Chemo tips please

[BobbiWillson]

Hello! Any tips to get me through chemo? I meet with the oncologist next week and I’d love to know some practical tips to help get me through, as I’m dreading it. Thank you

[SASSY196]

I'm so sorry that you have to start chemo.

My advice -

If you haven't had covid vaccine discuss with oncologist as your immunity will most probably drop. Take strong precautions against covid, if shielding existed you would now fit in shielded group.

Be really kind and gentle to yourself. Do you have support? If you don't I would just get my house in order a bit so that once chemo starts I don't have big chores to do. I am on second.line chemo, 4 chemos in and I just try to do each day as much as I want or don't want. I don't fight any low energy, I just try to go with it. I like to be outside in nature or to see friends outside, I take long Epsom baths, I go to free yoga for cancer at Triyoga ( Google) I get food delivered or friends help me out and the house is not as clean/ tidy as it used to be.

Follow the advice re medical self care, take anti sickness tablets/ steroids when told to . If you are going to loose your hair maybe consider getting it cut short before chemo starts or after first one and consider shaving it when it starts to fall out( I'm sorry to say it's not nice when you loose hair) and treat yourself to cool hat or great wig.

I also think if you are able to practice gratitude it really helps ( I wasn't able to do this for ages because I was so angry and distressed) but now I try ( don't always manage) to think of and be grateful for nice things

Actual chemo can take long time, first one 6 hours plus so dress comfortably, take gentle reading/ music or films etc to occupy self.

Good luck xxx

[BobbiWillson in reply to SASSY196]

Thank you so, so much, really helpful. Xx

[Lyndy]

Great advice from Sassy196. I would check with your unit about the length of time your infusion will take. What do they do about lunch or should you bring food with you? Chemo is generally on a 21 day cycle and you will soon get to know how your energy waxes and wanes.. I found the first week most challenging and recovery week (3) generally quite enjoyable. Watch out for anti sickness tabs ondansetron..you will get constipated. I take laxatives from the first day after chemo to avoid the worst effects!

Very best of luck… don’t hesitate to ring your chemo line if you are worried or have queries…that’s what they are there for xx

[BobbiWillson in reply to Lyndy]

Thank you, great tips. Xx

[Yorkiepudd]

Hi, I’d echo that of the ladies above especially about the constipation. The op, chemo and then radio for me meant I’d never been so damn focussed on what did or didn’t come out of me! Do take the drugs though as they really don’t want you to be feeling worse then you need to. For the sessions themselves get yourself a nice bag for your bits. Some units are cold and others boiling so a rechargeable fan and a little wrap are both useful. I downloaded stuff from Netflix onto my tablet to watch and make sure you’ve got a long charger. I love reading but couldn’t always concentrate. I took a larger drink bottle in too and some of those squeezy cordials as the hospital stuff was really claggy. Again just me but I had one of those travel pillows as the Piriton naps are lovely 😊.

Importantly get yourself a good thermometer as you’ll need to keep an eye on your temp. I had a little chart (yes I’m THAT person) and recorded other symptoms on there as well and what day they happened. They ask you at your next session and it just helped me remember.

Good luck with it xxx

[BobbiWillson in reply to Yorkiepudd]

Brilliant, thanks so much. Xx

[Cumbrianlass5]

Everybody is different but I did not find it half as bad as I had expected. It is boring sitting still for six or seven hours so take snacks, drinks and magazines, plus a small wrap. I did not feel like driving home afterwards but have a wonderful husband who did the chauffering. I was easily tired the first week after chemo but really well for the next two weeks before the next session. Still managed housework, cooking and walking every day but had to have occasional naps. But I made sure I took all the steroids and injections they gave me. Took one anti-sickness pill each morning to be on the safe side but never needed to take any more during the day. Be kind on yourself and rest if your body needs it but try to get out for a walk and some fresh air each day. Hope your experience is also not as bad as you expect. All very best wishes for successful treatment x

[BobbiWillson in reply to Cumbrianlass5]

Many thanks, I’m hoping the anticipation is greater than the event. 🤞🏻Xx

[NotThatGirl]

Lots of good advice here. A few more things to consider based on my recent experience of six 3-weekly Carbo/Taxol infusions:

1) If you are concerned about developing peripheral neuropathy (developing permanent neuropathy was a huge worry of mine), you may want to consider applying ice to your hands and feet during the Taxol infusion. I did this and only had minor tingling in my feet that would resolve before the next cycle. Obviously, I can't draw a direct causal link between icing and lack of neuropathy, but I think it's definitely worth a shot (and there is some scientific evidence to support this). I actually bought the icing gloves and socks, but ended up preferring to just hold bags of ice in my hands and setting my feet upon bags of ice. I also cold capped, so was very grateful my hospital offered heated blankets!

2) If you are experiencing severe leg or other pain (muscle/joint/bone), please ask your oncologist for an opioid. I had shockingly awful leg pain after my first infusion that wasn't controlled by analgesia. I ended up taking tapentadol which almost completely remedied the leg/other pain. I only needed it for 2-3 days of each cycle (typically around days 3-6).

