How can I support my Mum with breast cancer?

[gh355]

Hi all,

My name is Gina and I'm 23 years old. My Mum has just been diagnosed with HER2+ breast cancer in her right breast, and spread to the lymph nodes. She's going to be treated with chemo, a mastectomy and herceptin.

At the moment, I'm finding it really difficult to know how to support her. Are there any parents on here that have experienced having cancer - and could you let me know what I could do for my mum that might help? Or what your children do/have done for you? Obviously at this stage I'm just trying to provide as much emotional support as I can but as we move into treatment, I'd also like to ask about how I can help her prepare for chemo (both emotionally and practically). Any advice is much appreciated, I'm trying my hardest but feel like a fish out of water.

Thank you x

[Lainey66]

Hi GH355

You are an extremely thoughtful and caring daughter. I'm a Mum with rjeee children 23, 18,17. Basically just be there for her. Be prepared for highs and lows emotionally with the odd breakdown. Be positive but not pushy. People tend to think that when a person is looking ok they can do a lot, not the case. Your Mum feel feel a lot of lethargy and possibly some nausea with the chemo - however the anti nausea tabs worked well for me. I have a blog that you are welcome to look at that has catalogued my journey to date you may find something helpful in it. Start at the link for 2015 and it goes chronologically through my journey. elainemurphy66.blogspot.com make sure your Mum listens to her body to rest when she is tired and to do any activities when she has the strength. Pass on my love and luck to your Mum, also to you and your family who are also going through this. Local cancer support centres are fantastic too I would investigate your nearest centre. Positive vibes being sent your way.

Lainey ❤️

[gh355 in reply to Lainey66]

Hi Lainey

Thanks so much for your response, I already feel better for having been able to write this post. Is there anything you did to prepare yourself/ could you suggest anything, for chemo and losing your hair that you helped you to deal with it on an emotional and practical basis?

Best of luck and love for your continuing recovery.

G x

[Dmhaynes in reply to gh355]

Hi you are being a fantastic daughter! My daughters were only 7 & 15 when I was diagnosed but I involved them at every stage and that's what helped me. My elder daughter came with me to get my wig (which I never wore) and when my hair started to fall out they shaved it off for me and kept a lock each.

I'm not one for a lot of fuss but knowing I had people there in the background just quietly looking out for me was a tremendous help.

Good luck and I wish you and your mum well xx

[Lainey66 in reply to gh355]

Hi G. What I did was keep a note book that I wrote all questions that came into my head in. This helped me to remember what I wanted to ask the oncology team, surgical and radiotherapy teams. When it came to my hair loss, I had made the decision that I was not bothering with a wig. I normally feel the heat a lot so even the thought of wearing a wig made me uncomfortable. I basically embraced the fact that I would be bald. Approx 7 days after my first chemo my hair fell out. It came out remarkably fast and mostly in one go, so I called my daughters friend who is my hairdresser, and she called round and shaved off what hair remained - I didn't want that wispy 'blown dandelion' look. In the cooler months I wore small beanie type cotton caps that I could decorate with lovely scarves. There are great tutorials on you tube on how to tie the scarfs In different and attractive ways. I actually found the experience of going bald quite liberating in a strange sort of way. When having chemo your Mum will find that her taste buds will probably alter - a lot - food, even your favourite foods become either bland and mere textures, what did help slightly, before a meal chew two chunks of pineapple (tinned in syrup as opposed to juice as the pineapple in juice could possibly hurt your Mum if she developed mouth ulcers from the chemo) the pineapple opens the tasted buds a little making eating slightly better. (I still can't enjoy bananas🙄) Between chemos I planned treats for myself, something to look forward to when I had energy. They ranged from simple things like a new book or top, to lunches out with friends, visits to and from my family, trips to places of interest (I love museums and galleries) I also took up hobbies. One example was crochet - I have always wanted to crochet so when I was too weak to venture out, but strong enough to concentrate, I, once again, referred to YouTube and taught myself how to crochet. I took up painting and read a lot. I found I had to keep my mind busy as I found I could over think things an depress myself. Night were my lonely time, I wanted, so badly, not to worry my husband and children that I didn't want to cry in front of them. I felt that they had enough to worry about without me giving them more concerns. I would come downstairs in the night and have a good cry - which I think you do need to do to 'get rid' of the negativity so to speak. I would then put on a movie or read until I fell asleep. Throughout Chemo, I did sleep a lot. This is also a good thing as your body is repairing so much when you are asleep. I hope that what I have given you helps, it is not an easy road but with the help and tips from everyone on here it may aid in making this journey a little easier. Take care and sending all my love. Lainey xx

