Soon to start chemotherapy

Hi RCFlyer and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.

I'm really glad to hear how speedily everything has gone for you but it's natural to worry about chemotherapy. I'm currently undergoing chemotherapy for breast cancer and so far, touch wood, other than feeling tired I haven't suffered from any of the major side effects.

As the online community is divided up into different support groups I'm going to recommend that you join the bowel cancer group where you can ask questions, share experiences and get support from others with the same type of cancer.

To join just click on the link I've created and then join and start a new post in the same way as you did here. You can also join in with existing conversations by clicking on 'reply'.

It would be great if you could pop something about about your diagnosis and treatment so far into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. In fact, you could copy and paste your introduction from here.

To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

If you have any difficulty navigating the community just drop me a reply and I'll be pleased to help

x

Hi latchbrook,

Thank you so much for your kind words and advice. Also, it is great to hear that your treatment is not affecting badly.

I'll fix my profile and move on to the bowel cancer group, as you suggest 

Wishing you a full and speedy recovery.

Hi, 

I’m in exactly the same position of you. A sigmoid tumour was found in my bowel, I’ve had surgery to remove a large section of my bowel 8 weeks ago and now waiting for a 3 month course of chemotherapy which will be starting this month. I’m finding the idea of chemo a lot scarier than the surgery was. 

I’m now looking for support since I’m worried I won’t cope very well. 

Hi Lays88,

I'm sorry to hear that you are having to suffer the same concerns and anxiety as myself. Unfortunately  until we start chemotherapy, neither of us can know for sure how we will react. I have just been reminding myself that it can't be worse than the possible consequences of not having any treatment at all.

As a suggestion, if our treatment schedules are closely matched, it could be beneficial to both of us if we could share our experiences with each other. Of course, only if you are happy to, and  think this may help.

I don't know if you have been provided with a schedule yet, but i received details of the first part of mine today. It's actually starting slightly later than i was originally told, with a 'Patient Information Session' on the 22nd, and my first chemotherapy session following that on the 25th.

One of the stipulations included is that I have a blood test 48hrs before each chemotherapy infusion session, which on top of requiring regular lateral-flow tests, means I'm going to have to set up a comprehensive diary and appointment record. I started to try and do it in my Google calendar, but that got very messy, very fast. It will probably be better to create a dedicated monthly calendar i cam simply hang on the wall, or it will be all too easy to lose track of everything. My admin skills aren't that good at the best of times, so coordinating all of this is going to be fun.

Look after yourself, and hope to hear from you soon.

Yes you're absolutely right - a really good reminder to have. I'll start doing this too. Chemo is going to give us the best possible chance of this not returning.

I think that when the oncologist confirmed I'd be having chemo, reality really hit home. I am on my own with 2 young children and this worried me. 

I would really like that, sharing experiences - I believe our schedules might be closely matched although I haven't got any dates as yet. I should hear next week about appointments to set up a starting date.

I would definitely go with a paper calendar that you can hang up. I do this already for keeping up with everything going on! So will carry on with this when I get my appointments - I expect I will have blood tests and have to do LFTs regularly too.

Thank you for your support and I really hope it all goes well for you. I hope you can have some time to relax and keep positive before and throughout your chemo journey.

Look after yourself.

With the additional worries of having to look after two young children, your diagnosis must have hit you particularly hard. I hope that you are not having to cope entirely alone. Perhaps if you get in touch with the Macmillan team, someone may be able to offer some advice on available assistance while you go through your treatment. I realise this probably doesn't help you now, but looking on the brighter side, the chemo will be done within three months and you can get back to normality.

Thank you for your kind words. I'm going to try and do my best to do 'normal' stuff  before the chemo starts.

I'll still keep an eye on the discussion board, so please shout out if you have any news, or feel like a chat. We'll get through this. It's as much a fear of the unknown as anything, that's messing with us.

Take care. We'll get through this.

Hi RCFlyer,

How are you doing?

I have managed to get away with my children for a few days to Norfolk. It was lovely and much needed.

So, I am not entirely alone, I have mum and dad and siblings but they are a 90 minute drive away so they wouldn't be on hand for any emergencies (which I am trying to keep positive mindset about because they won't happen but also need contingency plans just in case!). Or at least they wouldn't be able to get to me very quickly.

I got a call on Wednesday to tell me I have my information appointment on 17.08 and my chemo starts on 19.08! It all seems to be happening so quickly now. I almost don't feel prepared or like I have very much time to prepare. I know that on day one, i'll be receiving treatment intravenously, and then chemo tablets twice a day for two weeks. Do you know what you will be having?

It is definitely the fear of the unknown and the fear of which possible side-effects, if any, we may develop. I'm also a bit worried about picking up any bugs since the immune system is affected.

How are feeling? What have you been up to?

Take care.

