A question about chemotherapy (and distracting the patient from it) ...

[Snowstorm]

My mother's having a masectomy on Monday and will have chemotherapy thereafter.

This is all very sudden and new to us and I know nothing about chemotherapy and the practical applications of it (exactly what's involved and how long it takes etc.) but wondered whether there was anything I could get her to listen to/distract her during the chemo sessions or whether that's a rubbish idea as she won't be able to/won't feel like doing anything.

Specifically I was thinking of sudoku books (ordinarily she loves sudoku)and perhaps some "Yes Minister/Prime Minister" tapes/CD's for her to listen to.

For anyone who knows, are these reastic/good presents or have I been watching too many films?!

TIA

It is hard, since chemo patients often feel very sick/ tired and it is hard to concentrate.

Music helps dh. He is now so sensitised to the who thing that simply being in the hospital, actually just driving him to the hospital makes him feel violenty sick.

Take lots of books, magazines, Iopd or the like, sandwitches etc as long waits are the norm.

Dh waited 5 hours before getting into the treatment suite last week.

If she starts to get anxious/ sick at the simple thought of the treatment, as the doctor for some short acting tranquilisers

Thanks martianbishop. I'm really sorry that you are in the position to know this, but I do very much appreciate hearing from you. My mother takes around 3 days to recover from a general anaesthetic ... so my siblings and I are all a bit nervous as to how the chemo's going to affect her, before, during and afterwards. I was hoping to be able to give her something that she might believe might be able to help ... if that makes any sense at all!

5 hours to get into the treatment suite ... that must have been absolutely dreadful for your DH ... talk about pro-longing the agony.

Thanks for replying to my message and best wishes to you both.

Snowstorm

Hi Snowstorm,

First a disclaimer. Chemo is different for everyone. There are two main variables - the type of chemo you are on and how your body reacts to it.

Having said that, here's my experience.

I am given anti-nausea drugs prior to the chemo infusion so I haven't tended to feel to bad at the time. Somewhat fuzzy round the edges, if you know what I mean, but quite capable of listening to music or reading while the treatment is going on.

The two or three days following the treatment are the worst. With my original chemo drug, taxotere, I would feel as if I had the world's worst hangover - nausea, dry mouth, tiredness, headache. The effects gradually tailed off over the week but as the drug affected my immune system I would feel very tired and achey. This passed after about a week to ten days.

Best advice for the post-chemo period - rest, drink lots of water, try and eat as well as possible and concentrate on eating stuff that will help your immune system recover.

Hope this helps.

MM

MM - we're novices at this so it all helps - thank you so much for your message.

I hope that you get well/stay well very soon.

Best wishes,

Snowstorm

I went with my mum the other week for the day and we just chit chatted about stuff, fkicked through magazines and she dozed for a while. I guess it depends on the patent. I have to say my mum is AMAZING. I haven't actually discussed this on mn yet but 3 months ago I found out my mum had incurable cancer. Now that is not to say she is dying now, but eventually it will kill her as it is not operable and they can only offer care/treatment to contain the cancer, no treat it. SO perhaps itis not as agressive as some tratments.

She has lost weight and we are constantly nagging her to eat more and to eat high fat foods. SH e does feel tired and lacking in energy, but she is not like a patient. For her the best bit was when she put on her wig for the first time and had complments about the new hairstyle, she nearly cried. TBH with it on you woud harkly know.

Sorry, off the OP.

If she likes music/headphones then an ipod with the latest relaxing music she likes, suduko is hard as it requires concentration that mum doen't have (she is a whizz normally) glossy mags that she can flick through just about do the trick as they need no concentration and effort.
Good luck

Hi, this is my first post here, so we haven't talked before, but I'm sorry you're having to support your mum in this way.

Over the last 5 years, I've undergone a lot of chemotherapy and there is one thing that I would add to the very good advice you've had from others. Please don't be offended if your mum wants to do this by herself sometimes.

As often as possible, I went by myself, plugged myself in to my ipod and a book and got on with it. Having my mum or my husband there just made me feel obliged to make conversation or monitor their anxiety levels and I really felt under pressure.

Everyone is different, but you do need to prepare yourself for it if your mum needs to tell you to stay at home. I felt really bad telling my family I wanted to go it alone, but it was best for everyone in the end and I got through the (sometimes 12 hour) sessions far better that way.

