October 2009
Most women will tell you that men really don't look after their health that well and well, my husband is no exception. I guess most of us feel that we are invincible or perhaps, we don't want to hear bad news if we do dig further. Whatever the reason, I'm so glad I listened to my intuition and nagged the bejesus out of Rob to go get checked.
Back in May, Rob started to complain of abdominal cramps that came and went. Instantly, I sort of bristled and told him to go see his GP. 'Nah, I'll be fine - it's probably just some indigestion', he said.
Rob suffers from reflux and seems to believe that if he doesn't shove all the food in front of him in his gob at a million miles an hour, it may somehow disappear before he gets to eat it. I'm currently working with him on this LOL.
At this stage, Rob and I weren't married yet. Rob had had major leg surgery in December to save him from a knee replacement. I have already spent 3 months nursing a 6'7 giant back to health and he has to have his other knee done in the next couple of years so I told him that I wanted to get married before I had to go through that again. We set our wedding date for the 5th September.
We didn't want a fussy ceremony so decided to have a registry wedding, small lunch with family afterwards and then fly out for honeymoon the day after. We'd return on the 15th and then on the 19th, hold our formal reception. Things didn't quite turn out that way though.
Meanwhile, the cramps were getting worse and Robs GP had suggested IBS was the culprit. Said to change his diet and take these pills to ease cramps blah blah blah. Also books him in for gastroscopy to see if there is any ulcers etc. Me being me, came home and researched IBS. Symptoms sounded like IBS but something didn't feel right.
We book in for gastroscopy and I take Rob in for the procedure. He's got the flu because I've been sick for the past 3 months at this stage with various colds and viruses. Specialist says he should be fine and goes ahead with the procedure. Half way through, Rob stops breathing and goes blue and they have to stop! WTF? They get him breathing and all is fine. Specialist tells us that there are no ulcers or tumours present in his stomach, it all appears fine however they didn't have time to do a biopsy. OK. That's good news right?
The world crashed down around us when Robs grandfather has a massive heart attack and passes away mid June. Being Italian, the whole family has descended onto his grandmothers home to pay their respects and come together. Big culture shock to me is an understatement and Robs symptoms are put to the side while the family crumbles in grief, funeral arrangements are made and we go through the italian grieving process.
However Robs cramps are still persisting, getting worse in pain and severity. I order him to see a different GP who orders an ultrasound. Something comes up (can't remember what but was important at the time) and we postpone the ultrasound. Annoyed with myself for letting this happpen.
Around about this time, I've come off my anti-depressants because I don't feel I need them anymore. They were prescribed when I fell into depression after my major accident in 2006. I have a major incident of road rage with another driver on the Westgate (he almost ran me off the road in a fit of rage!) and I go into complete meltdown. Off to see my GP and explain what happened - I have an anxiety disorder and PTSD it seems and my anti-d's were treating it. So, back onto the medication, mental health care plan is drawn up and my GP wants me to go back to my psych for some CBT.
I'm organising our wedding through all of this and to top things off, I got made redundant from my job in May so looking for work as well. Not entirely sure how I've managed to keep it together, I have a feeling Rob may have had something to do with it - he has always had a calming influence on me. My rock.
Busily organising our wedding, figuring out how to pay for it, I strike gold and start working again. Fantastic news, on top of the world, hopefully things can start getting back to normal although family is still firmly entrenched in grief over the death of a wonderful, kind man who I miss tremendously (made me feel like family from the first day I met him!).
Rob's cramps are worsening and I push him again to go for the ultrasound. I've managed to refocus my attention back to him and really start pushing to get this sorted out. I can't stand seeing someone I love so dearly in pain.
July 16th, I'm at work and get an SMS from Rob. He's gone to Sunshine Emergency straight from night shift because the pain is astronomical. I panic but he tells me to stay at work, we need the money and he's just waiting to be seen. I stay but tell him to call me the SECOND he gets seen by a doctor.
