I just remembered, my Mum and I are going to this forum in Brisbane on Thursday and I thought that it may be useful for some of you on here. I am not sure if there are any places left, but hey, it's worth a look. If not this time, perhaps there will be another one soon?
:) Good luck!
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I am so sorry for your loss. It is agony watching a loved one suffer through cancer. We are uncertain at the moment as to the life expectancy of my Mum. She has secondary breast cancer in her bones and in the lining of her lung. Mum always says that to me, that she'll wait until she is better. She and my step-father were forced to put off a booked holiday to Vanuatu this March and are planning to go in October provided Mum can. I hope that she can. I also had to bring home my wedding from North Queensland because she may not be able to travel for it.
Perhaps once you are up to it, you should take that trip. 🙂 I do hope that things get better for you from here on.
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Oh wow! I'm an Adelaide girl originally, my family are all from there. Cancer is cruel. My Mum is such an awesome person, she is so loved. She doesn't smoke, doesn't drink to excess then bam! Cancer - twice! It sucks that in this day and age they still can't treat this damned disease. Perhaps you could consider setting up some kind of fundraiser to send them away for a weekend or something? Check out the cancer charities, they may offer something similar to Bloomhill? 🙂
Thank you, I wish I could offer more something more helpful.
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Yes, I've had a positive couple of days. Been focused on the wedding. 🙂 I'm going to need to plan something else big for when it is over to keep me sane!!
I am actually quite looking forward to the forum. I'm not sure how Mum heard of it, or I'd forward her source. She said that they have them for all kinds of different cancer. Hers is secondary breast cancer. I think she received it via email from a cancer charity that she has contacted, Bloomhill Cancer Care.
Do they have them in Brisbane? If not, they are up here on the Sunshine Coast, and Mum said they are really valuable. Perhaps they may benefit you too? They offer chances to relax and get away for patients and carers (family etc.), information, counseling and advice etc. Mum is forwarding me to them for further counseling. She said they are great because all of the staff there are former oncology nurses/medical professionals, so are apparently much more informative than a lot of the doctors and nurses at the hospitals.
That's ridiculous. They don't seem to understand how horrible it is as patients and family to have to sit and wait for them to get it together. I hope that you find a great neurologist and best of luck with the oncology appointment. Chemo is so different person to person, treatment to treatment. Mum was very sick with her first chemo and had it once a month, with her most recent one, she was having chemo weekly but didn't get as sick. She said that radiotherapy wasn't so bad.
You too, 🙂
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Thank you, it was great to hear from you. I know it sounds stupid, but the hardest thing at times is that we are the only ones going through this. I know that we are not, but it is great to hear from someone who understands.
Oh cool. I have heard that a lot of oncologists are vague, and that that is likely the reason why, but that does sound like a good way to get around that barrier, so thanks.
I understand what you mean by being tenacious to the point of aggression. It is impossible otherwise. Mum is seeking out a second opinion at the moment, which I am glad for, but we have also started doing more and more research ourselves. It is really hard to know where to start though. Mum and my Step-dad are going to the oncologist this Wednesday. Mum did hear about a forum for her particular type of cancer which is happening next month, so the two of us are going to that. There will be doctors, oncologists, nurses etc and all kinds of specialists who are conducting the latest trials so we are hoping to meet someone there who will be particularly helpful. We are trying to think outside of the box! We even consulted a hematologist recently, but he had just completed trials.
I am sorry to hear of your husbands tumor. How are you both going?
I am seeing a psychologist in regards to these issues, but right now she is incredibly busy and I can't see her when I need to, which is really frustrating.
As for uni, I just feel like if I let that go, then I'll have nothing. I feel like I need it, as stressful as it is. My tutors have been great, so I'm just going to try and keep plodding along with it. I have made a bigger effort in the last week to get motivated, it is difficult though.
Thank you, you too. 🙂
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my Mum is currently going through hell with cancer too. We are not sure as of yet how long she has or what the prognosis is. We only know that cancer will get her eventually, which is really hard.
She has just started going to a charity called Bloomhill. They provide a serene environment, offer counseling (which I am considering for myself), support, knowledge, offer discounted massages, painting classes and even the occasional couples retreat. It might not be anywhere exotic, but the one here takes them up to the hinterland to a resort where they get to enjoy couples massages, all meals etc. for only $250.
I don't know if it's any help, but they are proving very useful to my Mum.
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I too am a supportive daughter. It is the hardest thing in the world. I can't imagine anything harder than watching your Mum go through this. Like you, my Mum is my best friend and is currently fighting for her life, so I know from personal experience, that there is nothing harder than this. I am happy to hear that so far your Mum's cancer isn't too advanced, that's great. 🙂
My Mum is referring me to Bloomhill. I do not know whether you have them near you, but they offer all kinds of services to carers, such as counseling (which I desperately need!).
All the best, I hope that she recovers well.
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*Long - sorry this is a bit of a book, but I have to get it out. It's been running over in my mind since Mum's diagnosis*
My Mum was first diagnosed with cancer 6 years ago this June. She's been clear for 6 years, so we thought that she was 'safe' because she made it past the crucial 5 year mark.
My fiance and I finally decided to get engaged in November last year after 8 years together and are in the middle of planning our wedding. We flew to Palm Cove in beautiful tropical North Queensland to book our wedding. We came home and surprised everyone. I picked out a beautiful natural sapphire engagement ring and we have been very happy. Mum is my closest confidant and was one of the few who knew that we were going up there for that purpose. I tell her everything, even before I tell my fiance half of the time!! We are incredibly close. She was thrilled when we booked it and started planning our 'big family holiday'/wedding.