3) Previously mentioned, but keep a symptom diary! I kept a daily symptom diary throughout and it was incredibly handy to see that each cycle was very similar for me--I quickly learnt that days 3-6 were the worst days of each cycle for pain and brain fog, and after that, my symptoms would start improving quickly. I also kept a diary of things that concerned me for each cycle, so I could discuss them with my oncologist (e.g. "weird abdo pain this cycle" or "teeth were sensitive--pain with eating cold food").

4) Honestly, as said above, infusions are just BORING. This is especially true when you're icing your hands and can't use them! I made sure my phone was loaded with audiobooks and podcasts, but nothing beats having a family member or friend to keep you company. If you can schedule some visits during your chemo, it gives you something to look forward to as well!

5) You'll get through this! When I had my first infusion in March, July seemed a looooong way away. I just had my last infusion a week ago. Chemo is doable and life goes on around your infusions! You are going to be okay. xx

[BobbiWillson in reply to NotThatGirl]

Thank you for the great information and advice. Writing a long list now for me, my husband and chemo nurse. Thank you. Xx

[Ova-whelmed]

I was lucky with side effects and didn't experience any on the day. I had a couple of audio books lined up. Although I did find that frustrating due to the napping and the relaxing,reassuring tone of Michelle Obama's voice, there still parts of her life that are a mystery to me!.I also enjoyed podcasts - fortunately is a good one. My kindle and headphones were essential to me I also took snacks its a long day.

Finally you don't want to be fiddling with zips and buttons when you need a wee when cannulated so elasticated waists or skirts for easy access.

Good Luck x

[BobbiWillson in reply to Ova-whelmed]

Really helpful, thank you. Xx

[Jacky5]

Wow...lots of great advice from the ladies already.I didn't find chemo too bad and I can't add anything extra but would echo..... laptop, headphones or books. Wrap or small throw. And be prepared for constipation which I underestimated. I would say just assume you will get it. Drink plenty of fluids and eat the things you know will help you. Have laxatives ready. For me I found taking a small dose sooner rather than later and over a period of a few days helped.

All the very best with the treatment.

Liz x

[BobbiWillson in reply to Jacky5]

Thanks so much. Xx

[MrsSkippy]

Hi,I had my 5th round of 3 weekly cycles last Thursday and like the comments, above find the actual day of treatment quite bearable but you definitely need to take stuff to keep you occupied. I’ve been doing cross-stitch, watching downloaded programmes on iPad, and listening to music.

I will admit the first session in April was quite daunting as I just didn’t know what to expect and wobbled a bit at the start of the day. However,

the day unit team were (and continue to be) totally supportive and I felt at ease very quickly.

Make sure you talk to them about any worries you have at any point during the treatment.

I find days 3-6 post chemo tend to be harder and I get help with food prep and house stuff so I can focus on resting.

Constipation has been my nemesis, and my team advised taking laxative on treatment day and the following days until the problem is resolved. My grandma will be laughing at me as I’ve taken to eating prunes!

Wishing you all the best.

Fiona

[BobbiWillson in reply to MrsSkippy]

Some old remedies are the best, thank you. Xx

[Tillymint61]

Hi there. If your there for the long haul I.e. all day. Take plenty to drink and snacks. Comfy shoes ,slippers even. I had a comfy blanket from home too. Air con can get a bit chilly so not as daft as it might sound in the middle of summer! Fully charged phone and charger and earphones. A book. Basically entertainment options! You might not use, eat or drink any of them but you'll be prepared. Try to stay well hydrated in the days leading up to treatment also after first chemo and suffering with constipation I found it helped me to try to start from an empty bowel so I would take laxatives for two days before . I took the anti sickness drugs as a matter of course and did not wait until I felt sick and pretty much avoided nausea. (That was on the advice of the chemo nurse) I had ginger biscuits on hand just in case. I also found that I felt great the 3 days immediately after treatment and first time round tried to carry on as normal only to get the wall on day 4 when the steroids wore of. I then made a point of accepting that I needed to rest up on 4 daysafter treatment (not completely but sensibly!) These are my experiences and may or may not help. Some hospitals let you going and take a look at the chemo ward before hand not sure wether this may have changed. I was very apprehensive about being around such 'sick ' people as I thought it would be, but it was a surprisingly pleasant and upbeat environment with the majority of people being very casual and despite my fears not looking that I'll. The staff amazingly wonderful and smiley. It is like every step of the way on this journey we seem to go from one stress to another but for me my coping strategy has been to look on it that nothing since diagnosis has been as bad as that was and everything that has followed has been a step along the path to recovery. Occupy yourself between now and your appointment and be your 'strongest self' xxx

[BobbiWillson in reply to Tillymint61]

Many thanks, sound advice. Xx

[rosebine]

I never had the chance to ice my hands etc, well done to hospitals that offer that. Everyone above has given brilliant advice. I was terrified my first chemo but all the nurses were brilliant and told you what was going to happen step by step, and they were all so upbeat.Most of the patients on the ward seemed quite cheerful too! I found I couldnt settle to a book so surfing the net or using a portable dvd etc player helped me. I also took my own food in after experiencing the sandwiches offered for lunch. The constipation thing is very important and quite all consuming! I was quite lucky in that I didnt get very bad reaction to chemo other than bouncing off the walls with the 3 days worth of steroids. You will be fine

[BobbiWillson in reply to rosebine]

🤞🏻🤞🏻 Thank you. Xx

[Riverflo]

My chemo pattern was one crappy week followed by two good weeks, so knowing the better weeks are coming certainly helps. I found food smells really nauseating so this time I have prepared mashed potato and carrots in the freezer. It's bland enough to be tolerable and I can avoid cooking smells and effort.

