Bowel Câncer Chemotherapy

[Bianca88]

Hi 

My name is Bianca, I’m 31 and was diagnosed with stage 3 bowel cancer in July. 

I’m not sure if anyone else has experienced this but I am struggling mentally with my chemotherapy. I have just started my treatment for bowel cancer (CAPOX), which includes an infusion every 3 weeks and tablets two weeks followed by a week break. I have 8 cycles. I have always tried to look after my body, never smoked, drank, tried to exercise and have been a vegetarian for the past 16 years. Usually I wouldn’t even take Panadol for a headache unless I absolutely had too so the idea of Chemotherapy terrifies me - along with all the stuff I had read online. Now I have started it (I’m on day 6), the symptoms so far haven’t been too horrendous but I am terrified they will progressively get worse and that’s all my brain can think about. I’m struggling to function day to day because my anxiety and panic is through the roof. I was even considering giving up on the chemotherapy yesterday because I was not coping mentally. I don’t want to do this of course but I’ve been getting so worked up it’s difficult to think straight. The doctor has prescribed me antidepressants but they will not be effective for another 2-4 weeks apparently. 

Has anyone else felt similar to me, that would be willing to share their story? (Please no horror stories). I’ve felt very alone through all this and there doesn’t seem to be any support groups in Canberra. I was connected with a buddy through Bowel Cancer Australia but never heard back from my buddy.

[iloveyoudearly7]

Hi Bianca,

Your feelings and fears are absolutely universally felt with thousands of others going through a similar experience. Chemotherapy and the unknown is a naturally scary thought, especially when reading or hearing about the potential side-effects but everyone reacts differently. Some barely feel the effects while others will receive some form of degree of it.

Some of the story - My loved one went for a few rounds of chemotherapy for some months; the effects seemed to stay steady but had gotten easier for her over time. She experienced some hair loss, slight feet ache (which was eased with an ice pack), upset stomach and general tiredness. The doctors and nurses were there to provide assistances and recommendations during the chemotherapy treatment. Everything was a step-by-step process for us but we knew that it was a necessary remedy to remove/shrink them. Radiotherapy is also another effective way.

Like you, she was frightened about the lasting effects of chemotherapy to her body. But once the chemo was completed and about 6 weeks had gone by. She started to become more herself again, she had more energy and experienced less tiredness. She started to recover from the effects. The rest of the story isn’t related as it’s completely different from there.

Take it one step at a time, don’t over Google the side-effects as some or maybe even more probably won’t apply to you and if you ever have questions, please ask your treating doctors or even get a second opinion. They are there for you, like we are there for you.

Here are some suggested articles:

https://consumer.healthday.com/cancer-information-5/mis-cancer-news-102/most-cancer-survivors-say-ch... - Health Day - Most cancer survivors say Chemo fears unfounded. Survey polled US Adults who had undergone cancer chemotherapy within the last 5 years.  Everyone is different.

• Around eight out of 10 cancer survivors said they had been fearful prior to starting chemotherapy, with most (76 percent) worried primarily about side effects such as hair loss, nausea and fatigue.
• Looking back, almost two-thirds (62 percent) said those fears were unjustified. Just 14 percent described their side effects as "very difficult," and about a third (32 percent) had a "somewhat easy" or "very easy" experience with treatment.

 http://chemocare.com/chemotherapy/side-effects/anxiety-and-cancer.aspx - Chemocare - Anxiety and Cancer tips

https://www.breastcancer.org/treatment/chemotherapy/fears - Dealing with chemotherapy fears -  suggestions at the bottom

 https://www.cedars-sinai.org/blog/10-tips-to-survive-chemotherapy.html - What’s it really like going through chemotherapy – Their experience  

For additional supportive services:

https://cancerqld.org.au/get-support/cancer-emotional-support/cancer-counselling-service/ - List of supportive services via the cancer council.

Ph: 13 11 20 – You can even contact the Cancer Council directly for supportive assistance or recommendations in your area.

 https://www.cancervic.org.au/get-support/connect-and-learn/ask-a-nurse - The Cancer Council Victoria (AUS) – You can speak with a nurse or even e- mail one your general questions, if you like.