Mum and I hit the bridal stores straight away, we were so excited!! Within a month, I had picked out a beautiful big ball gown. Mum and I wept when I found it! It is perfect. Everything was going so well.
Then Mum came down sick over Christmas with a severe cough. She went to the doctor the week before and was given anti-biotics for a chest infection. They didn't work. On New Year's Day, she went back to the doctors, and wound up seeing a different doctor. That doctor ordered a chest scan, and sent Mum to the hospital immediately. Her left lung was filled with fluid - 700mls which quickly became 1.5L. The hospital obtained a sample of the fluid but would not drain it that day as gaining the sample was a painful enough procedure, so they booked her in to return on the Wednesday (2 days later).
On the Wednesday, she was admitted to hospital. She was there for 4 days. On the first day, they attempted to drain the lung, but couldn't as it was too much for Mum to handle. My sister, step-father and I all went up to the hospital to keep her company. She HATES hospitals (like everyone!). The next day, everyone else had to work, but I didn't want Mum to be alone, so I went up to the hospital to be with her during the procedure.
She sounded chirpy on the phone, but when I got there, she had been crying. I thought that she had had the procedure already and gave her a hug. Then she told me that the doctor had been in to see her about the results of the sample and that the cancer was back. I couldn't believe it. I just stared at her and went, "Oh". It was so unexpected. Then, without shedding a single tear, I hugged her and said, "We've done it before, we can do it again."
Two seconds later they whisked her away for a scan. I went with her but the whole time I was thinking, "Don't let this take my Mum. I can't do it without my Mum." For hours, I was in a state of shock. While we were downstairs, the doctor in the ward had called my step-dad and told him to come home. My step-dad works in Brisbane and we are on the Sunshine Coast, so we both knew that he wouldn't be with us for quite a while. It must have been the drive from hell for him, knowing something was wrong but no idea what. None of us could have suspected that it would be cancer again.
Later that day they attempted to drain the lung again, while I held Mum's hand. They dosed her up on pain killers and attempted a local anesthetic to numb the pleura (lining of the lung). It was so painful for Mum and I cried when she cried, which set me off. It hit me then like a train. That was when my step-dad arrived. I have never been so happy to see him! When the doctor told him his face was like stone. He barely reacted, he just held Mum's other hand. Eventually, they had to abandon the procedure, Mum was in so much pain. It was horrible to watch. That evening my sister arrived, John (my step-dad) had already told her and she was crying from the moment she walked in the door. Mum then had to tell our other sister in Brisbane, but hesitated, it was her (our sister's) birthday the next day, no one wanted to bring her down. She was ok. I still don't think that she has gathered how bad this is.
The next day, they gave Mum a heavier anesthetic and finally drained the lung.
In the weeks following, we found out that Mum has cancer in 3 places - in the pleura of her lung, her clavacal (collarbone) and her lumbar (spine). She will have cancer now for the rest of her life. They have told her that they should be able to control it for up to 5-10 years, but we know little beyond that.
She began chemotherapy (and lost her hair), but they have just taken her off it 6 weeks in because it is not working. This shocked all of us, we were all hoping for some positive news. Her lung (well space between the lung and the lining) started to fill up almost immediately after they had drained it the first time. She has a horrendous cough and she gets short of breath very easily. They have put her on Femora, and she is begging to get a few of the terrible side effects which are supposed to come with that drug. It is horrible when she coughs, I just want to scream, "Get out of my Mum!". She was also supposed to have radiotherapy but so far we haven't heard any plans to proceed with this. Personally I do not hold much faith in her oncologist.
Her oncologist is vague as all hell. We ask her a question, she'll answer with a generic, clueless response. She is uninformative and is not helping us in anyway. It seems that since chemotherapy did not work, she is unwilling to do anything else. It is hard. Mum is now searching for another oncologist, but it is difficult. She can't afford private treatment - despite the fact that we have all assured her that we will find a way if that is what it takes. The bone cancer is slow growing, and at this stage not posing as much of an issue, but the lung is a constant battle. Unfortunately, surgery is not an option. At the moment, we are having to try and accept that Mum will not be with us for as long as we all hoped. It is agony not knowing how long we have.
I have been trying to focus on the wedding. We have cancelled our plans up North and bought it home. Can you believe that the venue would not refund our whole deposit? They kept $1000 as a holding fee, despite the fact that we cancelled for a genuine reason. Since, we have booked a venue locally. My fiance's parents and my parents have seen it and love it, so things are back on track. We have bought the wedding to July, instead of September as originally planned. Mum's health is so unpredictable, I dare not leave it until the end of the year.I lost my Dad 10 years ago, the thought of my Mum not making my wedding too is unbearable. It is unbearable enough knowing that she may not get to meet her grandchildren - something both she and I have been looking forward to.
I'm not coping so well though at the moment. I don't know what to do. This is supposed to be the happiest time of my life, and yet I cry every day. It is so hard to be planning this amazing happy event when you are so miserable. I barely leave the house, or want to. I barely want to get out of bed. I am supposed to be doing uni (I have fallen so far behind) but I just can not motivate myself to. My tutors know and have been excellent, but to pass, I still have to do the work, and I just can't. I do go to my personal training sessions 3 times a week and go to the gym on alternate days, but I do little more. I just can't. Unfortunately, I don't even have a job right now to keep me occupied. My fiance gets so frustrated, but what can I do? I feel like my life has just stopped.
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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.