Soon to start chemotherapy

Hi Lays88,

I'm so sorry to hear that you have been having such a rough time with your treatment. What you have described sounds awful. You are incredibly brave and resilient to carry on. You are doing amazingly! Hopefully, the fact that you are now at the halfway point offers some comfort. You're on the home stretch now. It must've been great to have your mum and dad there for you for a few days. I don't know where I'd be without help from my family.

Great news that you are beginning to feel better. Fingers crossed that this is a sign of a much better couple of weeks ahead.

I've had a bit of a setback this week. Only six days into my first cycle, I had to pause the capecitabine, because it has caused havoc with my bowels. I'm now waiting for my system to settle down, until I get to speak with my oncologist next week. I think the underlying issue is an interaction with my diabetes medication. It wasn't until I took it upon myself to stop that also, that things have begun to settle down. 

You look after yourself.

Wishing you all the best for the weeks ahead.

ah your words really help - thank you. It is so hard but I try to keep going. The side effects are starting to ease and then I start to get a little apprehensive about the next cycle; knowing that I have a good 10 days - 2 weeks of hardship. I just hope it will be worth it in the end.

Family are absolutely amazing aren't they! They've stepped up massively and I am so appreciative.

Did you get to speak to your oncologist? Will you carry on with the capecitabine this cycle or postpone until the next cycle? It's frustrating i know but it's definitely better to take precautions. Hopefully they will get the meds right and you'll be able to carry on. How are you feeling now? You are doing amazingly too, considering the interruptions you've had. Have you been keeping busy?

Look after yourself too and speak soon.

Hi,

Always great to hear from you. I'm sure what you are going through will be well worth it in the end. Sorry to hear that your experience so far has done nothing to quell your anxiety. I'm with you on that one, and I can't see things getting a great deal better until this is all behind us.

Unfortunately, as you know I haven't been making a lot of progress recently, but having spoken to the oncologist this morning, I am now back on the capecitabine.

I finally managed to quell the the bowel issues. It looks like the diabetes medication I take was upsetting my gut. My GP said he would prescribe something different, but what I got is identical. No idea how that's going to work, but the oncologist did also say that I should keep taking it. Just have to see how it goes but I am beyond frustrated now. It feels like this chemo is going to take ever to get through.

Oh, and to top it all, I have another bladder infection, and another course of antibiotics 

Now just waiting for another schedule update. I still have eight days of capecitabine left to complete the first cycle, so whatever they decide, I definitely won't be starting my second cycle next week.

We'll get through it, one way or another. I'm pleased that your treatment is keeping close to the schedule. It'll be over before you know it.

Stay strong and take care!

I'll let you know as soon as I have anything further to report.

Hi RCFlyer,

How are you? Hope you are ok - these disturbances to your treatment are so frustrating. Hopefully it's just getting the balance of meds right in cycle 1 and going forward it will be smoother. Really thinking of you and sending all the positive vibes your way. Have you any news on when you will start cycle 2?

You're right, we will get through it and we have to try to keep positive. Although, some days that is really quite difficult. I'm starting cycle 3 tomorrow and feeling quite nervous. I saw the doctor on wednesday and he is reducing the dose of oxaliplatin a bit due to the reaction I had last time. Although this should reduce the chance of another reaction, I do hope that I'm still getting enough of the medication to zap any stray nasties. They say that it will still be effective as I was on the highest dosage so hopefully it will still do the job. 

I will let you know how it all goes and hoping to hear from you soon.

Take good care.

Hi Lays88,

I'm pretty good at the moment, thank you. I've finally finished my first treatment cycle, and have a longer break before my second, which is now on 12th October. Still not taking my diabetes medication, because I'm worried it's just going to upset things again. I've got a call with the diabetic nurse next week, so hopefully she can sort something out for me.

More importantly, how's cycle number 3 going? I feel for you, and I really hope that your reduced dosage means any side-effects are now minimal, or better still, non-existent.