Hi Lays88 ,

It's great to hear that you have managed to get away for a break. A chance to relax must have given you a big boost. I've always loved the Norfolk Broads, since my parents took me there, in my much younger days. You can always rely on family for support. My eldest daughter has been driving me to my medical appointments, and has offered to take me to my chemo sessions. She's a star!

Good to know that you now have a firm date, but as you say, knowing this doesn't help reduce the anxiety. So you will be starting your treatment a few days before me. My introductory meeting is on the 22nd, with my first infusion on the 25th. It sounds like we are having the same treatment plan - an infusion (Xelox), followed by tablets (Capecitabine), twice a day for two weeks, then one week off. I believe that the initial plan is for at least three months, four cycles, of treatment,  but this will depend on how things go.

I have exactly the same fears as yourself. Especially the possible side-effects, and how to avoid the risk of possible infection. All we can really do is keep our fingers crossed for mild reactions to the chemo, and do our best to reduce exposure to places with a high-risk of infection. This might be easier said than done though. Visits with my grandchildren will have to be put on hold for a while. The September return to school is always a 'germ-fest'.

I'm not feeling too bad, thank you, but I haven't been doing as much as I would've liked. I know i shouldn't complain -but I'm going to- it's too hot! The most exciting things I've done are attending a couple of barbecues, and finally getting out to fly one of my model planes again. Not exactly the jet-setting lifestyle, eh? :0)

Please let me know how you get on with your treatment. I really feel for what you are going through,  and hope that your fears and anxieties soon melt away.

Wishing you all the best!

Hi RCFlyer,

The getaway to Norfolk was very much needed! You must have lovely memories of the place yourself.

I'm so glad to hear that your daughter is driving you to your medical appointments - the support really helps doesn't it.

I had my information meeting on Wednesday and it was a real overload of info. I did stay calm and composed throughout but I must say it was a lot to take in. I would recommend taking someone with you so that you don't miss anything important. It was quite overwhelming. I was given a library of booklets to take home. The nurse was very lovely though.

Ah yes, we are going to be receiving the exact same treatment, with the same initial plan - 3 months but depending on how it all goes. And i agree - reducing exposure to places with high-risk infection will be needed. Although this will be a little more tricky for me so back to mask wearing and upping the hand hygiene. Just like the pandemic again. We've done it before - we can do it again!!

So the nurse went through all the possible milder side-effects and for some she wrote down medicine I could take to alleviate. One of the side-effects is being more sensitive to cold things and it is recommended that you don't eat or drink anything cold and use gloves when going in the fridge/ freezer etc. There is a lot to take in and little changes to make. I think the best approach is to take it one step at a time. I would've liked a little more time between the info appointment and starting the treatment to get a little better prepared. My parents are with me for the next couple of days so they will help as much as they can.

I absolutely agree - that heatwave was toooo hot! I slept terribly!!

Flying planes?! That sounds pretty exciting to me! Is this a hobby of yours?

So my treatment starts tomorrow and my emotions are a bit all over the place. I'm actually feeling a bit angry at the situation although at the same time quite positive that it will be ok. I am hoping that once I am undergoing it, I will adapt and change as necessary and it will be easier than I think!! Fingers crossed!!

I will let you know how it goes. 

Hope you are keeping well yourself. How are you feeling at the moment? I am hoping that you are finding ways to keep a calm mind and relaxing as much as possible and also sleeping and eating well. 

Take care.

Hi Lays88,

Thank you for posting your update. It's great to hear from you. I'm so pleased that your Norfolk trip gave you much needed, and much deserved respite from all that's going on.

My information meeting is on Monday. A nurse from the oncology centre phoned yesterday to check that I hadn't forgotten about it. That's highly unlikely. She then went on to tell me that myself and my daughter  both need to complete lateral flow tests before we go in. I thought this was only necessary prior to the actual treatment days, but it appears this is now mandated for every visit. Somewhat concerning,  as it suggests that covid has become more prevalent in the area.

The nurse also suggested that I watch a YouTube video, produced by the Kent Oncology Centre, about the treatment process and all the associated possible complications. I've got to say, it certainly didn’t help settle my anxiety. In some instances it contradicted reassurances I'd previously been given by the hospital team.

I was speaking to a friend from the model flying club at the weekend, and he surprised me by telling me that he had been treated for prostate cancer, just over a year ago. He had decided that he didn't want to make this general knowledge, but when he heard that I was nervous about the chemo, he contacted me in confidence. He was not operated on, but had both chemotherapy and radiology treatment. I realise that he was treated with different drugs than we will be, but his main side effects were the hand and foot sensitivity, which you mentioned, and extreme fatigue the day after the chemo infusion. Hearing this was somewhat comforting, as this sounded manageable. Fingers crossed for us both, that we get off as lightly. 

Sorry that my response is late. You will probably have received your first treatment by the time you read this. My thoughts are with you, and I'm hoping that all of your anxiety, anger and fears can soon be forgotten, and you can can put this whole experience behind you.

Best wishes.

Looking forward to hearing from you again soon.