[lizzyHZ]

Dear Gina

I am so very sorry to hear aboutyour mum i wish here the very best in here treatment and recovery

My sons are 22 and 24 and i was diagnosed last year

My youngest son came to the hospital with me for my diagnosis my eldest could deal with ilessss well

I allowed my sons to cry and get their emotions out and not be strong for fear of upsetting me

I explained everything to them there werelots of hugs

Does your mum have a partner? I am lucky to have one and he took over the lions share of caring for me to allow the boys to get on with their lives,this is my illness not theirs and they helped me as and when i needed it

There was so much positivity in the house and still we decided not to be negative

They also had friends they couldtalk to for support remember loved ones need help through this journey too

If needed be there as a second pair of ears your mum will get so much information, write down questions and speak to the oncologist there are no stupid questions just stupid answers

Be there for your mum when you need to bbe a listening ear, a warm hug and and tea (or gin & tonic) maker when necessary

The best of luck for you both and your family you are a sweetheart for reaching out

LIZ X

[gh355 in reply to lizzyHZ]

Hi Liz,

Thank you so much for your response and kind words. My family are very fortunate in that there are a lot of us! My Dad will be the primary carer for my Mum and I also have 4 siblings that I'm sure will be on hand. I'm the only girl so feel like I've got the closest connection/understanding with my Mum on the physical aspects of her treatment - losing a breast and losing her hair. Diagnosis was about 2 weeks ago and I'm just trying to talk through the anxiety my Mum feels about the journey ahead of her. If you have any tips about how you coped when you first found out, and what I could do to make my Mum feel calmer, do let me know.

Best of love and luck for your treatment and recovery.

G x

[lizzyHZ in reply to gh355]

Dear Gina

Lucky mum for having so much love around her.

My emotions went from disbelief as neither me now the the experts could feel any lump to anger frustration and acceptance

Also absolute relief to the fact that i reacted to a letter saying there was a screening bus in the villagewhy i turned up to this day i will never know but i am so thankful i did ..it could have been so much worse, once you have your diagnosis and you know what's ahead you you can move forward

For me one of the worst things was telling those i love and my close friends

As my son said be selfish for the first time in your life, this is about you not them but because i live in the Netherlands and my family is in the UK it made it difficult

Then i got all enthusiastic wanting to get on with my treatment get over it and get on with the rest of my life

I have been a single mum for many years and have dealt with many hardships personal suffering etc.. so this is another life chapter i am a fighter and i will deal with it

My surgery was 15/092016 i was finished with radiotherapy by mid November luckily no chemo and no major side effects to tamoxifen

My life is now just as it was beforehand except that my partner moved in and we have a new puppy ..life is good there is so much positivity around and love

There is light at the end of the tunnel and even in our darkest days please make sure your mum knows this...

Xx

[Jennymary]

Sending love and hugs to you, your mum and your family and friends, I've got no partner or children but i can only endorse what others have said be there for your mum, let her laugh or cry when she wants to, it's her cancer, no one elses, also when you feel in need of support phone MacMillan or one of the other fantastic support services as they're available to offer support to friends and family xxxxxx

[gh355 in reply to Jennymary]

Thanks Jenny, sound advice. Best of luck and love for your recovery.

G x

[Linkj]

Hi Gina, i am probably about your mother's age with Her 2 +ve and had a mastectomy 4 weeks ago. I am seeing the oncologist on Tuesday and due to start chemotherapy followed may radiotherapy. The journey is not easy but so far the hardest part has been the diagnosis up to surgery. I am not an anxious person but we were all so scared and stressed and although ups and downs nothing has been so bad since (I haven't had my chemo yet!). I have 3 adult boys and telling them was the hardest but they have been loving and supportive which helps but the bulk of it all has fallen on my husband, I watched and suggested my family watch Victoria Derbyshire's blog and we all thought it was great, took away some of the unknown. There is no perfect way to support and bless you what is right one day could be completely wrong the next but just keep being patient, loving and supportive. Outcomes are excellent just a tough year. X

[anne-57]

Hi, great advice already so I will just add two thoughts. First, try to keep things as normal as possible. There is something reassuring in familiar routine. Secondly, encourage her to ask for help when she needs it including talking to the breast care team about any side effects. Unless they know what is happening to her body they can't support her fully. She is not being a nuisance, they would rather know. You being at her side will really help her through. Make sure you have someone to talk to about your emotions too though. Xx

[Debs1962]

Hi Gina, you are an amazing daughter to reach out and get help for your mum, my suggestion would be get your mum to come onto this site, as when you are going through BC sometimes you need to talk to people who are going through the same.

