Oops, I hit the wrong button, will start again. A week and a day ago my husband was a person living with cancer, who had sailed through chemo treatment with hardly any time off work. Scan results were showing his primary oesophageal tumour was barely evident and peritoneal cancer hadn't changed from scan in August. A week ago our lives changed forever when he was diagnosed with an aggressive 4 1/2 cm secondary tumour on his brain (right frontal lobe) with a lot of swelling. I had noticed mood swings and some personality changes in the last couple of months, he had been quite unpredictable in his responses. I put it down to stress, he hadn't been talking to anyone about his cancer and how he felt about it, so I thought he was just 'overloaded'. Two weeks ago, he had a big week, played golf 2 days in a row with nights out after each (an annual event with work colleagues). He went to work next day and then had a sleep study that night (Tuesday) to determine if he sufferred from sleep apnoea. Wednesday he was tired, Thursday morning he played golf again, then had meetings in the afternoon and Friday he worked most of the day. I expected him to be tired, but he was falling asleep at the drop of a hat, he also mentioned that he had a headache start on the Tuesday night and it stayed with him for the week. I thought maybe he was a bit dehydrated. Thursday he met me to pick up my new car, when he arrived he wasn't himself, he seemed very vague and didn't seem to be understanding/comprehending as normal. He thought it was Friday and then forgot that he needed to sign some more papers, (which obviously he shouldn't have done-in hindsight) immediately after he had been told that he had to stay to sign them. Alarm bells were starting to ring. I asked him not to play golf on Saturday morning as it was forecast 37'C. He said he would be fine. He didn't finish the round, came home early and slept. Sunday morning he slept in till 10.30ish then while I was out hanging out washing, he got up and got dressed in his work clothes preparing to go to the office. He thought it was Monday. Now I was really scared, this was real confusion on his part. He was adamant that it was Monday and that our sons and I had no idea when we were telling him otherwise. I convinced him eventually and he got changed, got into bed and then slept the rest of the day. Monday morning he got up and went for his 6km walk with a friend but didn't take our dog. That was very unusual. As he was sitting at the breakfast bar eating breakfast he was falling asleep. He went back to bed and I took our boys to school. On my way home I phoned the oncologist's rooms and told them what had been happening over the last week. They agreed he should come in for a head CT, it was booked for that afternoon. Immediately he came out from the scan, I was told that they had found a 'lesion' and that there was a lot of swelling and they wanted him to be admitted immmediately. They had phoned his oncologist and we were to wait till he rang back. I knew it was serious, I had no idea how serious. It was all making sense now, the mood swings, the forgetfulness, the unpredictability, the vagueness, fatigue, headache and confusion. A week ago today I was told that he may have 2-3 months, that treatment is to try and minimize the effects of the tumour, to try and provide quality of life, rather than extend life. He has had 3 radiation therapy sessions, with 7 more to follow. His headache has gone and the confusion/vagueness has reduced, which is all good. His thought processing is affected, as his memory ability. He doesn't believe there is anything wrong, he feels normal and good. He can hold a conversation really well, it just isn't always accurate, in his mind it is. Five days ago I was told he is not deemed 'competent'. I wonder if he ever will be again? How I would love to be able to turn the clock.
19 Comments
Not applicable
oh dear!!! I feel for you!!My favorite saying lately has been some days should come with their own delete keys.. want to borrow mine? Sally
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Hey Jill I can only imagine what you are going through right now. You must simply be reeling with all that has gone on for you of late. I am really sorry to read of your husband's situation at the moment. gotta send those cyber hugs again :) Julie
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Frequent Contributor
Julie, Julie, Julie, What can be said? You sound so strong, with so much happening to your husband and having two young boys to care for as well. We are all here to help support you. Yes, hugs and thoughts to you.
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Thanks ladies, life pretty much sux right now. Greg is home today which is wonderful for him but just adds extra work to my load. He is not coping with his loss of independence, I had trouble keeping him under some semblance of control before all this and now, well, it is going to be very CHALLENGING. We have two radiation treatment sessions left this week, so have organized another Mum to get the boys off to school tomorrow and then will have to make arrangements for Thursday, last day of school term. Friday my Dad is going to take Greg to his work xmas function down in Freo, and I am going to try and get some xmas shopping done and be like a 'normal' Mum for a while. The boys will spend the day with friends. Will let you know tomorrow how I 'cope' with the first 24 hours of having Greg at home. Dad is staying with us till Friday night, not sure what happens after that. Jill.
