The practicalities of it all

Hi, I am 38, I have 3 children (2, 6, 8) and I have just been diagnosed with invasive grade 2/3 ductal cancer. I have no support family wise nearby, and could do with some honest feedback on what help you think I may need and at which points, as I am going to have to military plan some of it, and pull in a lot of favours.
I have been told (verbal not received the letter yet) that on the 19th I have an isotope injection at one hospital, then on the 20th the operation to take the lump and some glands, then at a minimum radiotherapy and years of tablets. That is the best case.

Could anyone let me know how tired I will be, can I drive, does it all take long ? How much time off work might I need? Should I get signed off work when waiting for the 9 days post op to see if it has spread?

Many thanks, any reply, any words of encouragement through this would be very very much appreciated.

Hi, sorry you have had to join us. I have recently had a small tumor removed and a node biopsy, which sound the same as you will be having, in my experience you will need to take the days between op and results off from work, you won’t be able to drive then anyway. Call in all the favours you can. Sorry can’t help with anything else just hope you are OK. Ruth

Hello Small1, so sorry you have to join this gang, and I really feel for you as you care for your three children with little local support. My experiences are very different from yours so I can’t comment in detail. However, you will need to find good support networks - friends or colleagues or neighbours - and not be afriad to call in all those favours. I am Little Miss Stubborn and even I learned to take help.

It sounds as though you are having a lumpectomy and sentinel lymph node biopsy (the blue radioactive dye thing, often called SNB or SLNB) and there are plenty of folk on here who’ve had that who will be able to help you. Hopefully your nodes will be clear and the radiotherapy just a precaution. I had radiotherapy after all my other treatment and whilst it was boring going back and forth each day, it wasn’t too bad - slightly sore breast from ‘sunburn’ but mostly it was logistics. Some people get tired and it can take 2-4 weeks for the fatigue to hit. You will know if it does. The tablets sound like it’s probably Tamoxifen; different people get different side effects, the most common being hot flushes which can be rotten, but most people learn to live them and help is there if it all gets too much.

Please use the forums here as much as you need to vent or ask questions - there are some lovley folk on here. Lurking is good too! ALso, check the main website as they have some really good leaflets which cover all the main topcis, and there is a younger women’s forum where yuo’ll find more mum’s of young children.

Big hug.

Hello Small 1,
It all seems so scary at this stage, doesn’t it? And it is, but there is lots of support and information available, both on here and through the Breast Cancer Nurses at your hospital.In most places they are very supportive and can tell you what to expect so you can plan and keep your employer informed of what is likely.
My family circumstances are quite different from yours, but agree with RevCat - you will need some support with your little ones after surgery and also some adult moral and practical support for yourself.
The helpline on this website is a good starting point.
Good luck.

Hi Small1

Welcome to the Breast Cancer Care discussion forums, as you can see you will get lots of good support from the many informed users of this site.

To help you along I have put for you below links to some of our publications which you may find helpful, one especially for the children is our book ‘Mummy’s lump’ which a lot of users with young children have found helps with explaining what is happening. All our publications are free as is the helpline where the staff are here to support you, no question is a silly question.

Mummy’s lump
www2.breastcancercare.org.uk/publications/diagnosed-breast-cancer/mummys-lump-bcc164

Younger women with BC
www2.breastcancercare.org.uk/publications/diagnosed-breast-cancer/younger-women-breast-cancer-bcc66

Hope this helps. Take care,
Jo, Facilitator

Hi Small 1

I had the same procedure as you two weeks ago. Mine was all done in one day. I go tomorrow to get my results. Scared stiff in case it has spread. I was told not to drive for 48 hours because of the GA. I was a bit sore and tender after but nothing that a couple of paracetamol didn’t fix. I don’t work but I do look after my 3 year old grandaughter 3 days a week, so I did have a week off in case she hurt nannies booby (which she takes great delight in telling everyone she meets). I did feel quite tired but I think it was emotional tiredness rather from the operation.

I do hope everything goes well for you. This is such an emotional roller coaster, even if you haven’t got family nearby I hope you have a good network of friends that you can talk to and there is always someone here that will answer any questions you have. It has been a godsend for me. x

Hi Small 1,
I’m a 44 year old single mum with 2 kids (12 and 10)and nearest family 200 miles away.
My advice is to ask your friends to text you regularly, that way you won’t feel bad texting back to ask if they’ll pick up a prescription / go to the shops / whatever.
People really do want to help you, so do ask for what you need. I warned friends early on that I might not want visitors, so they knew I wasn’t being rude when it happened!
I also made a 3 week menu which we’ve followed for my chemo: in the first week it’s all easy stuff the kids can just put in the oven themseves. Just before chemo I get Tesco to deliver all the stuff I’ll need for the 3 weeks (as far as poss)so I don’t need to worry about getting food in.
I always take out plenty of cash before chemo, too.
And in the summer hols I made a rota of people to take the kids out for the 4 days after chemo so they weren’t getting teasy around the house.
Hopefully some helpful ideas here?
Good luck. x

Hi, i had a lumpectomy and SNB. The important thing about driving is to check with your insurance. It would be awefyl to loose your licence because someone bashed into you and when they checked the insurance it was found that you were not covered because of your op.