Unbelievable. He waits 8 hours. 8 hours?? WTF? They're busy they say and ambulances get first preference to those who can actually walk in, it seems. By the time I finish work and get there, he's just being seen to.
They'll take some blood and give him some buscopan via IV for the pain. It seems to settle him a little. Bloods come back and they're all normal but he has some slight anaemia. Hrm. Unusual for men to get anaemia I think to myself - they can't take iron supplements as they can actually poison their body with too much I think. ER doctor says the ultrasound machine is completely booked out for the next 2 weeks so they can't schedule one today. Huh?
Put my faith in the doctors who should know what they're doing and they send him home. Hrm. Not too happy with this but will watch him like a hawk.
July 20th. Working my ass off to pay for our wedding. I get an SMS from Rob to say he's at Sunshine Emergency again because he's doubling over in pain. He's been there since 8am and it's now 2pm. I finish work at 3pm most days but I jump up, ramble something incoherently at boss and rush out the door. Drive like a maniac down freeway as it takes 45 mins to get home generally. Get to hospital in 30 mins, not sure how many speeding fines I got on the way, don't really care at this point.
I make it to the hospital in record time, run in door and Rob is STILL waiting in Emergency. I go to triage nurse and go berko. Demand to know when he will be seen and wait to hear 'All staff, please respond to grey alert, Emergency' as the poor nurse is barraged with questions by tired, crazy lady who has been up since 5.30 that morning.
Finally get seen and the ER GP says they will take blood and maybe try get him in for an ultrasound but don't like his chances. By now, I'm fed up and lose the plot. Why are you taking blood when you took blood only 4 days ago? Something might have changed. In 4 days? It's possible. He needs an ultrasound. We're booked out unfortunately. You're a hospital, he's in agonising pain and we need to know why - make it happen. I'll do my best. No, make it happen.
Rob gets buscopan via IV again while we wait. It's nearly 5pm and ultrasound tech goes home at 5pm. I'm not a patient person at the best of times - I go stalk ER doctor down through ER. I demand Rob gets an ultrasound. He said he will check to see if he can squeeze him in.
5pm - Rob gets in for an ultrasound. I'm relieved as finally there is progress. Bloods came back as before - slight anaemia but all fine. Hrm.
Rob has his ultrasound and the tech says she doesn't really see any abnormalities. I'm rather concerned by now. Why can't we find out what is wrong? ER doctor comes back and says the ultrasound is normal but would like to schedule in a CT scan to see if that brings up anything. They've booked it in for Friday morning as Rob will need to fast for 12 hours first.
July 24th. Rob goes in for his CT scan. Rob's sister takes him in as he has demanded I go to work so we can pay for our wedding. I finish work and head back home, greeted by smiling fiance and we head down to the hospital to get the CT results. We've made an appointment with Robs GP to review the results so head down and wait. I'm reading CT report and it says that there is a intersussception between the small and large bowel.. and I see the words 'possibility of lymphoma'. I get a very bad feeling.
The GP looks over the report and becomes quite concerned. He explains what is going on and tells us that Rob needs to go back to Emergency as he has a bowel obstruction basically that could rupture at any minute. The GP calls Sunshine registrar and discusses what is happening and tells him to ensure Rob is seen ASAP when he presents.
Jaw drop. I call mother in law, tell her what is going on. Family is on alert and I drive Rob to Sunshine Emergency. Again.
Rob is seen to within the hour. Two ER doctors and the registrar mull over his CT scans, blood is taken and there are a few concerned looks. By now, sister in law is here and I am starting to feel the beginnings of exhaustion. Been awake since 5.30, worked all day and have been to hospitals and GPs until then. I think it's about 10pm or so. Still, refuse to leave fiance's side.
Hospital registrar announces that they are admitting Rob and that they will be doing some tests over the weekend with the possibility of surgery come Monday. Rob definitely has this intersuwhateveryoucallit and they need to go in and reverse it.
Rob tells me to go home and get some rest. Oh and to go get my tax done tomorrow as scheduled because we need the money to help pay for our honeymoon. What? He makes me promise.
