Have you had issues dealing with your children's school

Hi all

We’re thinking about pulling together some information to help people deal with their children’s school through breast cancer treatment.

We wondered how many people had had issues with their children’s schools, perhaps in terms of staff not understanding the impact of a breast cancer diagnosis on your children, or practical issues like not being able to park near the school, or how the news was communicated to other staff/students?

We’d like to hear your experiences, good and bad, with schools (primary and secondary). Post them here, or feel free to send me a message if you’d prefer.

Thanks
Leah

what a fab idea! My son is 13, and in year 8 of high school. His school as been amazing. Ive kept in touch with the school by ringing them every few weeks or so, to let them know what was happening. Ive had 2 wle, rads, and chemo.

They had a letter put around to all of jj (my sons) teachers so they would know what was going on at home. School even raised £250 for macmillan by a teachers cake sale!

I think what helped with their understanding is that a few years back one of the staff went through bc herself.

eva

very interesting subject.

My children are at boarding school and i have had to be very open with the school this year about everything. They did ask if there was a book or advice they could get as to how to play it. At one point my daughter had a bit of a breakdown about everhting. she is 13 and started to look on the internet. The school sent her to the school doctor because they didnt want to worry me which made things a bit worse as the GP knows nothing about my case or what treatment I was having and just advised her that Secondry BC is not great. This sent her into complete meltdown. A booklet on how to handle the children would be great.

My daughter came to hospital with me in the end and questioned the nurses and Onk about everything and is now much much happier, and knows that there is a lot that can be done to keep life ticking on.

I think also things she found hard to handle was me not looking as normal as the othere parents and othere parents wispering in the car park. I did tell the headmaster and the housemaster to tell everyone anything they asked. Some guidance for the teachers would have been wonderful. Please get in touch if you need help. I am a teacher myself so do have a bit of an insight into this world. Teachers just love guidlines on how to handle situations ! :slight_smile:

regards Victoria

Hi Leah

I think that this is a very good idea. I think that as well as information for patients with school age children, there could be a leaflet to give to the school. I don’t think that schools should automatically be handed the leaflet, if there weren’t any children with parents being treated, as it would be filed away! however when a parent had BC, it would be very useful for the school to know how to help the child, with relevant up-to-date literature.

I speak from experience, as a teacher and obviously as a parent of a child with a parent being treated.

I think care would need to be taken to ensure that there wasn’t ‘one’ area of advice/recommendations given, as all children handle difficult times differently. We are a very open family and share problems etc. I instructed the headteacher to write to all parents outlining my treatment etc, to explain my absence from school, and my appearance at the gates! (My son was attending the school where I taught) My son felt totally supported by his friends, their parents and everyone working at the school. However I respect the right for others to keep the news to themselves and some children don’t like special attention.

I am also of the belief that if people have more knowledge they don’t make their own (usually wrong assumptions!)I talked openly to pupils and parents about my treatments, wig etc which appeared to stop ‘gossiping.’

I think that the thing that helped my son a great deal was the school’s hugh charity drive to raise money for the local hospital’s appeal to raise money for a sentinal node machine of some sort!
The school raised a phenomenal amount of over £11,000 towards the appeal, through concerts, social events, a huge sponsored walk for families, sponsored swims for the children. My son felt that he was doing something for me! It gave him a little bit of power back!

From a teacher’s point of view, we like to do what the parent feels is best for the family, not just the child, if the parents need disabled spaces, they just need to ask! Schools often only know of individual’s requirements if they are told specifically. Schools help best when they are as well informed as possible, also if the parent is particularly ill, or away in hospital etc the school really should be informed, so that the child can be given a little extra TLC if relevant or a little less pressure!

My son’s secondary school amazed me when I was diagnosed with secondaries last month, I had e-mailed them to inform them, mainly to look out for my son. I received a lovely card and a huge basket of fruit, which I thought was a lovely gesture. So schools do want to help they just need to be well informed.

I think that it would also be relevant to include material for children whose parents aren’t going to get better! As this is a whole different scenario, a primary diagnosis is all about being positive and enduring treatments to make the parent better. However with a secondary diagnosis, the child is facing uncertainty over how long their parent will still be there for them.

If I can help in any way with your publication from a school’s perspective, as well as a parent, please do get in touch with me.

Regards Nicky

I agree that this would be a great idea. When I was diagnosed I spoke to my sons teacher - he was a NQ and only 23 and he just didnt know what to say to me - he seemed embarassed. I asked him to keep an eye on Joe who was just 10 at the time and to let other staff know the situation. My boy for instance refused to go on a field study trip as I was in the middle of chemo and he didnt want to sleep away from home and they were very understanding. I do feel the school would have liked more info to fall back on and I really dont know if they would have handled my son appropriately had he needed more support from them - so yep a very good idea x Debbie

I have to say my childrens’ primary school have been fantastic. They strongly encourage parents to advise the school of any issues at home that may affect children so that they can work in partnership with parents to provide the best environment for the children.

