How can I help my mom through rad/chemo?

[Worried daughter]

My mom is 69 yrs old, dx with colon cancer T4 N2 on 02/15/07, had surgery on 03/13/07, and is getting ready for radiation therapy/Xeloda followed by 9 cycles of Oxypolatin/FOLFOX.

What recommendations do you have for me so that I can help my mom? Should I be present during her radiation therapy and chemotherapy? Or would my presence be more of a burden? Thanks for any suggestions!

[LA8]

Hi, WD. First of all, try not to worry too much. Ma is probably more worried about you than about herself. Please tell her from me that I went through the Radio/Xeloda treatment with very few problems. Many people do, and there's a good chance she will be lucky in that respect. Hopefully the treatment room will be a pleasant place, and the staff are comforting. The people in the waiting room are all in the same boat as Ma, and there is usually some good banter going back and forth. It doesn't have to be an unpleasant experience. It wouldn't hurt for you to go along just to keep her company. I hope the treatment goes well (for both of you).

[Loopy369]

Hi, sorry to hear about your mum's diagnosis. I had 25 chemoradio sessions over 5 weeks (with the continuous 5FU starting two weeks prior). My main symptoms for the first three weeks were just incredible tiredness. I personally didn't want to be driven and drove myself all but once a week (to let my mum feel she was helping mostly) but I would say the offer at least of a chauffeur and company in the waiting room would be a first step - you won't be allowed in the treatment room with her, no-one is allowed in the room but the patient for radio.

I'm afraid I wasn't so lucky with side effects and got bleeding cystitis quite early on - no infection, just shrinking tubes. Your mum needs to drink plenty of water before she has each treatment to protect her bladder from inflammation (I forgot once and that did me in). I started drinking barley water straight away and the pain got better within a day.

In the last two weeks my haemorrhoids became very inflamed and painful. My tumour is camping out in my rectum so the beams were directed quite low which your mum's may not be. Basically at the first twinge of pain ASK FOR HELP. Mine got worse over Easter so I was without relief for four days and it was a very long four days. However the meds they gave me - suppositories with steroids to reduce inflammation and local anaesthetic pain killers worked, again within 24 hours. The colifoam didn't do a thing.

Any hair in the radiated area will most likely fall out, mine has!

I used aqueous cream daily before and after treatment to keep the skin from drying out - apart from some sore broken skin where the sun doesn't shine (hydrogel prescribed, worked a treat) my skin has remained fine.

I finished treatment on 11th April, now waiting for surgery date and follow up chemo and feel really rather good!!

I can tell my mum things - she's worked in a medical centre for 28 years, but your mum may not find it easy to talk to you. If you can print this off and show it to her and please tell her to ask for meds at the first sign of pain and she should never suffer. They don't give out medals to those who put up with pain and it doesn't do your morale any good either!

I'd suggest practical help with housework, cooking, ironing etc, gardening while she's having treatment would be the best help as I didn't have the energy to even think about these things, let alone do them. Just say "I'm going to do X today" instead of asking what she'd like to be done - it was too much for me to choose which of the many things I'd like done first and I can never ASK for help.

Of course hopefully your mum will be lucky like LA8 and sail through (lucky git - nice to see you back from your travels).

Best of luck and good wishes.

Lisa

[sean]

I'm 4 1/2 cycles into FOLFOX and the one thing I think I can safely say about chemo is that it is best taken one day and one week at a time. So far no one week has been a good indicator of how any other week will go. Fatigue and side effects have been completely unpredictable.

I can say that chemo has not been physically terrible. It has been unpleasant at times and definitely annoying, but so far nothing really awful. Some people get really hit hard by chemo and some people sail through it. For my wife & I the unpredictable nature of chemo that has introduced more stress than the physical effects. We have 2 kids and it is difficult to plan anything more than 2 weeks out. The first weekend of a cycle has been a complete crap shoot.

I've never done radiation but I understand that it can be extremely tiring. I've found that a good nights rest or a good nap seems to make all the difference in how I feel. Sleep medications have been a big help for me.

I think the best advice I could give you is that you should try to keep your schedule flexible so you can help when your mother needs it. Realize that not only is her general reaction to treatment unpredictable, but that her daily and even hourly needs may be unpredictable too. Chemo just doesn't like to conform to plans.

Best of luck to both of you.