I drive home feeling very very exhausted but upset. My gut says something is wrong. Rob sends me an SMS - doctors have changed their minds. They are doing surgery first thing tomorrow morning! ARGH!! He tells me to go get my tax done and then come see him. Grrr.
July 25th. I speak to Rob on the phone and he tells me they're not going to do keyhole, they're going to cut him open and get it done. I'm very upset and can feel my heart going a million miles an hour. Rob tells me to get my tax done as there is no point in waiting at the hospital. I protest and he cuts me off. He tells me that he loves me more than anything and says he will see me when he gets out. I cry after I hang up the phone.
My sister in law comes along for the ride, I get my tax done and then break sound barrier to get to the hospital. Rob is still in surgery so we wait near recovery. Rob's surgeon floats past, then comes back and asks if we are his family. Surgery went well and they removed a bit of his colon. OK. Weird.
Whole family descends on Sunshine hospital and we all quietly wait. Finally, surgical registrar calls for me and I walk into recovery, heavy lead feeling in my stomach.
My beautiful partner is hooked up on all these machines and flits in and out of consciousness and I feel as if all the blood has drained from my body. He opens his eyes, sees me and I smile the biggest smile I can muster and he falls into sleep again.
The surgical registrar says her name which I instantly forget and tells me that when they went in to fix the interwhateveritscalled, they found a mass. Apparently this is what was causing the interwhateveritscalled and it does look very suspicious. I ask if it's cancer. She says she can't say as it needs to go to pathology but it did look suspicious. At this stage, I feel so numb that I can barely move.
They cut out 1 metre of colon and removed some lymph nodes for testing. Whatever the mass is, it's all gone and surgery went well. Rob doesn't cope well with anaesthetics so recovery is longer than normal however she announces that they want to transfer him to Footscray Hospital as thats where his surgeon is based and they want to keep an eye on his sleep apnoea. The ambulance will be here soon to transfer him.
Brain boggle. I ask the registrar to explain to his family as I'm not sure I can. I walk out in tears and Rob's mum goes to pieces and the family is rocked to their cores. I take my phone out and call my mum. And I cry.
The next few days are a blur as I pretty much reside at the hospital. I go to work, I go to the hospital and then home for sleep.
July 28th. I'm at the hospital after working a full day. Poor Rob has a catheter and a nasal bypass tube in. He can't eat or pee on his own and well, his bowels have just had a massive shock so he won't be needing to poop for a bit. And he's added to his scar collection (we've both got one!) with a big incision scar down his stomach. It even goes around his belly button which he thinks is hilarious. Despite all that, I love him more than ever.
Surgical team comes to see us as I was about to go home. Our lives change forever in this moment.
The tumour is malignant. It's cancer.
I go numb again however I think down deep I was expecting this. Surgeon explains that they got it all out but 3 out of the 12 lymph nodes are cancerous. I ask if they caught it early. No, stage III C. The tumour was the size of an orange which was blocking the caecum and causing the small bowel to cramp around it to try move it along to be expelled. It has broken through the bowel wall. I hear chemo and scans.
They leave and Rob and I look at each other and we hold each other. I can't even remember what happened next. All I remember was going to the car to get my phone and calling my mum in such an immense emotional pain, I can't describe it. My mum cries with me as I scream and bawl, mumbling about how could I lose him? I've finally found my soulmate and now he's going to be taken from me. How could this happen? I finally pull myself together and tell my mum I'll call her later.
Phone calls. Visitors. Noise. I called so many people that night to let them know what was going on. Rob's mum, dad, sister, brother, cousins, aunts, his boss, best friend, friends. All a bad dream, I wished. I'm not a religious person at all but for the first time in my life, I prayed to God and meant it.
The family descended onto the hospital like a swarm of bees. Most laughed with Rob which I felt was vitally important - he needed to know that this wasn't a death sentence.