1300MHCALL (1300 64 22 55) - Mental Health Services Access. They are able to provide information regarding supportive services and etc. Anyone can use them.

https://coloncancercoalition.org/community/stories/survivor-stories/ - Bowel cancer journeys. 

Please do keep us updated regarding your journey!

[PhilPepper]

Hi Bianca

I thought I was young for this stuff. I'm 47, I'm also in Canberra and wouldn't you know it, stage 3 bowel cancer. We have some other similarities. I hate taking drugs in general, so chemotherapy was a real challenge.

I'm on cycle 3 now, Oxaliplatin and Capecitabine. Three week cycles. Diagnosis in June. Surgery in July. Chemo started in August. I know you don't want to hear horror stories, but the reality is that everyone's journey is different. One person's horror story may not be yours so you can stress less.

My catch phase - chemo sucks balls. But so did surgery. So did finding out about cancer. What it comes down to is knowing that at 47, I could let go, but I couldn't let down the people who need me. I have a new outlook on life and I feel so detached from the person I was. The people who need me have been here for me and it helps to deal with my horrors. 

What I find really amazing is this forum. It has helped me to open up and talk about things I'd normally bottle up. Like yourself, I've not found a support group for bowel cancer in Canberra, but I find this site to be an excellent substitute. These days I don't feel like I'm gaining as much as I used to but I've become hooked on giving back. And I've established some friendships on the forum which has been rewarding. I encourage you to stay on the forum and keep telling your story.

Anyhoo... I suffer anxiety before every chemo cycle and it's a tough gig. Meditation helps, thinking positive helps, but it still fails me every time. Yet I still turn up and go through it. Each cycle has been different and I can't wait for it to be over. Keep each one as a milestone and count them down. Every side effect is a notch in your armour. I know I'm going through it for the right reasons.

I have one more thing to add. Dogs help cure cancer. If you have a dog, post a photo. This is my Charlie.

And those are Bonnie's feet behind him.

Hang in there. Reach out if you need to.

Cheers

Phil

[Bianca88]

Dear Iloveyoudearly7,

I’m so sorry for not replying sooner. I was so grateful to receive your message. The comfort it gave me was immense and I am so thankful to you! The links were extremely helpful and I know you would have spent a bit of time compiling it so thank you! Thank you for also sharing some of your story and your loved ones story. 

[Bianca88]

Hi Phil, 

Thank you so much for your message! It certainly does sound like we have some similarities. I’m on the same combination of chemo too. I begin my second cycle next week. I’m really sorry to hear about your anxiety. Sometimes our minds seem to have minds of their own which certainly doesn’t help an already difficult situation. I actually went to a hypnotherapist the other day and they were somewhat helpful. It was all about getting into a relaxed state so that your brain is more receptive to positive thoughts. But it already sounds like you are doing this through your meditation and positive thinking!

Seeing as we we are both in Canberra if you were ever interested or wanted to catch up for a chat I’d like that but certainly don’t feel obliged too. I understand if you’d rather not. 

Thank you for sharing the photo of Charlie!! He’s gorgeous!! I love animals! Unfortunately I don’t have any dogs but I do have two cats which I love dearly!! Theodore and Bonita (but she usually gets called Bonnie would you believe!!). They bring me a lot of joy!

Anyway thank you again for your message! Best wishes from Bianca

[PhilPepper]

Hi Bianca

I'm happy to catch up. What day does  your chemo cycle start? I'm on the improve following my cycle starting last week, although I'm in my peak of fatigue and low immunity right now. Perhaps before the anxious start of your next cycle and when I feel confident to drive again. I'm living at Googong but I have a lot of flexibility this week to go anywhere around Canberra. And I should probably take advantage of it this week with the fine weather predicted.

🌞🌞🌞🌞🌞🌞🌞🌞🌞🌞🌞🌞🌞🌞🌞

I'd love to see your pseudo dog (cat) photos. Since you don't have dogs. But you must follow the pattern. A photo of Theo with Bonnie's feet in the background. 