Take care and stay strong! You're over half way through now.

Hi Lays88,

I just thought I'd check in, as I haven't heard from you in a while, and i was getting a worried about you. Here's hoping that all is good, and your treatment is progressing well. Wishing you all the best.

For me, I'm nearly a week into my second round now. The original cold shock and jaw side-effects have ramped up this time, but my new diabetes meds seem to cured the other issue. Fingers crossed.

Take care, and stay well.

Hi RCFlyer,

I am so sorry I haven't replied for so long :( I am fine though. I've just been so tired and even easy tasks seem to take so much of my energy. 

I am so so so pleased to hear that your second round is going well, especially with the new diabetes meds. I think the cold weather is not helping the cold shock. I am in my 'week off' of cycle 3 and I'm still experiencing this affect, albeit very mildly. Have you had any other side-effects? I really hope that it continues in this way for you. Are you managing to keep yourself busy throughout? What have you been up to?

So I am going to be starting cycle 4 on Friday and even though I am anxious as always, I can see the end in sight. Cycle 3 has been hard but manageable, if that makes sense. My parents stayed longer at the start (6 days) which was an absolute godsend. But i've been nauseous and tired throughout. And the cold shock really bothers me!! That's one thing I'm not looking forward to for cycle 4 since the weather is getting so cold. To be honest, I am just sucking it up and accepting that these side-effects are there but in the grand scheme of things, the treatment will be worth it. And I'm lucky I'm not getting the more severe ones.

I'm kept busy with the children and there is always chores to do around the house which I do as and when I am able apart from the daily bits that are needed. Like feeding the children! But they are being so good. I had a parent's meeting yesterday for my daughter who has just started school and it was a glowing report which was just so delightful. I am feeling positive as we go forwards and hoping a healthy mind and healthy choices (food and exercise) will only mean good things for us. 

I have a CT scan on the 4th November. Which is also the very last day of my chemo tablets. And the day before my birthday! I am hopeful that it will come back clear and I can start to move on. 

Please let me know how you are doing and I will definitely respond more often going forwards. You are doing so well and I am proud of you and your positivity :) Your messages mean a lot to me.

Look after yourself and we will get through this together :)

Hi Lays88,

Don't you worry about me, it's just so good to hear that you are managing your treatment so positively, and getting excellent help from your family. I was genuinely concerned, when I hadn't heard from you in a while, that you might have hit a rough patch. It's such a relief to know that you are just concentrating on getting on with job of getting better.

Hopefully you are making the most of your week off. It sounds like your children are doing you proud. Especially as your daughter's progress report must have given you a massive lift, and huge reassureance. Tiredness is really difficult to deal with. I find myself hit late afternoon, and occasionally having to take a nap. Unfortunately, a luxury you probably can't afford yourself, with two youngsters keeping you on your toes.

With cycle 4 on the horizon, I can understand that you are still apprehensive, but you are so close to being able to make all this distant memory. Your current attitude sounds great. Keep positive. You are going to get this done.

For me, apart from increased first-bite jaw pain and mouth cold-shock, the only new side-effect I've noticed this time is this cold sensitivity in my finger tips. That still catches me out sometimes. However, one of my daughter's has kindly given me a stinking cold that I really could do without :0(

Although it's rather unconventional, I couldn't think of a better birthday present for you, than an all-clear CT scan. That really will be a day to celebrate.

Well, I can't think of anything else to report at the moment. Just to say again, that I'm so pleased for your progress, and your strength.

Take care and keep your excellent outlook. It’s all positive. We'll chat again soon.

Hi RCFlyer,

Your messages are always so lovely and really help to raise my spirits. Even though I hadn't responded sooner to previous messages, please know that I had read them and they really helped me to keep going. And also know that you are in my thoughts as we go through this together.

