**Tamoxigang counting down to Easter eggs- thread 48**

[BetsyBoop]

throws some hot cross buns on the trolley

Lily I hope it went well and you made it to waitrose !

Pickle I hope the meeting at school went well and they have some strategies and support to put into place

The cough I was worried about has turned into a cold so probably was just a cough after all ! I seem to have a lot on this week coming starting with a weekend away in London, I suppose this is life getting a bit more back to normal. Or the new normal.

Meeting was dreadful. They said they will be recommending that ds loses his scholarship because there have been occasions whilst I was in hospital where he refused to do some lessons and refused to do some homework.

They think they are being wonderfully supportive but when put on the spot couldn't actually demonstrate what they had done to support ds. In fact they admitted they had not implemented various strategies I had asked for (eg having a member of staff to meet with ds once a week to see how he was; having someone ds can give a scorecard to on a daily basis 1-10 so he can communicate how he is feeling; and having a safe place ds could go to when he needed time out).

I am at the end of my tether with them. Ds is already under the care of a psychologist because of the bullying he endured last year and which was badly handled by school.

I explained my forthcoming (most likely) treatment regime - another 5 weeks in local hospital, 4/6 weeks at home and 4/6 weeks in transplant hospital. The head of pastoral care said "So you'll be in hospital for two weeks?"

If ds does lose his scholarship he will have to leave the school as I would not want to pay the increased fees if he is banned from the activity he loves (and the reason he got a place at the school). I would also write to the Chair of Governors to point out how completely let down ds has been and how unsupported he was.

Being out two days in a row has left me feeling absolutely shattered.

pickle I'm fuming for you, that's so awful, they have given your DS no help atall by the seems of it, you really need to take it higher, which you can indeed do without at the moment,
Would the Macmillan nurse speak to the school? You just don't need this stress

Right, pickle, that is absolutely atrocious. I'm completely fuming. Bloody useless school. And so tough for you to deal with when you're not well. And so tough for your ds who is reacting to a very tough situation very normally. Writing to the Chair of Governors is a good idea. Anyone else to contact? Any way of shaming them? Writing down point by point where they have failed him would help in any further discussions. Sorry, I'm getting over involved here, which isn't helpful. Good luck. Thank goodness the holidays are soon.

pickle, that is awful. How stressful and unnecessary, for both you and DS.

I have been racking my brains trying to think what might help you here.

If I could afford it, in your shoes I would actually consider instructing a solicitor to write a strong letter, on the basis that the school is not meeting its duties under the Equality Act 2010.

I haven't quite worked out the argument in my head, but it would go something like this. You are deemed to be disabled under the Act because you have (or had) a form of cancer. DS is 'associated' with you, so he is also protected under the Act. His recent difficulties at school probably stem from your treatment & illness; the school has entirely failed to make reasonable adjustments or take these issues into account, and have therefore directly or indirectly discriminated against him on the grounds of your disability. Or something like that.

failing that, would your local Parent Partnership assist? They exist for children with SEN, (and forgive me but I have not seen any suggestion that your DS has additional needs), but part of their remit is to support parents in disputes with school, and it might be that if DS currently needs extra pastoral support, they might be able to work with you/him.

PP www.parentpartnership.org.uk/about-us/

Best of luck with everything.

I think ds's card is completely marked and if he stayed at the school his life would be made even more unpleasant. I'm not sure I'm interested in fighting to keep him in that position as I envisage the slightest step out of line would be made truly horrible for him.

He really wants to stay mainly because of the facilities but I pointed out he'd only have a year at the local primary before he could move on to a school with even better facilities than his current school. He would know some dcs at the local school too so it wouldn't be a completely horrible move. I am going to see if we can schedule a visit next week so ds can see that it really isn't as horrible. He would also have a lot more freedom as he could walk to and from school on his own.

it could be a fresh new start for you both.

Pickle I'm sorry you're having to deal with all of this on top of your treatment, they are being really crap. New school sounds like it might be a good idea

Everyone I have spoken to about school (this has been going on months) have said how appalling they are supporting ds.

I agree about a fresh start although I know ds will be sad to leave. I'm fed up with fighting for something that should be offered to ds as of right. My friends at other schools have all said this would be handled better and my friends at ds's current school are not at all surprised about what is going on.

Ds's previous school has already said they would find space for him next term if needed even though they are full and they would welcome him back.

Pickle what a dreadful attitude from the school! I know that DS' school always made sure that pupils in that type of situation would not have to leave due to financial reasons.

I was in hospital for 6.5 hours for my blood tranfusion! Two hours lost because of mix up over labelling of bloods. Got to Waitrose and was last in queue for my "free" coffee before the cafe closed. Now about to tuck into a ready meal (DH is abroad on business so slobby TV meal is permissible).

I can afford to pay full fees but I wouldn't want to pay for the complete lack of support he is getting. I do know of someone who had paid full fees for 14 years and asked for support for one term and the head refused.

Lily that mix up would drive me mad. Having a blood transfusion in the first place is one of the most boring activities I can think of let alone waiting two hours to start

Pickle How awful for you and your ds. Must be so tough when you have such a lot to cope with. Would be returning to previous school I think. They sound welcoming and understanding

Glad you got to Waitrose, Lily! And the free coffee.

