Bowel cancer diagnosis

Hi Sammiej,

I had Folfox and it was fine. The district nurse would come to disconnect the pump and flush the line. The nurses on the unit were lovely so don't worry if you're feeling a bit overwhelmed or tearful. They'll give you a phone number to call for any emergencies. It can be used to check for something you're not sure of so don't be put off from calling. I had to have my sickness meds changed as the nausea was awful but just took a bit of tweaking. I used to tell myself that if it was making me feel like crap, imagine what it must be doing to any cells that were left. It wasn't too bad, all very doable. Last part of your journey and you'll be fine! 

P.s. Use warm water when you're brushing your teeth cos cold water hurts.

Cheryl x

Hi Sammiej,

What a stressful and scary time you’ve had! Glad to hear the operation went well and you seem to have recovered well from it. It’s a very emotional time for our families and for us who are going through this and you will have been hit harder with it all happening so quickly.

I too had Folfox + 46 hour pump – mine was also for ‘mop-up’ (1 lymph node infected out of 12). 6 cycles were planned but only 5 completed as the oncologist recommended we do away with last one due to the effect it was having on my bowel operation site. However, that apart, the other side effects weren’t anything like as bad as I’d expected.

I had a PICC line fitted. Bloods were taken 2 days before the chemotherapy to ensure I was OK for treatment. The chemotherapy infusion was at the day clinic (I was there for around 3-4 hours) then the pump was attached with a bum bag to hold it and off I went home. I had to go back to the hospital 2 days later for the district nurse to remove the pump and flush the line, but some people have the district nurse visit at home to do this.

You’ll be given a phone number to contact if you’re not sure about anything, the chemotherapy nurses are wonderful and nothing seems too much trouble for them.

Some tips in case you’re affected:

I was started at full dose but it was reduced after 1st cycle to as neutrophils weren’t recovering fast enough even though was having Filgrastim injections to boost them.

As others have mentioned, cold can be a problem especially the first week. I had a pair of silk glove liners to wear in the house and outside (spring/summer) if needed and a pair of much thicker gloves for just after the infusion, along with a snood and hat. I also kept the thicker gloves next to the fridge.

My husband put socks on the metal door handles I’d be touching, towels over the floor tiles in the bathrooms and I kept a flask of warm water next to the sink at night to wash my hands as the hot water takes so long to get to the taps. I wore a pair of sheepskin slipper boots during the day all the time at home & even wore them when I had the infusion. I also kept a flask of warm water next to the bed at night as the first sip of even room temperature drinks affected my jaw for first day or so.

I kept a diary during treatment and found that the 3rd to 6th day after infusion (day 1 to 4th day after pump removed) to be the worst. Just feeling generally unwell and didn’t feel like eating although if food was put in front of me, I could eat and even enjoy it. It also made me very tired and weary, so I learned to rest/sleep as much as possible the first week and I’d be pretty much recovered by 2nd week. I was also given (Pyridoxine) B6 tablets to take and I also took Omega 3 supplements and massaged my hands and feet and used copious amount of moisturiser on them; I haven’t really had any peripheral neuropathy (thank goodness) but whether this is down to tablets and massage helping or not I don’t know. I think I’ve been lucky in not having too many bad side effects and what I have had have been easily manageable. I’ve also been lucky with only a few periods feeling slightly nauseous. I’m now 6 weeks past my last chemo and starting to feel like myself again, I had my CT scan last week and now waiting for results.

It sounds like you have great family support at home and with what you’ve come through so far, I’m sure you’ll cope well with the chemotherapy.

Let us know how you’re getting on.
Take Care.

Net77 x

Hi Chalet thank you for the reply , I have heard alot about getting a cold sensation I will definitely follow the advice . My biggest problem with starting chemo is I feel good (Barr some anxiety ) after my operation and hate the thoughts of been laid up again for 6 mths with chemo/side effects . Xx

Hi Net77 thank you so much for the great response even tho it all sounds daunting and Alien to me I am sure I will recognize some signs when I get started .it is such a scary time but we are all keeping positive and yes I have healed well and fast from what they have thrown at me so far .thank God. 

