The last time I blogged, things were really dire and messy, I had no idea what was going to happen and I was scared out of my mind as Rob had his first CT since diagnosis. Well, some good news, perhaps to give some of you hope. Rob was given the all clear last week!!! No more cancer is present in his body at this time! YAHHHHHH!! I am OVER THE MOON! While we're not out of the woods yet, this was such a boost for us and it has renewed our strength to finish off Rob's treatment. Rob has been getting rather bad neuropathy of late, so his team have decided to stop the Oxaliplatin for his last two cycles. We're so close to the end, so we don't want any permanent nerve damage. I must admit that the past week was quite hard emotionally for me. When I mentioned it to an acquaintance, they rather bluntly said to me 'What's the problem? He doesn't have cancer anymore!'. Hmm well that is true. I've been on hyper alert since July last year, now after these results, I can relax a little. Only thing is, I'm not sure how to do that. Not too mention, all these emotions have been pushed aside for so long, last week they all came tumbling out in a big ole mess! Now that I can relax a little, I have really come to see how exhausted I really am - I'm rather burnt and toasty. Good thing is, now I can take some time to look after me, especially as I got sick again last week. Pure exhaustion, I think. Friday, I slept for 4 hours in the afternoon and it was the best sleep I have had in... months! I've got out for dinner, shopped with hubby and just relaxed in general this past weekend. Plan on doing it again next weekend LOL. I think Rob thought he would sail through the past week but I can see he's struggling with it all too. We are both so happy to have come this far, but like so many people here have said, it does take it's toll (how could it not?); I think Rob is finding it difficult, just like I did, to come off hyper alert and try get back to 'normal'. Good news for me. As some of you know, I had a road accident in 2006 which wasn't my fault, it has left me rather banged up. Just after I lost my job, my solicitors announced that the TAC have granted me a Serious Injury Certificate. This means I can sue under common law for damages and it has, to say the least, taken a big weight off my shoulders. The settlement conference is in early March and hopefully, it will settle on that day. I'm not entirely sure how much I may be getting but Rob and I have started to look at house plans and I've test driven my next car! I'm nervous but excited as once settled, Rob and I will be set up quite well. I haven't found a job as yet; I'm doing some part time temp work which has taken some of the strain off us so we're managing. The TAC news really took some of the pressure off us and we're just taking a day by day. Isn't it amazing that one week, your life can feel like it's crumbling but the next, your life is right where it's supposed to be? The past couple of weeks have been a real rollercoaster but it has filled me with hope that life will get better now.
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Regular Contributor
fabulous news!! Woohoo. I'm glad they've taken him off the oxaliplatin. As you know. I have been left with dodgy feet and if he is OK without it for the last 2 rounds that is great. Bear in mind that the last few treatments may be the worst regarding fatigue so maybe be prepared for it if it hits. I remember one day I dropped my son at school and then did the groceries. I looked across the car park to the fruit shop and just couldn't do it. When I got home I took in the cold stuff but had to leave the rest for an hour until I had recovered. I felt OK after a rest but that day was a doozey! I'm so glad to see that you both seem to have turned the corner. Is the much needed holiday still in sight? As someone who has noticed from ythe writings here of what many of us(survivors) have dealt with, the "new normal" is something that you may have yet to contend with. From what you have told us here, I'm sure that you and Rob will deal with this "new normal" extremely well. You seem to be sensitive to (perhaps because of your own experience) the changes that may have to take place and the changes of perspective. This can only help both of you in tis next post-treatment phase. This seemed very convoluted - i hope it makes sense! Anyway, glad to hear that things are improving. Samex
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Great news for you both!! Glad to hear things are on the up n up for you too. :) Julie xo
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Hi Jo, Wonderful news for both of you. Hope the settlement 'conference' goes well. All the best, Jill
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Versaillon - I am so happy for you both. You said Rob was diagnosed with bowel cancer in July last year, I was diagnosed with the same in August last year. Wow to be told you are cancer free is the best news I could ever hope for so I can understand your exhilaration. You said it has renewed your strength to finish off the treatment - I understand that - having a hard time of chemo myself. Also I am so happy that things are looking so much better on the financial front. Don't take anything for granted and have a wonderful life together.
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Hey Samex! Oh I'm glad too! His feet and hands were getting worse and worse and his oncologist said that it would get worse before it got better which seems to be the case. And he's definitely more tired this cycle but he seems to be handling it ok. I just encourage him to rest when he needs it and try to get a good nights sleep! Oh yes the honeymoon is still on track! We're thinking of heading to Bali for our first year anniversary (September). Which I for one, can't wait for!!! Jo xxx
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Hi Jill Thank you. I hope things are going ok for you. Jo xxx
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Hi, Yes the neuropathy seems to get worse before it gets better so tell Rob to hang in there. I aeem to be 2 years ahead of Rob and Cats so if I can be any help let me know. As cliched as it sounds, I have been there and the last rounds are really tough. My other piece of advice is to maybe talk to someone when it does finish. I was one of those people who while so grateful that the sickness and fatigue was over, also felt very afraid of what to do next. Versaillon, you seem to be so perceptive of the pain and anxiety of Rob that know you may well do this if he wants it. I wish that a greater fuss had been made of me when I had the final all clear scan and the picc line was taken out. (I hated that bloody thing in my arm). All we did was go home. I would really have loved a celebration of some kind. Rob may be different. Any way - really glad that you are on the final stretch of this part. Samex PS I love Bali!!!
