Planning a Wedding in the Midst of a Living Nightmare

Highlighted
Occasional Contributor

Planning a Wedding in the Midst of a Living Nightmare

*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.
Reply
0 Kudos
5 REPLIES 5
Highlighted
Occasional Contributor

Re: Planning a Wedding in the Midst of a Living Nightmare

I'm hoping to connect with some people who are going through the same. So instead of simply 'reading' my post, feel free to comment or share your own experiences. Thanks, Krystle.
Reply
0 Kudos
Highlighted
Occasional Contributor

Re: Planning a Wedding in the Midst of a Living Nightmare

Hi Krystle, I can really relate to what you are saying about oncologists being vague. I suspect that it's because there is such a wide variation in every patient's response to treatment and the progression of their cancer, that the specialists really don't want to offer an opinion at all. Sometimes it helps if you corner them with "I understand there is a lot of variation, however in the majority of cases, what is the....(insert parameter). I have found that you have to be really, really "proactive" about treatment and follow up, and be tenacious to the point of aggression. Every term you hear fall from the medical staff's lips, google it. Read the patient chart. Listen to the nurses talking in the hallways. It was only by listening in on a nurses' conversation that I found out my partner had a brain tumour - nefarious I know, but it was a long wait until the specialist consult to be told officially.... Google and read research papers on various treatments and treatment outcomes for your Mum's specific cancer.You will end up with dozens of questions as a result - then drill them down to get answers on those questions. In regards to not wanting to get out of bed, leave the house, or do any of the things you used to enjoy, please see someone about this. I know that it feels wrong to be doing normal things when this terrible event is happening to your Mum, but you can't help her cope if you are crippled by depression. Please speak to your GP and get a referral for some support so that this doesn't seriously affect your health and your relationships. You should probably speak to your Program Coordinator/Convenor/Head about withdrawal from your currently enrolled subjects - the Uni should permit late withdrawal without financial and academic penalty if you have a good reason that arose after the census date. Give yourself that one allowance, because you are unlikely to well if you are a long way behind for the Semester. Take care of yourself Krystal. It probably doesn't feel like it, but remember that eventually this time too shall pass.
Reply
0 Kudos
Highlighted
Occasional Contributor

Re: Planning a Wedding in the Midst of a Living Nightmare

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. 🙂
Reply
0 Kudos
Highlighted
Occasional Contributor

Re: Planning a Wedding in the Midst of a Living Nightmare

Hi Krystal, You sound more positive today, which is great! The forum sounds absolutely awesome, hopefully you will get bucket loads of contacts and information, and make contact with people in exactly the same situation and going through the same treatments. It's promising that you can keep going with your subjects - something non-cancer related to distract you away from the constant thoughts about treatments and appointments. The Uni should have a free student counselling service too, which could be your fall back when your psyc is unavailable. In regards to research, I've found that some of the best leads are in the "this paper cited by the following articles" list at the end of the paper, because generally these will be more recent, up to date papers which have followed on from the older paper. We FINALLY have our first oncology consultation tomorrow, a full month after the surgery - grrrrrr. We had to chase and hound to get the referral, with the neuro telling the GP that the referral had been sent, and his receptionist admitting that it hadn't - this went on for 2 weeks until we got a different specialist to do the referrals after having to hunt down the histology report from the pathology company. Needless to say we are looking for a new neuro. A friend who works as an anesthetist has recommended Brizbrain, so we will seek referral to there for follow up. Radiotherapy and chemo to come - not sure what to expect, but at least with the referral roadblock removed, things are on track again. Take care of yourself. Kind regards, Jen
Reply
0 Kudos
Highlighted
Occasional Contributor

Re: Planning a Wedding in the Midst of a Living Nightmare

Hi Jen, 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, 🙂 Thanks, Krystle.
Reply
0 Kudos
Post new topic
Talk to a health professional
Cancer Council support and information 13 11 20Mon - Fri 9am - 5pm
Cancer Information and Support

Online resources and support

Access information about support services, online resources and a range of other materials.

Caring for someone with cancer?

Find out what resources and support services are available to assist you.