I stayed at the hospital that night. Didn't budge an iota. The nurses were kind and brought in a mattress and bedding so I could be comfortable. Rob and I talked. He said he didn't want the reception. Cancel it. We couldn't go to Bali for our honeymoon. Cancel it. He just wanted to marry me. Him and I. It's all he wanted.
And that's what he got. I cancelled the honeymoon, cancelled the reception. I rearranged a few things and on the 5th of September 2009, Rob and I married in front of 25 friends and family at the Registry in Melbourne. My mum flew in from Perth despite a fear of flying, we had friends come from interstate and celebrate. We held a lunch at a restaurant in Moonee Ponds who knew what we were dealing with and they were exceptional. The day was exactly what we wanted. Laughter, sunshine and happiness. The happiest day of our lives as we married our soulmates. Each other.
Rob started chemo 2 days after our wedding. But that's OK. We'll go on a proper honeymoon once he's well again.
We've got a tough road ahead of us, especially for newlyweds but we'll make it and I wouldn't have it any other way.
If our marriage can survive cancer, the rest should be a breeze right? Right? LOL.
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October 2009
Wow Alana, that was awesome. How the hell do you manage?
It's really put things in perspective for me as I feel like I'm floundering at times and we only have 2 dogs and 2 cats, no kids!!
And yeah, I can relate. We carers have to put everything aside and be the 'strong' ones - I kinda forget that I'm a person inside sometimes and I refuse to cry because I know if I start, that's it for me. I've cried once, the type of cry where I've felt such immense emotional pain and that was the day my husband and I were told that he had cancer. Even then, I went out to the car and screamed out all my pain so my husband wouldn't worry and so he could have time to process what he'd been told himself. Since then, I made the decision that we were beating this and dug my heels in LOL.
You should be so proud. You're an amazing woman who has pulled her family through devastation. You've inspired me 🙂
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October 2009
Hey Stacey
Sorry for the late reply (I didn't realise that time becomes so precious when you have to do.. well.. everything!)
I'm so happy that you are doing so well post treatment. It really gives me even more hope and faith than I had before.
Rob's dosage was decreased due to the last round of chemo hitting so hard - he ended up in hospital shortly after due to bad bout of diarrhoea.
Rob is a big guy - he's 6'7 and built like a brick poohouse! - so he was on a massive dose of chemo so I'm hoping the decrease will make it easier on him. But as so many people have said, the fatigue does get progressively worse and one of our chemo nurses did say it's culmilative. I think the body is amazing in recovery - I've watched my own heal itself but we don't realise how much it energy it takes and how tired we can feel.
And yeah, our lives revolve around Rob's cancer right now and while it can be frustrating at times, I'm OK with this. I guess because once again, I've been there and I'm still sort of there with my own survival story. For at least the first year, everything was about my accident, my injuries and my recovery. It couldn't be any other way - the trauma changed my whole life so I had to learn who I was with a disability.
I see it as a hiccup in the smooth runnings of life and we will return to normal viewing once we work out this technical glitch.
I can't wait to be where you are. It'll be so nice to know we can go away for a holiday without having to worry about appointments, medications and chemo.
Congratulations on making it through 🙂
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October 2009
LOL thanks for the laugh guys.
Sailor, your jokes on prostate cancer were hilarious (cancer not hilarious, jokes hilarious). I passed them onto Rob and he cacked himself which I think was just the ticket for him today given he had chemo yesterday and is feeling decidedly down and crappy.
Kym, I hope things went well for you. I swear, every time we see the oncologist, I'm practically shitting myself waiting for bad news.. and I'm not the one with cancer! Ya not alone there buddy.
But I definitely think a jokes page or something similar would be of great benefit to so many of us. Fighting cancer can be so serious and draining, it's so refreshing to have a laugh and promote some positivity. As they say, laughter is sometimes the best medicine and they couldn't be more right!
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October 2009
Hi Sailor
Thanks for the advice.
Our situation is a tough one. Rob is, as I said, a public servant and the department he works for offers unlimited sick leave. He gets paid his normal salary even though he only works maybe 3-4 days in a fortnight. I work full time hours (2pm to 10pm) so it appears we are better off than others in the same situation.