There are loads of ladies on here who have been through the same as your mum, are going through it now also, and that is a comfort to someone going through cancer, that you are not the only one.

Just being there for your mum, talking when she wants to talk, and reassure her that you are strong enough for her to talk to about anything.

Treatment for HER 2 herceptin is remarkable, and effective my cousin in OZ has it, and the lady who had a mastectomy the same time as me was Her2 also, so she will get through this and come out the other end, a little battle scared and different, we all change a bit after BC, the way you look at life etc. Everything just is different priorities etc.

I changed my life style, and diet felt I had to do something positive to feel I had some control.

Hugs to you and mum xx

[Chrissie2]

So sorry to hear about you mum- I re-itterate everything that has been said. Your mum is lucky to have a good support network around her already. All our journeys are so different so it is diffucult to say how she is going to be with treatment but just be there for her when she needs you. There are his support networks out there for you too if you need support for yourself and, of course, there is lots of good advice on this site. Let us know how you all get on. Best wishes to you all xx

[blue_sky1]

Hi Gina, A difficult time for you and your mum. Remember however that a huge number of breast cancers are survivable and chances are very high your mum will be just fine. I had Stage 3C BC 6 years ago and am now completely cancer free through doing nothing more spectacular than leading a generally healthy and positive lifestyle and obviously having conventional treatment. The main thing your mum will be struggling with is FEAR. So offer her reassurance and the chance to talk about this. She will need support with her feelings more than anything else. If you can ask her how she feels and be there to listen to her you will be giving her a wonderful gift. Don't let her stray into negativity and pessimism. Get her to reflect on all the things that are good about her life (including you) and encourage her to enjoy life and spend more time on the things that she loves to do. Well done Gina, what a lovely daughter you are. xxxx

[jillypig63]

Ive just recently finished my last herceptin two weeks ago x i wont lie it is a rocky road sometimes but keeping positive and being surrounded round positive people helpsx loosing hair is a difficult stage but the nhs have a fantastic wig fitting which was my saviour as im not a very confident person and going out in public in a scarf or bald was difficult for me my wig was my best friend x when your mom has chemo tell her to take a book and hot water bottle. Sandwich and water because its a few hours waiting around x tell her to listen to her body rest and sleep when she feels tired x i got very emotional on my last herceptin as it was my last treatment and couldn't believe how the time had gone so fast x i wont lie when your having treatment it feels like its never ending but take it one step at a time x im sending my love to you and your family too because its hard too for you as my partner said its easy for people to ask how the patient is but the family suffer too x positivity is the way forward x safe journey to your mom she can beat this xxxxx

[Hidden]

Hello Gina

So much good advice on here , I am currently sat in the physio department of my local hospital after having my mastectomy and re-construction last Thursday, if I could have fast forwarded from last August to see me now that would have been great ! One thing I would suggest is to just deal with the next stage of treatment , don't jump ahead , just deal with the immediate situation whether that be next appointment , surgery , chemo etc . Everyone has different orders of things and siightly different treatment which I didn't appreciate until I was in the system.

Your mum will be aware that she wants to protect you and your family if at all possible , telling my children was my hardest part ( and I'm guessing most people's) my sons have been great but I wanted them to carry on with their own lives and not get too wrapped up in mine , and I think that has worked for us so far, they have been to appointments with me and chemo , blood tests but only when they have wanted too.

I have been very lucky having a fantastic family and group of friends who have supported me and I'm sure that makes things easier too, but also make sure you look after yourselves as your mum will worry otherwise !

Best wishes to you all , there are lots of people on here who can offer support for you and your mum.