My week off has been busy!! I had my son's parent's meeting today and was equally as good as my daughter's and it just made me so proud that they are still thriving You are right - it is such a reassurance.

Yes I don't have the luxury of napping however I am so bad at napping!! I do get to put my feet up during the day when the kids are school. Except for today (the day before my infusion), which is when I try to clean the house and get things in order before I am out of action for 5-6 days. I am so glad you are getting to rest :) I think it actually is really useful during this treatment.

So i had my blood tests and doctor's appointment yesterday. Everything seems to be going ok. Except one of my blood tests showed a slightly elevated level of CEA. I didn't know what this was but apparently it's a protein increase that can sometimes indicate some rogue cancer cells. My oncologist is so straight up and I really appreciate this. He also said it can also be caused by some of the side effects of the chemotherapy. Now obviously I am hoping and praying that it is the side-effects that have caused this slight elevation of this protein buuut I can't help feeling a little worried about it. I really just want this to be over and not sure I could really take any more. I know I would do it if i have to but the 'end' is really helping me to stay positive. I haven't told anyone else about this result, but I wanted to share it with you because it means that it's out of my head and you understand more than anyone.

Aw no, a cold. I hope it passes quickly and you aren't suffering with it. And that the other side-effects are keeping to a minimum. Do you know when you're next cycle will start? And that first bite jaw pain is really something isn't it! I always forget about that and it'll take me by surprise tomorrow. 

You are right about the birthday present! Lots to celebrate overall I'll spend it with my family down in London (which is a good hour and a half from me) and hopefully we can all get together and have some quality family time. 

Thank you again for all your wonderful words - means so much to me.

I'm so incredibly pleased that your having minimal side effects and I really hope the next two cycles happen according to the plan for you. Sending all of my most positive thoughts your way.

Keep me updated and I am going to do better to keep you updated. Stay positive and stay strong

Hi Lays88,

Thank you for your lovely words. I can’t express how much our chats help me to deal with all of this. It’s all very well talking to friends and family about how I feel, both physically and emotionally, but as much as they try, they can never be expected to fully ‘get it’. Having this opportunity to chat to someone who is on the same ‘rollercoaster’ is invaluable.

I’m so pleased that your children are doing well at school. It shows that they are happy where they are, which is so important to being able to learn.

My sleep patterns have been trashed, but I’m trying to get them back into order at the moment, and avoid the naps. It’s not something I’ve ever really done, and I never feel great when I have one. I feel for you, the first week on the capecitabine is really draining.

It was never really made clear to me how they use the CEA figure, but from what I led to believe, it is just an indicator and there are a whole lot of other factors to take into account along with it. I’m sure that the results of your scan will be a big factor in determining how you have progressed. Maybe it’s not the attitude to have, but I am simply putting all my faith in the people who are treating me, and trusting that they know best. I don’t have any reason to doubt that, as the oncology team have been fantastic, and I have every confidence that they are doing the best for me. I’m sure this is the case for the team treating you. Please don’t worry about a small glitch, but be focused on getting to the end of treatment. Only one more cycle!

I have four days of this cycle left, and my next infusion (third) is on 2^nd November. It feels like a long way to go. Then hopefully it will be the fourth (and final) on 23^rd November, and finishing up mid-December.

London will be great! I was just trying to remember the last time I was in London. It doesn’t feel that long ago, but I’ve just worked out when it was, and it’s scary how time flies. It was March 2015, when I went to see a band at The Roundhouse. A great venue, and the one and only time I’ve been there. I used to be ‘uptown’ virtually every week, in my (long-distant) youth. I was always at, what was then Hammersmith Odeon, which I now believe is the Apollo. Saw some fantastic bands there. Thinking about those times has made me smile.

Just in case I don’t hear from you before then, but I hope I do, I’ll wish you the happiest of birthdays for next month. You have a fantastic time, and get plenty of ‘you’ time.

Positivity all the way! Take care, and try not to let it get you down.