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Hey Samex Rob seems to be rather determined to go back to his normal shifts at work and get back to what he calls 'normal', after everything is finished. Will be another 3 months before his port comes out (he flat out refused a PICC line as he has his arms tattooed and didn't want them ruined LOL). I'm always looking at how other people have coped so it's good (errr, that doesn't sound right) that someone has been there before us. I've actually passed on some of your advice re fatigue to Rob and he says you were spot on! So thank you for that, we really do appreciate your insight :) Rob has decided he wants to hold a BBQ get together for our family and friends to thank them for their support and I think so he can feel as if he is still part of life 🙂 I think it's important to really acknowledge this milestone. I support whatever he needs to do to get himself to a point of 'comfortable', but have also pushed him to talk more about how he feels - like most men, he has a tendency to push it aside and pretend it doesn't really exist. I'm sorry about the neuropathy issues you have - I know it all to well - the underside of my left arm is completely numb due to nerve damage and it's a right pain in the bum. It's almost as if you've lost part of yourself, even though it's still attached to you. I gotta be careful not to lean on anything hot or too cold! As many people have said to me and no doubt, said to you, we should be grateful that we're still here which is absolutely true... but it doesn't mean we don't think about how we used to be. It's a grieving process all on it's own I think. I can't wait for Bali!! Take care of yourself Samex :) Jo xxx
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Thanks Cats!! I was absolutely dreading the results, scariest experience of my life, bar my accident. It was a huge relief to get the all clear but also sent me into a little meltdown as all my emotions just flooded out! It's given us a lot of hope and inspiration for the next stage of our lives and with chemo being so hard, it just makes Rob more determined to get through it so he can get back to living, so he says :) Chemo is so hard isn't it? Keep going with it Cats and keep looking foward - you will be in our shoes soon too! Keep us up to date with your chemo and how you're travelling, feel free to ask about anything that we may have experienced. It's not so lonely, knowing people have been through the same stuff you have - that I've learnt from Samex who gave us the heads up on the fatigue and neuropathy issues! (Thanks Samex!) Take care of yourself Cats and just yell if you need a chat :) Jo xxx
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Thanks Julie! We really appreciate your well wishes! Take care of yourself ok? Jo xxx
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WOOWOOOWOWOWOWOWOWOWOWWOWOOOOOHOOOOOO! Congrats JO and Rob, I threw Tommy a surprise party and got his best friend up from SA for a week, just so he had a marker that imprinted into his brain celebrating the REMISSION word. I had read a few times on this site people feeling disappointedd they hadn't celebrated this milestone so I orgainised it for three weeks post chemo and there was about 40 of us. It was my birthday so I pretended we were going to dinner for that! (Had to make something up as we NEVER go out for dinner lol). Anyway, Tommy had a ball, and it was a good chance to thank all of those wonderful people who had helped us out so much along the chemo journey. Mind yourself Jo as you are dead right about the flooding of emotions. Everyone really fell apart once we got the remission go ahead. I was truly like a packhorse carrying everyones wait around then. Thank God for all of you!!! But it eases up pretty quickly if you recognise what is going on as it seems you do. And you know we are always here in cyberspace whenever you need us. Celebrate away you two!! Splash out on a good bottle of champas darling lmao!! So soso sososososo sososososo for you Alana :-)
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WOOWOOOWOWOWOWOWOWOWOWWOWOOOOOHOOOOOO! Congrats JO and Rob, I threw Tommy a surprise party and got his best friend up from SA for a week, just so he had a marker that imprinted into his brain celebrating the REMISSION word. I had read a few times on this site people feeling disappointedd they hadn't celebrated this milestone so I orgainised it for three weeks post chemo and there was about 40 of us. It was my birthday so I pretended we were going to dinner for that! (Had to make something up as we NEVER go out for dinner lol). Anyway, Tommy had a ball, and it was a good chance to thank all of those wonderful people who had helped us out so much along the chemo journey. Mind yourself Jo as you are dead right about the flooding of emotions. Everyone really fell apart once we got the remission go ahead. I was truly like a packhorse carrying everyones wait around then. Thank God for all of you!!! But it eases up pretty quickly if you recognise what is going on as it seems you do. And you know we are always here in cyberspace whenever you need us. Celebrate away you two!! Splash out on a good bottle of champas darling lmao!! So soso sososososo sososososo for you Alana :-)
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Hi Thats' fantastic news......I hope now that you can start to live out your dreams.....Good luck too in March with the TAC settlement. Great to hear that finally you can relax and make plans..... It probably still feels a bit unreal for you and I can understand that it might be difficult re-adjusting.....but after all you've both been through I am sure you will cope and move on quite quickly. Good luck and take care ...really nice to hear some good news.... Willow xo
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Thanks Alana!! I am ECSTATIC! Yeah, I feel like a packhorse too. Last week, it kinda all just come flooding out and although I knew I was tired, I didn't realise how exhausted I really am. But this week has been better just as you said it would :) Rob decided that he wanted to hold the BBQ and announced it to a friend before I even knew about it LOL. It was a case of 'We're having a BBQ?' and he nods 'Yep we are'. OK I guess we are then! Funny you should say champers! A friend of ours in Hong Kong sent us a bottle of 1992 Bollinger when we told him the good news! It was a great surprise and we're saving it for our first year wedding anniversary to celebrate how far we've come! I hope you are doing ok. I've been thinking of you lately. Jo xxx
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Thank you Willow! It does feel a little unreal still but it's getting better with every day! I read your blog Willow and I'm sorry you are going through a rough patch. Just know that it will pass and you are entirely entitled to how you feel. I must admit that I admire those patients (like my husband and yourself) that continue to go to work while having treatment. I don't know how you do it but I can certainly understand your frustration. It's hard to see people go on with their every day lives when you are stuck in limbo or your perception of life changes. People here care and we will listen whenever you need it ok? Take care xxx Jo
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