Mine said i could drive as soon as the hospital signed me off, basically the test the hospital applied was could you make an emergency manoeuvre without discomfort. It took me 2 weeks to be able to do it because of the position of the seatbelt and changing gear with my left hand.

You will need some help with the children though. I hope everything goes realy smoothly with no hic-cups but even if it does I dont know if you will be able to lift the 2 year old for a while.

Radiotherapy is different for everyone, but even with no side effects it is a daily trip to the hospital . You will also need to make sure that they are able to arrange the appointments in school time, they will try, but what will you do if they cannot. Will the child care arrangements you have in place for work cover it

Many people are tired and sore with rads. My symptoms hit in the last week of treatment and lasted 2 weeks. I think i was quite lucky. I dont know how demanding your job is, but to have looked after children, run a household and work through it would have been a challange for me.

I dont like pointing out things that can go wrong, but you might need to think what you would do if they did.

some people react badly to the anesthetic and have to be kept in hospital

If the test nodes are not clear they will need to take other nodes out, that is a longer operation, with drains and things and you certainly cannot pick up anything heavy for ages.

Some people are unlucky and they dont get all the lump out first time and they need a second little op, not a big thing but you will be out of action again.

Most people sail through it all and dont have any complications or repeat surgeries but you need to cover yourself just incase.

If you can afford the time off work I would take it. You will recover better if you rest and give your body a chance to heal. You want to be fit to help you deal even with rads.

Why don’t you discuss this with your Breast Care Nurse. she knows how big an operation you are likely to have and what your time commitment to treatment and recovery are likely to be. There might be some help available through the hospital.

I admire you handling all this with no nearby family for support, running a job and three small children. Dont be too proud though, call in as many favours as possible. Its all a mental strain as well as a physical one and the better you look after yourself the more likely you are to be able to cope with it all.

wow all the best but great advice on here from members who have helped me too over the last 2-3 months… i didn’t drive for 2 weeks after WLE and SLNB and if i’m honest when i did i really felt it so please don’t rush as your healing is so important - I had people from the school all offering help and i took it and will do again as starting chemo this week but don’t be afraid to tell the mums as they will want to help - LET THEM! Gives them a halo polish and we have to accept that it can not all be done without some help - you sound like wonder woman but allow your cape to be hung up for a while- save you energy for you and then for your kids to have special mummy time, rather than you over doing it
Love and hugs to you xxxx

just a late night after thought. have you thought about what to tell your children? there is a lovely publication on her called mummy’s boob. its a picture book.

there are also good publications about how to talk to your children and what to say to the school. children are very intuative and might pick up on your worries and might think it is something they have done wrong. they will need talking through your sore operation boob, the disruption in routine etc.

even if you are careful about non scary words, they might hear someone else talking about you.

you sound such an organised and together person you might have thought of all this, but it is just a thought.

oldandlumpy - the book is called mummy’s lump I think, not mummy’s boob. I used the book to explain everything to my grandson who is 7 - he had been worrying about seeing his mum upset about my dx. He has been okay since I talked to him.

Hello Small 1 - just thought I 'd add my own experience. I’m 57, my husband is retired and we’re fairly dependent on my freelance income. I was worried about the practical side of things, because if I don’t work I don’t get paid. And it was at a a really bad time on the work front. Also, happily, I really enjoy what I do. And driving is important as I have no public transport where I live or where I mostly work. (Middle of nowhere!)

I had a small lump removed plus sentinel node biopsy. Fortunately it hadn’t spread to the nodes, so follow up was 3 weeks of radiotherapy and five years of Femara.

I was told to take two weeks off work and not to drive for a week. I i obeyed the driving ban, but crept back to work after a few days. My employers knew I could only do gentle part time and it kept me sane. I was very obedient about the no lifting ban for 6 weeks, and the no ironing (Easy one that one!)

I did take every opportunity to sleep whenever I could. I finished radiotherapy last week and I am very tired by early evening.

My advice (in additional to calling in all the favours etc) would be to concentrate on the essentials. Do what you NEED to do and take plenty of time out for rest and to let your body heal. Let non-essential housework go hang. Clothes don’t need to be ironed and dust won’t harm anyone. Nap when you’re two year old does. Catch up on some reading! Shop online if you can and get groceries delivered. Eat as well as you can - I haven’t gone in for supplements, but have made sure I’m eating a good balanced diet high in protein.