I'll show you my Bonnie now. This time a smiling face. She is a butt head. But isn't she gorgeous. No one should have husky puppies. Rescue them after they turn 2. Trust me.

 

I was just posting a response to Lampwork, pointing out that I've started to find the rhythm which I can't put myself into before chemo starts. My pattern unfortunately is anxiety and depression before chemo starts. It's like being asked to drink petrol. You know it's not good for you. How stupid though, it can save our lives. Meditation does help. And I play a lot of music before chemo cycle starts because my singing voice comes back (mostly) and the strings don't hurt my fingers. Unfortunately I can't pick my guitar up at the moment. Cold strings sting my finger tips. Seems so stupid. Towards the end of this week they should be feeling okay. I don't think I'll be able to sing properly again until November when the chemo has stopped.

I hope you are feeling better being at the end of your cycle. Hang in there. Chemo is tough but it brings results. It should be a lovely day in Canberra today. Remember to avoid too much sunshine. Chemo makes us light sensitive.  Like vampires I guess. 🧛‍

Ciao

[PhilPepper]

Hi Bianca 

Has your next chemo cycle started yet?

My current cycle just ended early again. I've been in hospital for a couple of days which has been frustrating. 

I hope you well

Cheers

Phil

[Bianca88]

Hi Phil,

I’m so sorry to hear you’ve spend the past few days in hospital! I can imagine it’s been incredibly frustrating and probably quite upsetting. I hope you’re feeling a bit better now? Are you home? Have you got a Support person living with you or someone who comes to check and help you out?

The whole process is a lot to deal with isn’t it! There are so many physical, psychological and   Financial impacts of having cancer. We all know cancer is bad but until it’s directly affected you or someone you love it’s difficult to appreciate the gravity of just how bad. But I guess it’s the same as anything in life, everyone suffers and has challenges which you’ll never fully appreciate until you’ve

walked in their shoes.

I’m so sorry that you have been going through the anxiety and depression before each cycle, that’s incredibly tough! It’s very difficult to try and control your mind when the only thing you have to control it is your mind! But although I really don’t like taking medication I figured I’m already taking chemo so when my doctor suggested antidepressant I thought perhaps I should try. I know it’s just a “bandaid fix” but I have found them to be helpful actually. They calm me enough that rational thought can actually penetrate my mind! So it might be worth having a chat to your GP about it if you haven’t already. My doctor told me these particular ones she has prescribed aren’t addictive either (as I’ve heard some can be) and should be fairly effective although they can take 2-6 weeks to work. I think they do work straight away but it just takes 2-6 weeks before they are “fully” effective! She also gave me some Valium to help in the sort term with panic attacks. She warned me that Valium is very addictive though so I only take it when I really need to. It has been a great help too. Obviously your circumstances and needs won’t be the same as mine and I’m certainly no expert on medication and medical conditions but might be worth mentioning to your GP and see what they think if you haven’t already. It may not be right for you but just thought I’d mention encase it was something you hadn’t thought about

 

. 

I’m so glad to hear you are finding comfort in your music though! What sort of music do you enjoy? I can appreciate any music really, apart from death metal lol. That’s brilliant that you can play the guitar too! I’m unfortunately not rhythmical gifted haha

I’m so sorry I hadn’t got back to you sooner!! I just started my second cycle and I haven’t been feeling too crash hot.

Hmm it seems that we are on alternating cycles so it could prove a little difficult for us too meet up but I guess we can still provide support to one another through this online forum if you’d still like too

I’ve attached a photo of my puddy cats. Unfortunately they are a little less cooperative than dogs so I couldn’t get them in the same stance haha.

Anyways please reach out if you need to! You can get through this Phil! I know you can because so far your track record for getting through bad days has been 100%!!!

