Hi, As you can see I’m newly diagnosed. Am going in for mastectomy the week after next and then probable radiotherapy. Have Grade 2 cancer about 5cm. I have a 5 year old who has Aspergers and at a mainstream school 2 miles from home, and I am also the only carer for elderly parents who are 15 miles away. They are now unable to drive and rely on me for everything! I have no idea how I’m going to do this. Hubby is very supportive but looking after me and our son is going to be more than enough for him to try and manage as well as holding down his job. No idea what I’m going to do about my parents, the rest of our relatives are 200 miles away.
I have been told that once I come home from hospital I should be able to manage days on my own - is this realistic? Or will I need care for a few days/fortnight etc?
How did those of you with children manage looking after them? How much was your home routine affected? Routine is a very big thing with Aspergers children, any change can cause immense problems and I want to try and keep things on as even a keel as possible, but that means him being home with me most nights after school rather than having him go to a friends or whatever.
Sorry you have had to join us but welcome anyway - hope you get as much from this site as I have cos I have picked up so many hints and tips.
I had mastectomy in December on a Tuesday - got home on the Saturday - and drove myself to the hospital on the Monday to have fluid drained so there was no stopping me - my bcn said as long as you have pretty full range of movement in your arm and feel safe to drive then to do so.
Can you not organise help from your parents gp for a few weeks to help them - meals on wheels and domestic help etc??
I live alone with my 14 year old daughter - altho she spends half the week with her dad - so altho I had plenty of offers of help for shopping etc - I started going on my own pretty much right away - just for little bits and bobs - but am lucky in that I have an asda a 10 min walk away. AS far as home routine - I just took it slowly and hoovered with my left hand as opposed to my right which was surgery side and things like that.
Hope this helps
Wishing you all the very best in the world
Fiona
xxx
Sorry to hear of your dx but welcome to this site. I have a son (older than yours 12) who has behavioural problems but is a stickler for routine, will only eat what I cook. I got round this by making sure dad did some of the cooking before I went into hospital and also made sure that it was all his favourites that were cooked - even if this meant me and him cooking them together and freezing them.
The mastectomy was not too bad it is the lymph nodes that were really sore so no lifting. pushing pulling on that side etc. My OH didnt have any extra time off once I came home it was an option if I needed it but I felt there would be other times when it would be more important. My son though not normally very loving and affectionate has been only to pleased to be able to do anything to help me.
You should be able to get help and support through your gp or social services to help with your parents (Are your receiving Attendance Allowance this is not means tested) this money can be used for help for your parents with cooking cleaning etc.
Hi Sunnymeg,
I had my mastectomy on Tuesday. I was told strictly no driving for two weeks. If I were to drive I would not be insured as I was told my my doctor not to. To be honest, I am feeling well but would not attempt to drive as I don’t think I would be comfortable doing it. I tend to keep my arm against my body all the time as otherwise my scar pulls and hurts.
Try to get as much rest as possible when your son is at school in order to be with him when he gets back.
Take all the help that is offered by friends, neighbours and ask them to run those errands for your relatives. You might want to consider doing a mega shopping before you get into hospital, so there will be less to be done by others later.
Hi Sunnymeg, I have mast/recon a week today and have been told no driving for 6 weeks - which sounds impossible. My surgeon says you have to be able to do an emergency stop and as recon is from my tummy he maintains no sooner than 6 weeks. Nurse said maybe 4-5 weeks and check with insurance company first as they may set a limit after major surgery.
Agree have a word with the GP as help should be available for your parents. Does your son’s teacher know, so they can make allowances for him? He’s very small to understand what is happening quite apart from the challenge of Asperger’s. I hope you can take it as easy as possible until you feel strong enough to get out and about again. Best wishes xxxx
Thanks for all your help, I am off to see headmaster tomorrow - I’m sure they will be very good with him. The problem with my parents is that they will not have anyone apart from family in the house. A few years ago they lived next to someone who was convicted of a murder, he was in and out of their house all the time and seemed a really nice bloke. I think they have lost their trust in other people. They should have had carers in before now but they refuse to do so.
Good luck with the Head Master tomorrow hope it goes well for you.
Plese try and reassure your parents that the carers are fully checked out by the police before they are able to have the job. They would have a chance of meeting these people before they started to care for them my FIL was not very keen on having carers in at first but in the end he loved having the extra company and it meant when we visited it was to spend time with him rather than rushing to get jobs done for him.
