Pain is such a pain

Hi nannyjanet,

I nursed my daughter through chemotherapy for breast cancer, and I'm sure she had the same stuff.  She was OK whilst on the steroids, but was dreadful once she came off them. She had them for 2 days, which masked the effects. She found the only way to cope was to stay in bed for a week, but with a 18 month old child, that's why we stepped in. The second week she pottered around the house, and the third week she was OK again. She gradually got more and more tired as time went on, but the pattern of side effects stayed roughly the same. She mainly had trouble with feeling sick, even with anti sickness pills. She found nibbling ginger biscuits helped, and having lots of small snacks instead of full meals.

Make sure your team knows what you have been like. They may tweak the next dose, or give you something to help. Its worth it in the end. xxxx

Hi nannyjanet I'm so sorry to read what you went through after your chemo. I didn't have chemo so I'm sorry I can't comment. Hopefully some of the other ladies who've had chemo will be along to compare notes.

Why not give the Macmillan Support helpline a ring and speak to a nurse, freephone number's shown below.

I really hope the pain eases off once the painkillers kick in. My husband's in permanent pain due to waiting for a hip replacement and I have to say He's hell to live with at the moment!

Sending you hugs, Barb xx

Hi nannyjanet, I have just finished 6 sessions of the same Chemotherapy that you are on. After the first session I ended up in Hospital for a week after a stomach bleed because of being sick. Then after the second session I was in Hospital again because my blood pressure dropped too low. So because of these two reactions i only started feeling the abdominal pain and bone pains after my third session I had codeine ( prescribed after my first hospital stay) and paracetamol for a few days which helped a lot. When I told my GP about this she gave me a prescription for codeine so that I would be prepared for after my next session. The pain usually started 2-3 days after the Chemo and then lasted for about 3 - 4 days. I usually found that it took till about day 10 for me to feel ok. Hope this helps 

Hi all it's now Sunday 12th sept. thankfully the stomach pain has eased considerably but my legs and ankles in particular are agony,  when i rang the help line i told them i had codeine but they told me to stick with paracetamol and ibuprofen or go to a walk in for a prescription.for something stronger  but i didn't go in the end i tried the hot water bottles on my ankles `` lol... it did help a little. I did manage a better sleep.so here i am Sunday 12th, .. day 4 post chemo and feeling very sorry for myself, my partner suggested a trip to  A=E  but as blood pressure and temperature are ok i don't see the point , so more paracetamol and hot water bottles for me today i am trying to avoid the ibuprofen as i don't want to upset my stomach anymore than necessary.it has eased no doubt about it but the thought of facing this leg and foot pain after each session is a little daunting. i will report my side effects and hope the meds can be tweaked a little.......i'm so glad i'v not had the sickness too as that would have taken to my bed..

Hi nannyjanet,

Glad to hear you are slightly better. Be wary of taking codeine. That made my husband very constipated, and you can do without that. xxx 

i agree about the codeine but was desperate...iv since been given gabapentin for the neuropathy but don't think it agrees with me i ended up totally spaced out unable to function for hours....don't really want to take it but so scared of the pain... i am hoping they will reduce the strength of next chemo or i'm seriously thinking of refusing it.. i am planning to try to arrange appointment to discuss it further. today Tuesday DAY 6 post chemo the constipation is replaced by horrendous diarrhoea but now looks like it may have blood in in it may be just what food i have eaten as its very watery but im not sure so think i will mention it just in case, better be wrong than ignore it at my peril ...

Hi Nannyjanet,

Is there a number to ring if you are having problems? I'm sure my daughter rang them. I'll put my money on the chemo upsetting you. xxxxxx 

Hi NannyAnny

I have the 24hr help line which i have rang when my own hospital ward was closed, it was helpful . then on Monday morning i got in touch with the nurses looking after me on the chemo day ward. after loads of questions it was diagnosed as PERIFFERAL  NEUROPATHY  ...nerve pain.. caused by the chemo, they are going to request a reduction in the dose of my next round.. i was prescribed Gabapentin, but it doesn.t agree with me at all so i only take 1 at night to help with pain, but if i take more in the day i feel like im in a stupor and can't function.....Im really dreading the next round of chemo..its now day 9 post chemo and still having problems..

Hi nannyjanet,

Sorry to hear your problems. After seeing my daughter coping with chemo, I am not surprised, and if they drop your dose next time it might be better. I don't think they will give you another dose if you are not fit enough. I know my daughter had one round delayed because she had a cold and she religiously took her temperature each day.

Just think - if it makes you feel so rough, what chance has the cancer got? xxxxx

Hi nannyjanet Good to hear the 24 helpline was helpful but sorry to hear you're still going through pain and being spaced out - I don't know which is the worst, hope the reduced dosage next round is better for you.

Found some reading matter on Peripheral Neuropathy on Macmillan info and support, might be useful so you can jot down a few questions you might have before your next round.

Big hugs, Barb xx