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Hiya Jill Glad to hear you have some help at the moment. I am just wondering if the cancer council have people that help out in situations like this. Have fun doing your chrissy shopping. It is such fun shopping for the kids! Julie
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Hi Sally, A delete key, what a wonderful idea, I DEFINITELY want one! Jill.
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Occasional Contributor
Hi Jill, I cannot possibly imagine just what you are going through. You are obviously a very strong person (as all supporters need to be I guess) but you seem to be taking it to a whole new level. I think we can all take strength from you. Are you able to get some 'home help' to get you through the difficult times when you need time-out. Family can often be very willing to help but I suspect that they come to it with an emotional attachment. Maybe someone else skilled in this type of thing may be what is needed. Getting the bad calls that you have unfortunately had makes my woes pale into insignificance and I feel a little guilty having a whinge. I am not sure that anything I could say would make a difference to the situation except to say that I am sure everyone who reads this feels the same for you. Remember that our thoughts and prayers are with you and your family. Kym
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Hey Kym So good to hear from you, I was hoping you would still visit and keep up with what is going on. Two friends came and cleaned the floors/bathrooms etc for me yesterday and put clean linen on the beds, which was really wonderful. Other school mums have been making meals for us most nights which is very helpful. Will have to talk to the social worker again, yesterday was her day off and today have just got back from Greg's radiation treatment and are about to head off to our son's school concert. I thought life was busy before, it has all climbed a few knotches now! Take care and thanks for your message, it really does make me feel good when I read everyone's caring messages. Jill.
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Hi Julie, Thanks for the cyber hugs, I'll take all I can get! Jill.
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Regular Contributor
Hi Jill, You seem to be coping with an awful situation really well. Remember to take all of the help that is offered. Maybe when Grag is home, even though it is hard work, you could try to suspend the unnecessary "normal" stuff and just focus on some quiet time with him, yourself and the kids. I hope that the shopping went well for the kids and go the gift voucher for anyone over 12. If they don't understand then they are not worth worrying about!When I was on treatment it was gift vouchers all round in 2007 - no way could I face shopping malls. More cyber hugs from me as well and for your family, S
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Hi Samex, I am definitely accepting help whereever it is offerred. There is no way I can do this on my own. Shopping hasn't happened yet, I only have my sister and a nephew to buy for and our boys and Greg. I might even buy myself a pressie too! A lot of the normal stuff is on hold right now, in terms of home duties, I was just hoping to feel like a normal mum for a few hours by going out and facing the hordes of people filling up shopping centres. Thanks for the cyber hugs, Jill.
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Hi Jill, Sorry, I have been rabbiting on about myself and just read this blog. I am so very sorry. Your husbands tumour is very similar to my primary - frontal lobe 6cm - large amount of swelling when first diagnosed. I hope the radiation therapy continues to help. My thoughts are with you and the boys. What a horrible, terrible, rotten thing to happen at this time of year!! I understand after being diagnosed xmas day last year - I realised my behaviour had changed and I couldnt remember how to artifically inseminate a cow and went to treat a dog that I had discharged three days earlier (as well as falling asleep and being grumpy!) It is a least a blessing that he has not yet had any seizures - I hope that it stays this way (my prayers and fingers are crossed). I Definately love the idea of christmas shopping for cancer patients and their families - I wish I was on the west coast to be able to pop in and do something (even something small) for you and your boys and husband, Stay strong, Love the man he is and always will be, difficult though it is in a situation like this. Nicole
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Hi again Jill, Just read your previous blog, ( I have a bit of catching up to do) I agree - scream, shout, buy a punching bag do whatever you damn well feel like and under no circumstances apologise or excuse yourself for putting yourself or your family first!!!! (ESPECIALLY TO ANNOYING email/ tetemarketers/selling schemes/ extended family that usually dont generally give a rats/ coworkers/ staff etc etc etc. AND DONT APOLOGISE to nursing staff in neuro wards that are not watching neuro patients appropriately - be grateful he rang you - I spent last xmas/new year in a major capital city hospital neuro ward - I was not that confused, but my roommates were - the nursing staff on the major public holidays were mostly temps and didnt really give much of a rats until they absolutely had to - when I complained about one man's behaviour (who thought he was escaping from a POW camp in Germany) they called for a psych assessment on me - it took them 2 hours to realise I was fine, the poor old guy nearly escaped the ward though. PUT YOURSELF AND YOUR FAMILY FIRST AND DONT APOLOGISE FOR IT - YOU OWE NOBODY ANYTHING!!!