The other thing is waiting around. Whatever timings you are given, double - no - triple them. It takes a vast amount of patience to be a patient. And I have very little, so I know how hard the waiting is. Try and be aware that it'll happen and it never really seems to be anyone's fault.

Hope you don't mind me leaping in a posting, but I thought it looked like a subject I could help with!

Jukes no problem, That wa sthe first time I went with her, it was her third day long session. Due to work commitments I cannot go very often, so far I have managed that and wig shopping!!

I totally get why my mum would want to go it alone, that would be her normal way of doing things, but as much as anything I went to relive my dad IYKWIM. He is the one who needs support here

Snowstorm, I am so very sorry to hear about your mums illness. It must be a very scary and difficult time.
I don't have any personal experience with cancer, as such, but I used to work , as a Nurse, in Oncology for a few years and supported many people through the difficulties of chemo and radio therapy.
Like others have mentioned, there just is no way of knowing how the chemo will affect your mum and of course, every individuel has very different ways of dealing with it all.
Be there for your mum when she needs you, but also make sure, that she knows you won't be offended if she would rather go alone, etc...!
Last week I read a very interesting Book, that I had only picked up completely by co incidence, it's called "The choice" and is written by Bernadette Bohan, the author went twice through cancer, incidently the 2. time she had Breastcancer.
She describes her emotions really well and also describes some proactive measures she took, alongside doing her lumpectomy (in her case there wasn't a need for a mastectomy) and her chemo and radio therapy.
Wishing you and your mum all the best!

Thanks for all your messages everyone, I appreciate hearing all your thoughts and points of view - it all helps.

I live in London and my parents live in Dorset, so it will be my father who accompanies her to hospital and stays with her or drops her off there and I know my mother will very comfortably tell him should she wish to go alone and that he will understand. What some of you have said, about needing to listen to what she wants and when she needs to be left alone, is worth being told though, so I'll keep that in mind.

She's in hospital now and her operation to remove her breast and remaining lymph nodes is at 8.30am tomorrow. Our fingers are all very tightly crossed that that's it and that the cancer has not spread anywhere else in her body. That's a scary thought, and it truly terrifies me should I dwell on it, even though I know that even if that is the case then there's nothing we can do about it but to be as supportive as we can and to get on with it so to speak.

Anyway, thanks again for your messages.

Snowstorm

Snowstorm, my thoughts are with you and your family. I have been where you are with my Mum, my aunt(Mum's sister) and now my MIL.
All I can say is everyone is different but many people don't get bad side effects with chemo-get her through surgery first and then take each day as it comes.
It will be hard for you not being very close to her.

Snowstorm....I wish your mum all the best for her surgery tomorrow, and that indeed the cancer has not spread.
It must be very nerve wracking for you all!

It may be worth asking if, rather than infusion chemo, she can have oral.

I had colon cancer 3 years ago and was treated privately. The specialist put me on oral chemo which consisted of about 8 tablets a day for 2 weeks, then one week off so I never had to go to the hospital for treatment.

The drug I had was Capecitibine which was developed originally for breast cancer, then found useful in colon cancer as well.

The NHS may not pay for it, and it is quite expensive, but in my case it meant I could carry on with normal life (I only had one day off work in 6 months of chemo).

thinking of you and your family whilst you are going throu all of this. do let us know how the op goes.
Crunchie sorry to hear about your mum.

Snowstorm, how is your mum doing?

My mum had a mastectomy and lymph node clearance this morning. I'm going to visit tomorrow but my dad says she's pretty cheery and the surgeons are pleased with the way the op went.

I hope your mum's recovery has gone well. Has she started any other treatment yet?

Thanks for this thread. Was searching rather randomly for "lymph nodes" as we weren't expecting them to remove them all and I'm not sure how that will affect her in the future re swelling etc. She's starting physio as early as tomorrow apparently - did your mum have this and was it ok?

spookthief, I had lumpectomy + lymph node removal a few years back. Swelling was a bit of a problem some of the time, but the numbness is weirder (because they have to cut through the nerves to get to the lymph nodes, the whole upper under-arm area is numb all the time)

I have a friend who had the same and I think her oedema was worse than mine to begin with - she used to wear one of those stretchy support bandage things.

I didn't have physio as such, but did some of the illustrated exercises and also regular daily movements (things like hairbrushing) helped me.

snowstorm, hope your mum is doing OK.

and mb, love, at least you know now that DH won't have to suffer through chemo much longer (but I do wish there was something to keep him with you )