I dare say, given Rob is still technically full time employed, we are ineligible for basically anything.
All I wanted was some subsidised housekeeping help as I was finding it hard to be superwoman and, even though we're doing ok, we still have rent, bills etc etc etc to pay for so any little bit would help. Alas, we have gone forward and paid for our cleaner because trying to fight the system while fighting cancer just seemed insurmountable.
Our oncologist did say to speak to the social worker at the hospital which I will do next week on our next visit. If we can find some help, it'd be better than nothing.
Jo
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October 2009
Hola!
I'm a carer and I can tell ya, I probably cry more than my husband does. There are days where I feel so robbed, frustrated, resentful, angry and then there are days where I feel so positive, so blessed, full of love and happy. Bad days, good days... it's just a lucky draw as to what you get every day I reckon - I just kinda go with the flow cos well, all I can do really and I cope as best I can.
Rob and I have found that talking about how we're feeling helps us stay connected and strengthens our bond (our marriage is only 6 weeks old). I felt guilty telling him how I felt at first because I didn't want to burden him any more than he already is but he told me that if I didn't, he just worried more about me. Weird given he's the one with cancer.
I also joined here because I wanted to connect with people in the same boat and I've found this very helpful. It's comforting knowing that I'm not alone in how I feel and that I can talk about it with those who have experienced it too.
My personal experience with Cancer Connect was that I thought the nurse felt sorry for me. I feel uncomfortable with sympathy so didn't really find it helpful but that's just me. I think that a person truly can't understand unless they've been there themselves and I find that especially poignant as I survived a nasty motorcycle accident myself.
So I guess I understand to a degree how my husband feels. I always felt that while people empathised with me, they didn't understand why I felt the way I did because they hadn't been in my shoes.
I think that's why this place is so helpful to me - there are people in my shoes here and they know exactly how I feel.
There are people in your shoes too and we know why you feel the way you do. You are never alone.
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October 2009
Oh I feel for you Larn. We don't have children (well my husband has a son from a previous relationship but he doesn't live with us) so we only have to worry about ourselves. I can't even imagine how it is trying to help children understand.
We saw Rob's oncologist the other day and I asked about the Centrelink Carers Allowance thingy (this is just a small payment, Carers Payment is the biggun that you get if you are a full time carer).
Forget it! His oncologist said to me that Rob basically had to be a vegetable (ie, needed help eating, toileting, dressing etc) and his cognitive functions affected before we were eligible for a measly $100 bucks a fortnight. Are they fricken serious?? If Rob was in that condition, I'd be his full time carer and give up my job. I was totally dumbfounded and all I can say is *&$^#@*&^$&*&*#. Rob's oncologist also said that it's impossible for those who are terminal with more than 6 months to live. If they have more than 6 months, Centrelink will not recognise that they need assistance so she always says they have less than 6 months to help her patients out. Can't even get a health care card to help subsidise Rob's medications that we must pay for every fortnight.
How utterly demoralising to keep asking for help and getting knocked back at every turn. I spoke to my mum the other day who cared for my grandfather during terminal lung cancer. Told her about what I'd experienced and she goes to me 'Oh yeah, if you're old or on a pension, you get all the support in the world, free of course. Everyone wants to help you. If you're not, you're screwed.'
So basically, if you're a hard working Aussie who has done the right thing but just had an unlucky break, the government doesn't even recognise that you might need help. How many people affected by cancer have had to stop working due to treatment and now are living near poverty as a result? We are lucky in that Rob is a public servant but I can only imagine other people who are worse off than us and the government refuses to help because they too aren't old or on a pension.
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October 2009
Wanna know what really pisses me off?
The lack of support for people under 40 who have cancer. My husband has bowel cancer, he's 31 and is a public servant. Due to his high income, my income and our assets, it pretty much puts us out of the running for many types of support.
Not only do I work full time (and weird hours at that), I'm also running the household and being Rob's carer. I take him to his appointments, sit with him during chemo, clean the house and all that entails, care for our pets, work full time and do whatever needs doing.