Wishing you all the best for your results x

I know how you're feeling. I felt like it was a lot at first but the strength you have will come back and make it better and stay positive. That has been my biggest thing to just try to keep positive about not just the big C, surgery, temporary stoma bag and chemo but everything else around as well as much as possible and I've felt it helped. Even though it has been very hard sometimes of course, because we all have bad days.

I have a now 11 month old cocker spaniel puppy who is just a massive bundle of joy constantly and my partner (normally a grumpy Mancunian but now also trying to be positive and upbeat) that really helps. My family is back in Sweden which has been a bit sad at times, mostly because I know how hard it is on them not being able to see me but I keep on saying to them that we will be hugging again really soon. So having your hubby and children supporting you and staying positive is amazing. Make sure you talk about them about the bad days and so on too, they will be great in supporting. 

I don't think you need to worry about being in pain at all, I do have trouble falling asleep the first couple of days because of the steroids but it gets better and you do find what works. (it was a big shock for me because I normally live on coffee and the stronger the better all through the day and evening so something actually keeping me up was a new thing haha). 

I have experienced quite a bit of hair thinning but when I've been looking around it seems like it is quite rare. I do have a thick set of hair so I'm guessing it's very noticeable for me who's never really had to worry about burning my scalp in the sun as it can't be seen under all the hair normally but it will grow back when it's all done anyway and it's not too bad so far. My partner keeps on saying that I'm lucky as mine will grow back, his won't (bald, grumpy Manc). 

But as others have mentioned I do keep notes of every little thing and talk with my doctor and nurses about it everytime I go in as a lot of it is fixable with changing dosage or tablets. One of the tablets I got for nausea did send me to A&E with a lip that looked like I've been stung by a bee but they found another one to replace it with that worked a lot better for me as well. It was an adventure though as I've never been to A&E in the UK before so that is of the old bucket list, plus some women pay good money for those lips 

Hope you are having a lovely weekend and the weather is better than in East London, it was so humid last night I ended up with a migraine for a little while. Oh well. 

All the best, 

xx Em

Hi Em thanks again for answering me. I honestly know I will be ok but at the minute I just think as my start date is approaching I am scared and hoping I am doing the right thing as going from feeling ok to God knows what is very scary and I really do appreciate all the fed back and do count myself lucky that my tumour was caught In time and chemo is only recommended as a clean up I am terrified .

Did you suffer mouth ulcers.  Did you suffer from cold pressure and need gloves and scarves to function or numbness etc 

I was told I wont lose my hair but might thin . Do you lose your eyebrows /eyelashes I am wondering 

Sorry to be so morbid but all these side effects are horrifying. 

I would love to hear how someone copes from waking up to going to bed at night  day to day  while on chemo 

I am sorry to hear you have not your family around you while going through this but thankful you have your hubby and dog xx

Hi Sammiej, 

I have been spared from mouth ulcers but been very strict with brushing my teeth after each meal with a soft toothbrush and using alcohol free mouthwash (I don't know why it should be alcohol free but). 

Cold sensitivity yes but you learn quite quickly how to deal with it. I've started to drink a lot of tea as I don't ever have to worry about that being slightly too cold :) But it only lasts around 7-9 days for me so I have a few days to enjoy cold drinks and ice cream too :) 

My eyebrows and eyelashes are still intact - so I wouldn't worry to much about that. 

No worries at all, all questions are good to get answers too. I can try to type down my day to day during chemo tomorrow (my boyfriend keeps on telling me to get breakfast right now) and then we're having a day of fun before the football tonight so don't want to promise to be able to do it today :) 

All the best, 

Em x 

Good morning thanks again for taking time out to reply . You are been so helpful you sound like a lovely person x

Enjoy your  breakfast and enjoy the match later  xx

Hi Sammiej,

I was very scared about the chemotherapy too (if you click on my user name you can see how concerned I was about some of the side effects, I even wrote to the oncologist about how concerned I was about peripheral neuropathy). However, I decided that if I didn’t have the chemo and the cancer returned then I would regret not trying the chemotherapy. You can always stop it if you find you’re unable to cope.