X

[Berylynn]

All the replies are good, its a scary time, mum will be in shock...family as well...you think the worst. Waiting in the unknown for the next drip of information can mentally unbalance, so expect some outbursts. At this point of time build on what you know...you can focus on little helpful buys...baby shampoo, creams, scarves, the marsden cookbook, vegan cookbooks, experiment in kitchen in the sense help to make treats that freeze, just be there for her. And investigate the online wig stores...we get a voucher for a wig but its attached to hairdressing shops. Save pics online of styles that might suit her, they might come useful if she still wants hair, you might get giggles. I found my head sweats too much when its hot in my wig so only use outside and look like a lab rat indoors ie...not got to docetaxel yet. Investigate where the nearest wig shop is, talk to them. Just focus on preparation, that might mean questions to ask, there are a lot of hints online, take each step as it comes. If you live at home be prepared to swap places while she recovers...I do hardly any housework chemo week 1 and 2. Its difficult...its short term...and hopefully things calm down to a new normality, and healthy outcome. So far found Chemo the nurses chatty, hardly spoke to my husband. Yet admired one elderly woman coming with two friends...they were planning things and no way letting there friends positivity slide, I guess agewise well into 75s. It put me to shame, as I hardly spoke to my husband. Keep up the good work. Xx

[Louisejr]

Hi Gina

I was diagnosed in September of last year, my daughter was 26 and my son 25, I also have two step-daughters 23 and 25. I found it hard initially to tell them. They were all wonderfully supportive in their own individual ways, my daughter who I am very close to was the one that I could tell everything to, she picked me up on my down days, laughed with me on my good days. My son was always there to give me a big hug when I needed one, and my stepdaughters, kept me in flowers. What I did find though is that the person who was my rock was my husband and I didn't realise how hard it was for him as I was being swept along on a wave of appointments and trying to get my head around it all, but all of the kids realised how hard he was taking it and rallied round him too. On the day of my operation, my daughter sent him a lovely text, saying she was thinking of him, and how much it mean't to her that he was there for me - which I thought was very special.

The one thing this has done has brought us all closer as a family, I have brought my stepdaughters up from a young age, and I love them like my own, but I now appreciate that they think the world of me and were as worried by all of this as my own children were.

You sound like a lovely, caring daughter and i am sure just being there for your Mum will be enough for her.

Sending love and best wishes to you, your Mum and family.

Louise xxx

[Maz1965]

Hi Gina

Sorry to hear about your mums diagnosis. Do you know if she is getting FECT chemo. I was diagnosed with HER2+ Cancer in 2014 and had FECT-T chemo, surgery, radiotherapy and herceptin. I fully expected a mastectomy as my tumour was 6cms but the chemo got rid of it and only required a lumpectomy.

She needs to listen to her body and get lots of rest. I was advised to eat as though i was pregnant as your immune system is low. Just being there for her and give her a sense of normality in her life. You can become totally absorbed in the journey. Take each week at a time and dont think beyond the next treatment. Use local cancer centres as they will provide you with lots of info - i did that more towards the end of chemo.

If she is gettinng FECT, tell her to wear dark nail varnish as the chemo is very aggressive and can make your nails fall off. I did lose all my finger and toe nails but not until my chemo was over.

Good luck and best wish to you all xx

[Hidden]

Hi Gina

Your mum is very lucky to have your support. I agree with what other posters have said but just wanted to add that if your mum is anything like me and probably others here, cancer makes you feel stripped of your identity, losing hair, lifestyle change i.e hospital trips, etc...one thing I was determined it was not going to make me feel redundant on was being a mother! yes i needed more TLC and at times it felt like roles had been reversed my number 1 concern was always my kids, 9 and 17 at time of my diagnosis. What I'm trying to say is, try to make your mums life in between treatments etc...as normal as possible, trust her to rest when she knows she needs to but also let her just be mum when she needs to be.

Take care, and anything you're not sure about or just want to share, we are all here to help you through.

caz x

[Suemarch]

Hi! I am going through the same treatment at the moment. I have had 3 cycles of FEC and start 3 cycles of Taxotere with Herceptin on Friday. I will then have axillary lymph node clearance and radiotherapy. Herceptin will continue 3 weekly for a year.

I have 2 sons, 30 and 26 and 2 step children, 39 and 37. They have all been brilliant in their own ways. My stepdaughter is very sensitive and gives lots of hugs. My stepson carries on as normal.

