambulance and after being grilled for what seemed like a long time they finally agreed to send one. The ambulance officers who arrived treated hubby as if he was a drunk. He was very disorientated after the seizure and although by the time they arrived he was able to get up, he had no recollection of what had happened and had wet himself. Anyway, he gets taken to the emergency department and they run the whole gamut of tests. At one point there are 4 doctors looking over his scans and one is consulting a book ( I begin to get worried then). They ask if he has had previous injury to his brain and he mentions a fall he had when he was 10 when he hurt his head. The next morning they deem him well enough to go home. However, as he has had a seizure, he is told that a neurologist will have to clear him to drive.
There was no way hubby was going to stay off the roads for a long time so he immediately made an appointment to see a neurologist in the city (we lived in the country at the time so had to wait a month for an appointment). The neurologist took one look at his scnas and referred him immediately to a neurosurgeon. After the tumour was removed we were told that if it had gone on undiagnosed, by the end of that year it would have been inoperable (because of location) and he would probably have died. I am very thankful we bought ourselves another 8 years all because of his stubborn streak. Now we face a different battle (its gone up a grade) and I am counting on that stubborn streak to get us past the line again!
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Hubby had an MRI end July and we were told that there was an anomaly noted on the scan. He is scheduled for another scan next Monday and we have been told he might need further surgery. The tumour removed in March 09 was a grade IV glioma (GBM). I was wondering if anyone has had this experience. Can an anomaly turn out to be something other than a tumour? I know we should probably be asking the neurosurgeon these questions but we were so shocked last visit to hear about the possibility of a regrowth in 5 months that we didn't think to ask and next visit is almost 2 weeks away.
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I am by no means strong, just super determined. My 9 yr old is really the one I worry about most. The younger one is too young to understand but the 9 yr old is already noticing that life after cancer diagnosis is different. I have organised for her to speak to the counsellor at her school and am trying to set up a support network for her to turn to just in case I am not able to be there for her as we all know how hectic it can get caring for a loved one and running the house at the same time.
I am lucky that my parents have come to live with us to help us out ( at least most days I feel lucky.....some days mum makes me feel like pulling my hair out :))
I can't imagine what it would feel like to have a terminal illness but I do know that it is challenging to be a carer of someone with a terminal illness. Hubby is always surprised when I give him my perspective of things. He can't remember a lot of the things that happened at the hospital pre and post op and when we talk about it he seems surprised at what i tell him we went through.
I think its amazing that you and your hubby are coping so well with a double diagnosis of cancer. I guess we dont know how much we can take til put to the test.
All the best to you and your family.
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I've just read this post from the start and feel so much better. I am normally an optimist and nothing really gets me down. However, last week, we were told that there is a recurrence of hubby's brain tumour (only 5 months since his resection in March) and it took the wind out of our sails. He will probably have surgery in 4 weeks time but his original diagnosis of GBM and the recurrence had me feeling like the odds were being stacked against us. Reading the posts above have given me a boost. We are off the the God Coast with the kids this Saturday for a week and I am sure thatw ill give us theb reak we need and get us psyched up for round 2 with this tumour. Hubby is only 50 so I want him around for another 30 years!
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I am not so slowly losing my partner in crime to GBM so I have an inkling of how you must feel. Its like you are at the end of a process I have just begun. Although my partner is still fighting the good fight, I have already begun feeling alienated from things happening around me. I attended a function last weekend with my mum and my girls and I felt so out of place. I didn't feel like dressing up to go out in the first place...then when I got there I felt under dressed and it just seemed like I was in the same place as everyone else but living an alternate reality.
I know I am not unique in my plight in that many women before me have lost their loved ones but that somehow does not make it easier.
Everyday he is less the person I know and more the person this disease is turning him into.
Hang in there and take time to just breathe.
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Cancer Council NSW would like to acknowledge the traditional custodians of the land on which we live and work.We would also like to pay respect to elders past and present and extend that respect to all other Aboriginal people.