The doctors have to tell you about all the possible side effects and at the time it does make you question going ahead with it and I was very tearful before starting on it. However, everyone reacts differently to the chemo and I think it’s unlikely you will suffer from all the side effects, (hopefully someone with better knowledge can confirm that). I can honestly say my side effects were very manageable. I am retired so didn’t have to worry about working during it or what time I got up in the morning and I could sleep and rest as much as I needed to do. I am very lucky my husband does most of the cooking normally so I didn’t need to worry about that and he took on most of the housework too.

On a day to day basis I felt like this:

Day 1 – Infusion and pump fitted – no sickness, felt almost normal but felt slightly zoned out. Sneezed quite a lot and runny nose. From late afternoon when take first mouthful of any liquid (room temp or above) tongue feels weird (if you’ve read the Harry Potter the best description I can come up with is it feels like I’ve drunk Polyjuice potion). Not an unpleasant sensation but weird – it lasts about 1 minute.
Day 2 – Pump in situ – as above except Polyjuice sensation from when I first drink anything (still only lasts about 1 minute)
Day 3 – Pump in situ for part of day, disconnected usually early pm. Felt as above.
Day 4 – Starting to feel quite tired during day and starting to go off the thought of food, but can eat when food is actually put in front of me, a lot doesn’t have much taste. The steroids start to take effect and kept me awake at night even though I’m tired (continues for 2/3 nights). Learnt to just rest even if didn’t sleep much and my oncologist let me reduce steroids by 50% as I didn’t suffer from sickness and this helped with sleeping at night. (NB: Also take the steroids you’re prescribed before 13:00).
Day 5 – As day 4 plus very slight oozing of blood from inner nostrils (continues for a few days, no pain and not enough to drip)
Day 6 – As above, some cycles I had a rash in mouth (not painful) sometimes my throat was a little sore, sometimes my tongue was tender and sometimes my neck glands were slightly swollen. Lasted between a day & 3 days. I ddin’t get mouth ulcers and I didn’t need to change to a soft toothbrush, my gums stayed in good condition throughout.
Day 7 – Starting to feel much better and can actually think about food, but still not much energy.
Day 8 – Feeling fairly ‘normal again’, but not much energy.
Day 9 – As Day 8
Day 10 –As day 8
Day 11 – As day 8
Day 12 – As day 8
Day 13 – Usually felt quite good
Day 14 – Usually felt quite good
Next cycle starts

• The side effects tend to be cumulative and I found the tiredness and weakness got worse as the cycles progressed, but manageable. Around the 4th day was the worst for weakness and couldn’t shower without sitting down.
• I felt pretty much zoned out from the 3/4th day to 6th day on most cycles.
• Suffered from chemo brain from around 3rd cycle to end (couldn’t think straight and forgot things easily). I seem to be improving now and feel like my brain and memory are functioning much better.
• From the 3rd cycle (mid April, so not that warm outside) I occasionally had a throat spasm with first drink of the day this lasted for only the first 2/3 days.
• I wore my thin gloves if I went outside to protect against any cold sensitivity, but didn't suffer very much from this.
• I usually had a sleep or at least a lie down in the afternoons for a couple of hours from Day 2/3 to Day 7.
• Sometimes I didn’t get up in the morning until after 10:00 and was usually in bed by just after 21:00. I could have slept for Britain.
• I tried to have a walk most days or at least spend time in the garden pottering
• When the weather permitted, I spent time outside lying in the shade even if I had fleeces and throws over me – I felt much better for being outside.
• I was told I wouldn’t lose my hair but it would thin and eyebrows and eyelashes could suffer too. My hair has thinned quite a bit on the top and at the front (but I have very fine hair and not a lot of it normally) but I haven’t noticed my eyebrows and lashes thinning. The hair thinning started around the fourth cycle and still continues (now 6 weeks after last (5th cycle)), but it will grow back.

Hope this helps.

Take Care.

Net77xx

Thanks so much for the very detailed reply it has given me alot of insight going forward and I really appreciate it . You are so ki d to take time out to do this x

Where are you in your journey as of now x

I am 55 have a wonderful hubby who also does most of the cooking and has been so positive since day one about my diagnosis, I also am blessed with 5 great kids 4 girls and 1 boy ages from 34 - 15 and a gorgeous granddaughter they have been amazing through out also ..

Can I ask what do I bring on my 1st day to chemo or is it just show up