And like everyone says - call in all those favours!

Hello Small 1 I had a lumpectomy and sentinel node biopsy in july , the tumour was 17mm and removed cleanly and the nodes were clear but because of the type of tumour it was recommended that I had what they call adjuvant chemotherapy which is basically to kill any cells which could be drifting around . This stunned me a bit as like you I was just expecting radiotherapy. Had my first chemo 1st sept and am not too bad.
I did not work between the op and results but did drive after 10 days with no problem . It depends which boob for seatbelt purposes .
When people say " if there is anything I can do let me know" have a list of things you may need help with and ask them straightaway.
Accept all help and if you can put yourself first as your children need you to be well which makes you the priority.
Buy in some ready meals .
Hugs
FiXX

Hello small1

I have not had my op yet so cannot give you much practical advice but just wanted to send you a huge hug.

I am due to have my WLE on 30th Sept but they have already found cancerous cells in a lymph node so I am having a full axillary clearance at the same time so I know that I cannot drive for 4 to 6 weeks.

I sincerely hope that things work out well for you and keep in touch because the support I have already received on this site since I joined last week has been amazing.

Good luck

Many many thanks, what a roller coaster. Luckily (!) I am incredibly strong willed, and able to mostly keep all the fear and worries at bay. My op is next Tuesday and I found work very hard today, it just didn’t seem important. I am hopeful that the cancer has not spread, like everyone here, it has been a shock to just be diagnosed, but I have considered the what if. Many thanks for the advice, I will have no problem not cleaning, ironing and eating take out or ready meals, but living in the sticks, driving is essential.

Things must be bad I have my mother in law coming at op time, and my mum planned for radiation time. If that isn’t incentive to get better quick…

A couple of other questions, who signed you off work? And at which point? Do I need to go and see my gp?

Sorry but can I also ask - I am worried about my husband, concerned about the stress he is experiencing, any advice?

Many many thanks, and good luck and best wishes to you all.

I had WLE and SNB and was told initially not to drive for 2 weeks and when I went for my results they did an ultrasound scan and was told not to drive for at least another 2 weeks. It was a nightmare but taught me a lesson in asking for help, day 28 I drove and the seatbelt was still a bit dodgy, but I wasn’t giving in. When I spoke to my insurance company they said as it wasn’t DVLA reportable they weren’t interested.

I only got one certificate from the hospital on the day of surgery which wasnt simple and have since got everything else from my GP who has been really helpful. Although one doc asked if it was ok to put breast cancer on it - like what did he think I had told work lol

Anne

I have actually made an appointment just to have a talk with my GP tonight about where he fits into my overall care with this, rather than leave it until I need to, will let you know if it was worthwhile when I get back.

I am also concerned about my husband because he is being very strong for me at the moment but won’t talk about his feelings on the subject.

We do have a male friend who was pronounced clear last year after skin cancer and when we see him next week he is going to have a quiet word with him to see how he is coping with it all for me.

Had to laugh about your desperate measures having your mum and mother in law coming to help, my mum offered to come and look after me but at 82 I think she would probably be more of a liability bless her.

You get the first sick note from the docs in the hospital. After that it’s often the GP. My surgery would get one done if I phoned them, so I could collect it. Sometimes, if my appointment at chemo co-incided with the end of “fit to work” note, the hosp would do it… not usually a problem. Good luck with the op next week - for me, it was very straight forward (mx and node clearance) - just do the exercises “religiously”… and be gentle with your expectations of yourself… Jane

No one offered me a sick note at all! Luckily my work didn’t ask for one. I go my first sick note from my GP when I went to see him almost as a courtesy between mx and chemo - had to ask for the free prescription form then as well.

Dx

You’ve got so much good advice here. It’s really the driving and insurance when you need to be careful as the general anaesthetic will have affected you and if you have anything done to your lymph nodes you won’t have the normal strength in that arm.

If you have nodes removed you might also come home with a drain in place which will also limit what you can do.

I was wiped out for days after my op, but I had a full node clearance along with the WLE and it was Christmas as well so I just felt totally shell shocked.

If you end up having chemo you also need to be careful with driving as it can make you quite fuzzy headed.

My surgeon gave me my first sick note when he came to visit me the day after my op (although I did have to ask for it). Then I went back to work in between some of my chemos so had about four sick notes in total given by my oncologist - I just asked her and she wrote it out for me with whichever dates I asked for.

Huge hugs and the very best of luck (especially with the assorted mothers!), and remember the BCC forum rule - don’t Google, ask us lot first!!

Jane xxx