Best wishes from Bianca

[Wyandra]

Hi Bianca

I'm 69 ( much older than you), male with wife, 3 adults kids, 4 gchildren. I got diagnosed stage 3 bowel cancer December. It was a shock and upsetting, and I start 6 months chemo next week. Hospital and clinic staff are terrific. Try to stay calm and write down any questions or fears you have, and speak to them. This forum will help as well. The unknown side effects also worry me, but I pray for God's peace and help as I face it day by day. Try that for yourself. I know time drags when you're sitting around at home, but try to read a good book. All the best.

[Bianca88]

Hi Wyandra,

Thank you for your message! I’m so very sorry to hear about your diagnosis. I’m glad to hear you have a wonderful treatment team at the hospital though! I also found my treatment team to be incredibly kind and compassionate people. It certainly helps having a good support network around!

I was actually diagnosed at the very end of July so had my surgery in mid August and started chemotherapy in September. I’m just finishing my 6th cycle so hopefully I’ll only have 2 more cycles to go!

I know everyones experience is different but if I can provide you with any reassurance the chemotherapy for me definitely hasn’t been anywhere near as bad as I anticipated. I was absolutely terrified at the prospect of doing chemotherapy. I think it terrified me more than when I was told I had cancer but that was because I knew so little about it so was basing my knowledge off what I was reading on the internet and on television.

It’s such a scary thing because you hear so much horrible stuff about chemotherapy.

I remember when the triaging oncologist came to speak with me the very first thing he asked was “so what do you know about chemotherapy?” Looking back now I can see why he asked this question because chemotherapy really does have such a hellish reputation and I guess he knew this needed to be addressed.

My response was “not a lot. I know you feel very sick and lose your hair”.

He was so calm and reassuring. He said that the type of chemo I would be on it would be unlikely for me to lose my hair although it could thin a little and that they have excellent anti nausea medication these days (very true!), many of which are specifically for cancer patients and not generally accessible to others. He told me about a couple of side effects but assured me that they would monitor me throughout the treatment process and do everything they could to make the journey as comfortable and easy as possible (which they have definitely done!). I felt so much better after speaking with him, I went from feeling very apprehensive and scared to calm.

He asked if I had anymore questions and at the time I couldn’t think of anything but after he left and I had time to absorb everything, other questions began to pop up and of course I turned to Dr Google (bad idea!).

Silly me! I worked myself into such a state again reading about chemotherapy that I no longer believed anything the oncologist had told me. I just thought all these people Im reading about have gone through chemotherapy so they know what it’s like and he must have just told me those things so I didn’t panic.

I now know there is A LOT of old and irrelevant information online regarding Chemotherapy! These days it is a very tailored treatment. Your oncologist will take in many factors when considering the type of chemotherapy you need, how it’s administered, how often, over what period of time, the dosage, what other medication you might need to counteract any side effects you might have and so on. You will meet regularly with your oncologist to discuss how you’re managing your treatment and what symptoms you’ve had and how they can ease them.

When you’re first diagnosed you have a million questions and want answers then and there but try to avoid google (I know it’s sooo hard!) but your specialists will have the best and most relevant information for your particular situation. I was given the same advise by a fellow cancer patient when I was just about to begin chemotherapy and I didn’t listen. It’s difficult not to google because you have so many questions constantly popping into your head and when you do see the specialist they usually have very limited time but reading information online can lead you up the garden path. 

The other thing to consider is that people often tend to comment when they’ve had a bad experience but not so much when they’ve had a better experience.

A useful tip I was given was to keep a symptoms diary and medicine log.

The symptoms diary is helpful as you get an idea of what symptoms happen and at what stage of your cycle. Example; you might notice that you feel tired on days 6-7 so you know not to plan any outings. It also helps when you see your oncologist as you can detail what symptoms you’ve been having and they will then be able to address them.

I also made a spreadsheet which listed all the medications I take and a box for morning, noon and night so I can just tick them off as I go.

Anyway I hope I’ve managed to ease your concerns a little about the chemotherapy and I apologise for the long reply!

It really is quiet mentally overwhelming especially at the start so if I can be of any help or reassurance please don’t hesitate to contact me!

I wish you all the very best for your treatment Wyandra! Take care!! Kind Regards Bianca