This week, I decided that it was becoming too much and if I continued, I'd end up rendering myself useless to Rob by running myself into the ground.
So I did a bit of research, called our local council and enquired about getting some assistance with the house. I was told point blank that they would not help us because we weren't old or on a pension. When I asked where I could get some help, they told us they had no idea. I was stunned.
So I called the Commonwealth Carelink Centre who gave me the numbers of a few places like Silver Circle and Benetas. Benetas is for aged care so strike that off our list. Silver Circle weren't all that interested in helping us and I found quite expensive - hard when you've got a mortgage, bills, debts etc. I called another place for home help who suggested we call a cleaning company, not a home help company. I even called Cancer Connect to see if they could help find someone who would assist us with no luck.
So I called a cleaning company we once used and hired a cleaner to come in once a week for 2 hours. Just enough to ensure my house doesn't turn into a hell hole while I try to deal with everything else going on. Hopefully it doesn't strain our finances too much - afterall, we have rent, bills, debt, medication etc to pay for like so many others.
I called Centrelink to enquire about getting the Carers Allowance. It's only 100 bucks or so a fortnight but would make all the difference to us - would pay for our cleaner. However on seeing the paperwork, I pretty much have to jump through hoops to even entertain applying for it. Given my husband is quite independant at the moment, I don't like my chances.
By the end, I sat in tears at the total bullshit I had endured that morning. No one would help us. They just kept passing the buck to the next organisation.
My husband is still quite independant right now, he's not on a pension and is trying to go back to work a little. Yet, many won't help us because we don't qualify, we aren't aged, my husband is still too independant or he's not terminal and we aren't on a pension.
All I bloody wanted was a somewhat subsidised cleaner to clean for 2 hours a week to take the pressure off us and so we could spend time doing more important things, like being newlyweds.
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October 2009
Hey Samex
Congratulations on clear scans etc and getting to where you are now!
Thank you for topping up my hope glass today. It's good to know that there are survivors out there who've been in the same situation as my husband (re same cancer and grade etc).
Yes, he's having oxaliplatin as well and the side effects are quite sucky! This cycle has hit him harder than the previous ones so I think he's getting a bit upset/scared as to what to expect next.
And you are right about the fatigue - it's getting worse as time progresses but it just means he needs to learn what his limits are and listen to his body a bit more.
I'm quite a houseproud person so having my house look like a train wreck soon turns my nerves into a train wreck but just like Rob, I've learnt my limits and although I'd like to think I am, I can't be superwoman. We had a cleaner last year so we've asked her to come back - we trust her and she does such a good job so I feel relieved and less stressed. I can spend more time with Rob doing enjoyable and more important stuff.
I'm sorry to hear that your husband had a hard time adjusting. I think for me, because I'm a survivor myself (I survived a motorcycle accident) I realise more so than many others, that once treatment finishes, doesn't mean it's over for you.
Once again, congrats on the clear scans and blessings to you and your family!
Jo
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October 2009
Thanks everyone!
I'm under no illusions that it's gonna be tough. It's already been tough especially given I'm working full time (weird hours too), keeping the house running and asking Rob if he's ok every couple of hours 🙂 Oh and just to make things really interesting, I have a disability in my left arm/anxiety disorder/PTSD. Lucky aren't I?
Seriously though, I don't put much stock in setbacks however there are days where I think I'm not coping as well as I think I am. I do feel cheated and frustrated. But at the end of the day, I grit my teeth and do what is necessary to ensure everything runs as it should and Rob is cared for and supported.
Speaking of, we hired a cleaner today. I got sick of calling every agency/dept/council under the sun, trying to see if we could get some subsidised home help and they all said we either weren't eligible or to call this place or that place. Is it this hard to get any sort of support or am I looking in the wrong places?
In any case, I have a cleaner, this makes me happy and now I have some time to do things I need to keep myself sane, like exercise. Or get a massage! Phwoar... now that would be grand!
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