So here I am, not sure what to expect or have any clue what to do - bit like starting a new job really.
My husband Rob was diagnosed with bowel cancer 28th July 2009, one month before our wedding.
Pretty mindblowing news really. Yep, devastated, scared, tears and OMG we so aren't going to Bali for our honeymoon. Yeah, I don't really have too many memories of that day that weren't seen behind a film of tears and sheer terror. I mean, I had finally found my soulmate and this shitty disease was threatening to take him away. Well not on my watch. I've pretty much flipped cancer the bird. Losing Rob is not an option. I'm quite stubborn if you can't tell already.
Rob started chemo 2 days after we got married. Not exactly the honeymoon I'd dreamt of but hey, it keeps life interesting and Italy definitely has our names along with 2010 written all over it. And I really wasn't expecting my vows to have so much poignancy so immediately. C'mon, 'in sickness and in health'? Jeebus, I barely got 5 seconds of the health bit. But ya know, I wouldn't have it any other way. If we can make it through this, our marriage has seen the worst. The rest should be a breeze right? Right? LOL
Chemo sucks. Rob finished his 3rd cycle of FolFox yesterday and he's feeling particularly yucky, not to mention a massive aversion to the cold. That's really gonna suck in summer.
Prognosis is pretty good considering he has stage C III. All the cancer was cut out although it had spread to a few lymph nodes, hence the chemo. Doctors said it was just a 'mop up' - in other words, 'we're just gonna scrub your floors but if we miss a bit, we'll come back and clean it later'.
Now, I've had a stern talk with Robs body (while he was asleep of course) and I've made it abundantly clear that this is a one time event. No repeat performances mmk? This is not up for debate. I'm the boss and what I say goes :D
We're pretty positive as you can see. Hope is in everything we touch, see and hear.
Look forward to talking to everyone!
I am sorry to read about what you and your husband have been going through. You will probably have a number of peaks and troughs but you sound like you are a great support to him. Keep writing your thoughts on here to help you keep sane. All the best, Justin
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!
Versaillon your husband is very lucky to have you.
I was diagnosed with stage 3 in August 2007. Same deal as your husband.The cold sensitivity sucks as does the sun sensitivity in summer but that first cold drink and gelato is great!! IS he having oxalipalitan as well?
The fatigue will possibly get worse before it gets better and it is great that you have got a cleaner. As a previous patient, I always relished outings with my husband or my kids rather having the housework done, but that was me.
He may get very irritable and frustrated as well so if he is willing to talk then that is good.
When I finished treatment, my husband actually found it very difficult to relate to the fact that I couldn't just forget about what had happened. Unfortunately it isn't over with the last round of chemo.
On the bright side - all my scans and colonoscopies have been clear since I finished. I am slowly losing the weight that I put on due to steroids and my strength is returnung. OK on flat ground- still struggle with lots of stairs and hills!
Hang in there with him.
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!
I am 4 months post folfox6 chemo. I was diagnosed with Stage C bowel cancer with 3 lymph nodes involved last Nov at the age of 39.
Chemo sucks but you get through it. Just take one cycle at a time. For me, the side effects varied from cycle to cycle but the fatigue did get progressively worse. Once chemo ends, the energy levels do rise again and you start feeling like your old (pre-cancer) self.
As the partner of a cancer patient, you must remember to look after yourself as well. As the patient, I felt that my life revolved around my cancer and my cancer treatment. My husband's life however revolved around me. He had to watch me endure first surgery and then 6 months of chemo and its side effects (not easy for him). He worried about me, looked after me, managed the household and children when I was unable to, remained positive for me and propped me up on my down days. He was my support and helped me get through it. When chemo finished for me, he was exhausted too, both mentally and physically. Now four months on, my scans remain clear and we both feel that we have our lives back.
Good luck with the rest of the chemo. Hope everything goes well for you and Rob.
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 🙂
I hope your husband is doing ok. That is probably a stupid thing to say but you know what I mean.
Is he beginning to have any difficulty with the neuropathy(in hands and feet)from the oxalipalitan yet? This has been the worst lingering side effect for me so make sure that he lets his oncologist know if it starts to kick in.
I had an official meltdown at the 8th-9th treatment mark when I was just so tired of feeling ill. This was where my husband was really good and helped me through that stage and back to the clinic I went!
I know it's hard if you are house proud (fortunately I'm not!) but try to keep perspective and don't stress yurself too much, if possible, if all is not how you wish it to be. It does go back to something like normal some day.
From a survivor's perspective, one of the more difficult things for me was that when treatment finished it was expected that I would be back to normal asap. I was back at work (teaching) within 4 weeks, making lunches and returning to normal.The old normal has gone and while he may recover physically quite quickly, the emotional scars still seem to linger. As you said, you may be more empathetic as you have experienced severe trauma yourself and perhaps for you normal was never the same.
Remember to be kind to yourself and to give yourself an occasional treat. Mine was avacado and prawns at the beach!!
Take care, Samex
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