Pickle, you're right of course. That school is never going to be the right one at this point, and I think practical steps to get your ds somewhere supportive is the key. (But do still do the letter to the governors; it is so unacceptable).

Pickle, what heartless pricks those school assholes sound. Totally lacking in human decency. How would they feel if the roles were reversed?

My dcs have had nothing but support from their school in contrast, they have had to have time out to cry and rage and be lost and confused but the school has understood. It has been very reassuring for me.

I hope your lovely ds can find a haven at a school who will help him through.

Hello everyone. I'm new to posting but have been reading without posting for a few months now. It's so great to see what a support you are to each other. I've been very lucky so far. Small tumour, caught early with clear margins. Sentinel nodes were clear. I'm already started on Tamoxifen, started about a month ago. I'm not starting radiotherapy for another couple of weeks. By then it will be two months since my lumpectomy. I've kept to this site and McMillan and Breast Cancer Care and have just read that my radiotherapy should have begun a month after the op. Do any of you knowledgeable people know anything about this? It has seemed a long time to wait...thanks if anyone can explain.

Morning everyone
Greyhound welcome, glad you have come to join us though sorry you are here too
I don't know about the delay, I know my rads dept was very busy with 140 patients a day so fitting them in was a problem. I waited from surgery at the beginning of December to start rads in feb though bit different as I had already had another op and chemo before

What's everyone up to today ? I need to go into school to start to find out everything I have missed in my 10 months off, things change so much so quickly then it's take your mum to rangers night tonight

Morning all. I feel full of resolve today. Ds is utterly devastated at the thought of moving schools but I realise I need to do it to protect his fragile mental health.

I had a lovely chat with the head of our closest state school. They have no space and are one above their usual admission number in ds's year. However she has arranged for us to visit on Monday. Ds is adamant that he does not want to go there but I want him to come with me and see for himself. He is a bit hung up on the facilities his current school has (same as you'd expect at secondary) but I'm hoping that the local environment and easier school work may appeal.

I'm off to John Lewis today with my mum to have a coffee and look at sewing machines. I need distraction at the moment and also need to get away from the massive tin of biscuits which arrived from my office (really lovely huge tin full of biscuits and cake).

I hope everyone has a good day. I'm looking forward to the forecast warm and sunny weekend.

John Lewis sewing machines! Yes! I bought a rather basic Brother model from them online, but then basic is where I'm at. I love the embroidery threads and so forth that they have there, but haven't yet persuaded myself that I'm about to take up embroidery... Enjoy it, Pickle! And those cakes and biscuits: so kind, and yet, and yet....

Hi greyhounds, sorry I can't help on the rads front. All I know is that some of the government standards for when care should happen don't have a clear clinical basis (this from my surgeon, tho' in the context of a late op, so she was trying to justify it!) and are a bit arbitrary.

greyhounds welcome - my hospital's policy is a minimum of 6 weeks from surgery to rads to ensure you are properly healed. (my surgery was 11/11 and rads started 3/1) In terms of the NHS cancer charter they are supposed to start treatment within 31 days of deciding you are ready for it (eg within 31 days of assessing you are sufficiently healed after your op). I'm sure I read somewhere that rads MUST be started within 12 weeks of surgery (if no chemo) or they may not be as effective, but I can't find it now....So I guess I'm saying don't worry about it. :)

pickle :( re you DS's school. my children's school were amazingly supportive, which is how it should be. We have enough to worry about going through chemo etc without worrying about that too. :(

Hi all

Day 3 of Radiotherapy for me! Already fed up with going to the hospital everyday! Not helped by the fact that both sessions so far have taken over 45mins! My shoulder is getting sore from lying in the same position for so long!

Did anyone else have rads using ABC (breath holding) if so did it ever get any quicker? Radiotherapy people said first few sessions are always longer, but I can't c how they can ever do it any quicker!?

really rads is just very tedious, but will be over sooner than you think, just keep ticking them off :) My first two or three sessions were definitely longer, they speed up as they and you get used to getting you into position quicker. We didn't do anything as fancy as ABC, just told to keep completely still and to try not to breath during the actual zapping!

Thanks Betsy just what i needed to hear! Think I'm just struggling with the whole juggling rads and work! My one promise to myself was that I wouldn't let Cancer take over my life! Up to now I've done okay ish! Just an odd day off here and there! But its much harder with rads and I find myself constantly thinking about things while I'm sat around the hospital.

I suppose I'm also thinking about the fact that even when the rads are done, this nightmare still won't be over!

Apologies moan and self pitying moment over! Back to positive thinking!

They do sound long sessions really, mine were about 15 mins but I didn't have the breathing thing either they just told me to lie still and breathe normally. Hopefully they will get quicker
You are amazing to have worked all through, I don't know how you've done it :)

Hi everyone.

Can anyone help with locating a (cheap) seam-free t-shirt?

Post surgery, my armpit and upper arm are becoming irritated, i think the sensation is returning, and it is aggravated by seams in clothes. So-called 'seam free' tops from BHS and the like are only seam free in the body, there is a very clear and obvious seam joining the arm on to the body.

traviata my radiographer's top tip was to wear an old t-shirt inside out when you were in the house :)