Good luck and know that it is truly worth it. xxx

[BobbiWillson in reply to Riverflo]

Many thanks.

[Ruebacelle]

Drink lots and lots of water. Eat minimally the day of no caffeine 1 day before 3 days after same for citrus ditto. Let yourself sleep and nap. Watch mindless drivel on telly. Deep breathing. Small walks. Papaya leaf tea to build platelets back up...calves liver for red count. Lean on friends family pets no time to be proud. For me with carbo every 3 weeks I could count on napping thru most of the 1st week. If you might be nauseous ask for something to take .Don't worry mostly it's just the fatigue. Good luck hugs from paris

[BobbiWillson in reply to Ruebacelle]

Great advice, many thanks. Xx

[Ruebacelle in reply to BobbiWillson]

Stay strong. Laugh. Hugs from paris

[BobbiWillson in reply to Ruebacelle]

Many, many thanks. Xx

[Rai_Nakoa]

I did 6 cycles of Carboplatin/Paclitaxol from February to June this year…. Most of the prior responses are what I experienced as well. I found as long as I took all the pre-meds the day of chemo and the 3 days after, I had no harsh side effects. I stressed horribly before the first chemo…for nothing really. The nurses keep very close watch of you, and are super amazing to answer any of your questions. I did a chart up for what meds and times to take them after as I would be so tired I was not sure if I took them or not…so would just check them off when I did take them (then my boyfriend or any family that came to check in on me would know as well). The FATIGUE was a while different kind of tired like I never experienced before… but would only be days 4-7 for me…then I would recover quickly and be almost 100% for the next 2 weeks. The biggest hurdle for me was to tackle self gratitude each day. Once I wrapped my mind around the stage 4 diagnosis, my only goal is to be super positive (I literally joke around with any medical staff to the point they just about roll on the floor with laughter). If you stay positive and try to relieve as much stress and anxiety from your life, you literally can heal your body, mind, and spirit!!

Even if you have few or no side effects from your chemo treatments, don’t stress that they are not working…be patient and trust your medical staff to support you through the treatments. On my CT scan in March, I showed NO response after my first 3 cycles of chemo (however, my CA125 count started at 13,060)…but incorporated a few alternative things starting my chemo 4-6 cycles. On my CT scan in early June, they saw NO active cancer, and deemed it as very good response to the chemo. During my debulking surgery 3 weeks ago, they saw no active cancer to remove and only ressected what they planned to.

Just do everything you can to ensure that your mind and body knows it can heal itself by enabling the chemo to work and allow your body to recover quickly!

Don’t be the calm before the storm….be the powerful storm that is going to kick some cancer butt!!!

YOU GOT THIS!

Selfie

[BobbiWillson in reply to Rai_Nakoa]

Brilliant news for your prognosis, so good to hear. Thanks too for all the tips, really valuable. Loving the selfie- the t-shirt says it all! Xx

[Rai_Nakoa in reply to BobbiWillson]

The shirt is from our local “Rumor” skateboard shop here (near Edmonton, AB). They designed it as they lost an immediate family member to Cancer several years ago. It’s awesome that all proceeds from this logo’s sales go to the Canadian Cancer society. I and all my boys have this shirt, we wore it every day I had chemo, appointments, and surgery day as well. Aside from other occasions of course (but the logo can be a bit harsh when around family events etc where there are young children, etc and some people get offended). 😉

[BobbiWillson in reply to Rai_Nakoa]

Fabulous!

[Differentforgirls]

Bless you. I understand why you’re dreading chemo. I may well be in the minority here but I actually quite enjoyed chemo day! You may think I must have a sad life if I enjoy chemo day but no, I have many friends & feel loved.

I’ll explain further - I didn’t feel poorly on chemo day ( this came a few days after for a while but doable), my nurses are smiley, bubbly, caring ….. the list goes on. I felt nothing but support & comfort from them.

I’ve had 5 cycles of taxol/carbo for frontline in 2018 & had another 6 cycles of just carbo in 2020.

There’s already been some great advice on how to prepare your mind & body - keep yourself well hydrated, comfortable clothing & take something you enjoy doing when resting. Tell yourself each chemo will be zapping that cancer. I often fell asleep during chemo especially after being given IV piriton ( to help prevent any possible allergic reaction) as it made me very dozy.

You will get through this.

Let us know how you get on.

Take care with love xxx

[BobbiWillson in reply to Differentforgirls]

Thank you so, so much. I feel so much better for coming on to this forum and feeling so much positivity. Xx