My oldest son, is very organised and sensible, but has always kept his thoughts to himself and never used to show his emotions. I was diagnosed with a melanoma back in 2009 and went through lots of negative emotions -I even looked at funeral music! He shut himself off and was reluctant to talk about his feelings. This time, with breast cancer being diagnosed in September, I have been less stressed and emotionally wrecked, which I think has helped him enormously and enabled him to ask more questions and discuss feelings, treatment and side effects.

My youngest son has always made me laugh and smile, even on my darkest days. He has joked about my hair loss and “chemo brain”, which has been brilliant!

Side effects have not been as bad as I was expecting, but they differ with each individual. My 1st week post chemo has left me tired, unable to sleep, reduced taste, odd sensation in my mouth and constipated. These side effects have improved over week 2 and I have been almost back to normal during week 3, ready for the next dose.

We decided between us, that I would let them know how I was on a daily basis, as they didn’t want to keep pestering me -especially if I was not feeling great or resting when they contacted me. As the weeks progressed, things weren’t changing, so I said I wouldn’t contact them daily unless there was anything different happening. They wanted to know what was said at all the appointments and didn’t want me to hold back on any negative information.

What I appreciate more than anything, is just knowing that they are there if I want to talk or vent. Most times it has been by text or email and they have either responded in the same way or phoned me.

I love spending time with them. They both live quite a distance a way, so it is really nice when they visit or if my husband and I go to visit them. FaceTime is great, we can put the iPad on a surface and chat away as if we’re in the same room. They have offered to sit with me though chemo, but my husband wants to be there and the boys do live too far away for it to be practical.

I expect your mum will be worried about her 1st session. The treatments took about an hour and the nurse sat with me infusing the drugs manually. This was good, because I could ask questions and talk about treatment without me feeling I was keeping her from other patients. I had read up all I could about side effects, but didn’t know what I would personally experience.

I was tense for the 1st few days post chemo and I am sure this led to a headache which I couldn’t get rid of. I had to make myself relax each muscle. The 2nd cycle was much easier, as I knew roughly what to expect. Beauty treatments have been brilliant, facials, pedicures, manicures and back massages. There is a charity, Look Good, Feel Better. If your mum has access to one of these sessions, please get her to sign up. It did me a lot of good to see others in the same situation, but at different stages. I also went for a wig before I started treatment, so that it was there when my hair began to fall out. This happened literally 2 weeks after my 1st season. I see why they say your hair falls out -it literally does. I would move my hands over my ahead to squeeze the excess water out after washing it and my hair just slid off my head. The speed at which it came out was unbelievable. It didn’t all come out, I was left with whispy patches, so I went to the hairdressers and had it cut really short. I bought a lot of hats, beanies and headscarves. There are so many lovely ones available at very reasonable prices. You can get a basic beanie to which you can add scarves or headbands. I bought quite a few interchangeable ones from annabanana, which I can colour coordinate with outfits.

I am looking at the whole treatment in segments. I had surgery (mine was odd, because I was only diagnosed with cancer post surgery -that was a huge blow!), I had appointments to attend, then I had my treatment plan. I had a PICC line inserted, which meant I didn’t have to have a cannula inserted every time I needed chemo or neede bloods taken. The 1st 3 sessions are now done, I am about to start my next 3 cycles, then surgery for lymph nodes, then radiotherapy, then Herceptin. It can all be broken up, which makes each part more manageable. During each cycle, I go to hospital to have my line flushed and the dressing changed and 2 days before chemo is due, I have bloods taken and I have an appointment with the oncologist. The line flushes can also be done at the GP surgery, by district nurses or by a trained friend or family member.

There is so much going on, the time actually does pass very quickly.

In summary (sorry this has been so long), 1st week following chemo, I wanted to be left alone, but happy to chat by text/email/phone, week 2, I enjoyed having visitors for short spells of time and week 3, I wanted to socialise more. Ask her questions about her treatment and how she is feeling.

Today, I am in a country house hotel on a 3 day Christmas break and loving it. It is easy to fit in outings around chemo. I have been complemented on my variations of headgear and being colour coordinated and I feel good 😊

Take your mum for a relaxing massage during week 3, or a drive out somewhere. Energy levels aren’t great, but they are not so low that you can’t get out and about. Her body will let her know if she does too much. Tell her to rest and listen to her body. Don’t be an invalid, but be careful. Just be there if she wants to talk or moan and spend time with her. Time with those you love is more valuable than anything.

There is so much help available, ask the breast care nurses or the nurses giving chemo. They have heard it all before and have a wealth of information to give. X