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Hi Jill, Make sure that you get yourself a pressie!! Make it something that you wouldn't normally indulge in for yourself. Take it easy this week and lots more cyberhugs for you and your whole family. S
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Jill are you on the west coast? Where abouts? I am as well Sally
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Hi Nicole, Just sent you a PM and then came to check here and found your posts, oh well.... Don't feel bad about 'rabbiting' on, your situation is just as important, it doesn't change anything for my situation. We all have our own issues to deal with, and they are real and important to each of us. I am so glad that you have started 'posting' comments again, I really feel the 'shared' experiences with everyone on this site can help relieve some of the frustration/isolation/crazy stuff that we all go through. I totally agree that it is a blessing he hasn't had any seizures, his oncologist has said it is less likely now, but it is always in the back of my mind.......no that's not right, it is often at the front of my mind. Poor you, being diagnosed on xmas day, I've heard of the naughty and nice list, but geez, that is really crap to be dealt on xmas day. Yes it is a shame you are not on the west coast, cos it would be great to catch up, but seeing as you're not, just keep touching base with me online, as I find it helps me get clarity and helps me to re-charge my batteries when they are running down. The support from people like you and everyone on this site makes such a difference to me. By the way, personally I think it is best to forget how to artificially inseminate a cow, doesn't sound like a 'nice' job to me at all!!! Jill xx
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Hi Sally, Yes, I'm on the west coast, there are a few of us west aussies on this site! Makes it a bit tricky with online conversations with the daylight saving everywhere else!!! Jill.
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Hi samex, I did buy one thing 'for me', but it wasn't anything particularly exciting.... just happened to see a collapsible cup cake carrier thingy so on impulse I bought it. I have lots of friends who make wonderful cupcakes with lovely decorations, maybe I will have a reason to start doing some too now! This week is fairly full again. Monday the whole family will go in with Greg for his radiation session, I asked our eldest son if he would like to see how it is done and he said yes, haven't actually asked the youngest yet. If he doesn't want to watch, I will sit with him in the waiting area. I thought it might help them to understand that it doesn't hurt Daddy when it's happening if they can see how it is done. After Greg's radiation, we will drop him off at his work office and go on to my friend who does my hair so that I can have a cut and colour and feel like a new woman for a while! My Dad will pick up Greg from the office for me. Greg is just going in to 'walk them through' a few of the things he had been working on. Tuesday we have a full-on day, will drop the boys at a friends house at 7.30am, so that I can get Greg in to Hollywood for 8.30am for a port flush. At 9am he has a chest/abdo/pelvic ct scan. After that he will have his radiation session and then we have an appt with the oncologist with the ct results at 2pm. Wednesday, a friend is taking Greg to radiation for me, and her two boys (same age as ours) will stay with us and have a play. Then another family are coming for morning tea. Thursday, Greg has last radiation session at 9am and then we see the sleep apnoea people at 10am for a follow-up appt. Somewhere along the line, I need to wrap presents, buy one gift voucher and fill in some paperwork to get to Centrelink. I think Mum has taken me 'off the list' for food preparation for xmas day, aside from taking strawberries, which I need to pick-up on Wednesday. All sounds exhausting doesn't it??!! Jill
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Phew...I am exhausted just reading about your upcoming week -- one step at a time and just breathe - easier said than done I know. I am sure that you will soldier on, chin up and all that and be the mother and wife that you are - but we will all understand if you have a screaming banchee moment - I have become a great fan of these moments (and the ugly cry (to quote Oprah) ) over the last 12 months 😄 ... you do leave other people slightly bewildered, but you feel much better afterwards (ok better done in private, but you do feel much better afterwards) Nicole
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