Hello Sunnymeg,
I’d just like to confirm what Karen (owls4eva) said: my aunt and uncle were also absolutely against “strangers” in the house but when it came to deciding whether to leave their home and go into care, or have carers in, they gave in and are now very pleased they did. They appreciate the help and the company, and for the rest of the family it was also a big help. It is a big step for independent people (my house is my castle!), but once taken, I am sure your parents won’t regret it.
Best wishes for you,
petitepart
Just to update you all, had a long conversation with mum yesterday, they will not accept care under any circumstances, and I mean any! I really feel that in many ways I have to distance myself emotionally as I have more than enough to deal with. It’s so tough at the moment. My op is due for mext wednesday, but still no letter from the hospital. I just want to know basic things to get things organised.
Hi Sunnymeg, elderly parents can be a worry can’t they? but you must put yourself first for a while. Would they accept a delivery of groceries from a supermarket? it can be done for them on line by another relative however far away they live.
My 89yr old parents will use taxis for trips to the doctor etc. I think you are right to distance yourself emotionally. If they find themselves in difficulty I am sure they will have a change of heart.
I was also told to wait 5 weeks before driving. I am a driving instructor, so I couldn’t risk driving without insurance, and each insurance company seems to have different rules.
You will probably find that you get tired very quickly for the first few weeks. Try to take it easy, do your exercises, and look after yourself.
Heidicat x
Sorry to hear about your parents, maybe you will have to be cruel to be kind. If you knock yourself up you wont be any good to them or your family, so what will happen then. Maybe if you just take a small step ack and stick to your guns (easier said than done - but we are all here to support you) they may well realise that you are being serious.
How did you get on with the Head Master, my middle son came home and told me that youngest son the one with problems is behaving really badly, so I phoned school this morning and they confirmed that this is true but they thought I had enough on. I have asked that in future they keep me updated all the time so that we can give him the stability that he needs and we are all singing from the same hymn sheet. Just thought I would mention it so that you are aware that sometimes you are being protected when you would rather not be. The bit that really bugs me is that I thought he was just being diabolical at home but behaving in school because I hadnt heard any different!!!
Thanks, school were very good but have encouraged me not to tell other parents what is going on until after the op etc. Seems they are worried about the ‘cancer’ word being spread around the playground and frightening little one.
I have been for my pre op this morning they are worried about my chest expansion. I do have a back condition and she bent me over to test my chest, so I hoping its nothing more than how I hold my back affecting the way I breath. Had chest x ray anyway. I think it is finally sinking in that this is really going to happen. Hubby asked the same questions about timescales again and got different answers again, so that seems to be par for the course. Off to doctors on Monday to discuss affect Tamoxifen may have on my back re joint pain etc as my back problem in skeletal rather than muscular. Then going to have lazy day on Tuesday and then in on Wednesday and op that afternoon.
I have been on tamoxifen for a month now and also have a none muscular back condition (scoliosis with a metal rod to stop further curvature of the spine) so far I havent had any side effects. I discussed it with my oncologist and GPand they both said see what happens first asyou can always stop the tamoxifen if it becomes unbearable but like I said so far so good. Also started zoladex this week, same again no effects so far.
Hope this is useful, if not just ignore it. Good Luck. Shonagh xx
glad you got good response from school, my sons are older thatn yours so I told them all what was happening and keep them updated (hate answering some of their questions) working on the theory that they will trust us enough to know that no matte what other kids tell them that they can ask us and know we will be truthfull. Saying that when for chemo chekc up today starts tomorrow and disuccused cleanliness with them 3 boys!!! but pointed out they coudl make me feel really poorly and they have been washing hands etc WOW bc maybe not all bad he he
Keep in touch I start chemo tomorrow so dont know how I wil feel but will try to let you know Im ok
Custard - thanks, my condition is similar to scoliosos, so that was helpful. I can now hear a cracking noise when I move some of my joints, which I am sure I never heard before, so I am quite worried.
Just to let you know back in the land of the living dont feel brill but better than yesterday thanks for the good wishes and will be back in touch soon
Sunnymeg,
All the very best for your op tomorrow. I’m sure you’ll be in good hands. I’m in Somerset also, and have a son with AS (he is 26 now…). Will be thinking of you tomorrow.