How best to support someone through chemo

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Hi,

My mum is just about to start her first chemo for anal cancer with liver mets, having just been diagnosed.

I live about 2 hrs away and have young kids - I would like to support her through chemo (her husband will also be supporting 24/7). I can stay away from my kids for a night or two at a time.

Any ideas where in the treatment cycle I would be most useful for supporting? As I understand it she has to go for treatment alone so I am thinking maybe day 2/3/4 might be helpful for me to be around?  

What is more important- hand holding through the fear of first treatment or back rubbing when she has pain/ sickness etc from the treatment on the worst days? 

Also are the effects of each dose accumulative? Thanks! 

  • Hello Hopefulone I am sorry your mum has to have treatment for anal cancer but it seems like she has a caring family around her which is great. Is your mum having radiotherapy with the chemotherapy together or having chemotherapy first?  Depending on size and if it has spread treatment varies. I had both together with the first day intravenous chemotherapy and from then on chemotherapy via tablets twice a day only taken on radiotherapy days and the last treatment on the chemotherapy taken intravenously. The radiotherapy sessions were about fifteen minutes and my treatment was six weeks. I don’t know much about those who just had the chemotherapy and some have a pic line inserted so they have their treatment this way. When I was first diagnosed it was total shock and fear of what is going to happen. The radiotherapy session if painless but you do get accumulative side effects of the skin where they have directed it. In my case you had to go into the scanner where I would lower my trousers and underwear to just above my pelvic bone so no stripping off and they would cover me with a kind of dignity towel and then it was over. Around the fourth week I had some side effects with tiredness and cystitis symptoms and going to the toilet could be a bit painful if you became constipated so would take stool softeners and not laxatives. When your mum starts her treatment the oncology team will give her a telephone number which will be available 24/7 for emergencies and advice. What is a great help is transport to and from the hospital on days she is in for treatment. Personally I didn’t need any back rubbing but just so appreciated having someone to cook and make tea and help with washing/shopping etc. As my cancer had not spread to the liver I had no further treatment but a few members here did and they will come on here and tell their stories. As I don’t know if your mum is going down the radiotherapy route it may be different for her. Please find out and get in touch. We won’t want to bombard you with information until we know. Take care

  • Hello HopefulOne

    I am so sorry to hear of your Mum's diagnosis, but you really have come to the right place - we have all been through it.

    When I was diagnosed, I also had a spot on the lung.  So the first line of treatment was six cycles of chemo over six months, Paclitaxol/Carboplatin which is standard for anal cancer with mets.   I had chemo once a week for three weeks and then a week off.  This chemo is to shrink the mets and to prevent further spread.  I tolerated this very well, apart from after the very first chemo when my liver levels were too high so they missed that week and reduced the dose by 25 percent thereafter.  On this regimen blood is tested weekly to make sure that everything in the body is working as it should do. Because I was given steroids alongside the chemo to counteract nausea (again this is standard) that evening I would be absolutely wide-awake, it wasn't unusual to find me doing housework or a pile of ironing at 2am in the morning!  The day after I would be very tired but that wore off and I would be back to normal the following day.  I did lose all my hair, but I found a seller on Etsy who made me soft cotton caps and she even made them in colours to go with my summer outfits (happy to give you details).  I tried the cold cap and lasted all of two minutes!

    I was scanned at three months and then at six months when treatment ended.  The changes and shrinkage do slow down but that is to be expected, my oncologist wasn't at all surprised by that.  I still felt fit apart from the couple of days after treatment.  I have been left with slight neuropathy in my feet - they feel as if they are on fire when I am in bed but I just stick them out from under the duvet and they soon cool down.

    I never suffered any pain or sickness in those months, in fact during chemo they would wheel round a trolley with lots of snacks and sandwiches and I always ate everything on offer!  I took a newspaper, my Sudoku book and occasionally my laptop and although I was sometimes in there for about three hours the time passed very quickly.  The nurses made what could have been a really frightening time totally bearable, they were so friendly and caring and what really surprised me was how much laughter there was on the chemo unit.

    After that I had an ablation on each lung (the other lung showed a suspicious area too) and then went on to have the standard treatment for anal cancer without mets, combined chemotherapy/radiotherapy. 

    If your Mum's husband can, it would be lovely for your Mum to have him there in the ward beside her on her first treatment, if anything to reassure her that there is very little to fear.  I was treated during the height of COVID and my husband couldn't accompany me to any of the appointments but after the the first appointment I didn't mind in the least, the anticipation was much worse.

    I think probably the most important thing (for me anyway) was the emotional support I had from my daughters and husband.  Having a Stage IV diagnosis was absolutely terrifying, and in the early days I couldn't even answer the phone if the hospital rang, I existed in this huge bubble of fear.  So with them I was able to talk about it, voice even my darkest thoughts, cry about it (in fact I had a group cry with my daughters!) and many times I could feel the tension draining away.

    She is blessed to have you looking out for her, but please don't forget to look after yourself too.  If there is anything else I can help with, just ask.  Will be thinking of her (and you).

    Irene xx

  • So glad you came on Irene as you have fare more experience of this treatment on having the chemotherapy first. It explained the process perfectly 

  • Thanks so much Jayne - your insights are so so valuable. Appreciate you sharing. We are just about to get pet scan results so will then hear exactly which chemo/ radio they’re going to start with depending on whether it has spread further. Will update. 

  • Irene thank you so much for all this information - we are waiting on PET scan results to find out how much it has spread and what treatment will therefore be but the last bit you wrote about being scared of a stage IV diagnosis and being scared of the phone ringing resonates a lot with mum and indeed all of us. 

    It’s also great to get this detail on how your treatment felt. I’m sure we’ll have more questions as time goes on. Appreciate you being here.

  • Hi there  ,

    Firstly welcome to the Macmillan online community although I’m so sorry to hear of your dear mums diagnosis.

    You’ve received a couple of great thorough replies already from both Julie & Irene so I’ll not repeat what’s already been said. Personally I had the standard treatment very much like Julie with intravenous chemo day 1 of radiotherapy & then oral chemo twice a day each day of radiotherapy thereafter, I am now 6 years post diagnosis & will be 6 years post treatment this June. I’m so pleased that Irene replied as she has experience of having chemo for her mets prior to going through the standard treatment if that’s what the plan is for your mum. A little foresight into what to expect sometimes dispels a little of the fear moving forward doesn’t it? I was really surprised when I went onto the chemo unit to have a look around prior to starting my treatment that it was a bright & cheerful space with lots of chatter going on & not the sad depressing place I was expecting, there was lots of laughter & smiles from both staff & patients. 

    I sometimes think coping with a cancer diagnosis it’s almost more difficult for the loved ones of the person diagnosed than the person themselves. It’s incredibly important that you have a good support system around you when you’ve received a cancer diagnosis which it sounds like your mum already has but it’s also important that you’re supported too. We can do that here & give you information & practical hints & tips on what helped us through treatment etc., but if you feel you need a little extra support for yourself then we also have the Family and friends forum where you can chat with others in a similar situation to yourself, if you fancy dipping into that forum also just follow the link I’ve posted & join the same as you did here. 

    I’m so pleased your mum has such a caring daughter like yourself & I hope her treatment is underway soon. We’re here to support you however we can. 

    Nicola