I agree that totally honesty is the best policy when it comes to schools. I informed the head teacher within a short time of my diagnosis and often meet with her to give updates on my situation with secondary breast cancer. The chidlren’s teachers are aware of what is going on and report any concerns they have over the childrens’ behaviours. My daughter is in year 6 and her class covered the subject of cancer as a serious illness in their personal, social and health education process. However, prior to this the teacher had conversations with my daughter and with her consent informed her classmates that I had cancer and also set up a signal that my daughter could give if she found the conversation too difficult and wanted to leave the room. From my perspective this was handled with great care and my daughter’s friends have been incredibly supportive. I also met with the school’s counsellor and their school/parent co-ordinator and we shared booklets and leaflets that we found helpful.

My concern is that my daughter is starting secondary school in September and I am really not sure how that school will deal with our situation.

Would it be helpful if we asked our schools to be in contact with you in anyway so that they could advise you of their perspective and what information would help them? My childrens’ school had no previous experience of a parent with secondary cancer so it has been a learning curve for them too.

Snoogle

Hi Leah

I’m another one who is a teacher in a primary school, and a parent of kids who were in nursery and year 1 at my dx.

My children’s school were fantastic throughout treatment. Having had experience of teaching children with family experiences of cancer and other serious illnesses, I decided to be upfront in communicating with my chidren’s school, and it has made the process easier when I’ve needed to inform them about things since. They were supportive about thing like taking the kids out for a few days for a holiday when I finished treatment etc. As you would imagine a lot of the staff and parents at both schools have their own experiences of bc.

I was quite clear about how much I wanted to tell the school. Having said that, what I felt they needed to know in order to support my childen was sometimes more than I would have wanted. I was also clear about what I wanted in terms of keeping things as normal as possible for my children.

There were some things to work through-sometimes some people did interrogate me, and ask very personal questions (purely out of a desire to show interest and concern)and once there was a bc talk by a teacher rather than someone with any medical or bc support ‘hat’ during bc awareness month, which upset some children (not mine, that everyone mentioned to me but I never got to the bottom of. But overall I could not have asked for more form the school.

They were brilliantly low key with the kids-as I requested- kept an eye out for them, and just made the school side of things easier for us all. I had several hospital admissions during treatment, and was iller during chemo than anticipated, and it was important to me to know that the school were keeping things as normal as possible for my two during the day when plans changed at home.

I had a very long list of emergency contacts. Schools have one or two as as routine, but having a list that covers all bases when there is a lot of uncertainty makes quite a difference. They knew which of the other mums could step in and collect if I couldn’t get there, and I asked if they could let me know if anyone in their classes had any notifiable infections. They would occassionally ring if someone had chicken pox, or send out a general letter if there was a nasty d and v bug doing the rounds.

As a teacher, I take my lead from the parent or carer-as another post mentions as well as the different dx, and different experiences for prmary and secondary bc, the way families approach things is very different. Not everyone wants to tell people about their situation. I’m used to the school system, and all the procedures, but that didn’t stop me finding it tough at times to talk to them as a parent.
I know that lots of parents don’t like to approach schools too much, and feel uncomfortable speaking about personal things with teachers. I did struggle to make a distinction about the fact that my cancer wasn’t secret, but it was private, and the lack of privacy I felt at times was hard. I think this is inevitable if you have school-age children. There are so many more people who need to be involved if you are unwell.

I ended up giving up work during treatment, and had some hair by the time I returned, so I haven’t discussed my illness with the children I teach, but as I teach very close to the one my children attend,(and several have moved from one t’other at various points) several parents know and I am prepared for the fact my kids or I may be asked about it.
In the past I have occasionally been surprised by a teacher’s reactions towards children who have a serious illness in the family, but generally my experience on both sides has been very positive.

I hope some of this is usefu-it is a bit of a ramble. I’m also happy for you to contact me if I can help at all.
C x

That is the final edit-have been trying to correct all my typos, having said what I do for a living, but can’t do any more !

I have found the school to be great. They reserved a seat for me at the front for one of my son’s assemblies, which kind of made me feel like an invalid, but they obviously were kind enough to think of me.

I have not been very good at returning forms for trips,etc but they seem to understand that I have other things to worry about.

They have also said to me that if there is any problems with school drop off or pick up and they will do all they can to help.

Couldn’t fault them to be honest!

Paula x

can’t fault my sons school either, he is in reception class and i am currently having chemo. I spoke to the head teacher and told her and she filled up with tears! But that just made me ralised how much she genuinely cared, and she was so very kind and helpful. They have given my little boy extra reading practice at school as we just couldn’t get it done as we used to at home. They have really kept an eye on him for us. I gave them a copy of “mummys lump” to keep and the headteacher, class teacher and classroom assistants read it so they knew what language i would be using to explain things to my boys. I have kept them up to date at every stage so they know what my boy is facing at home. I think a booklet would be good to give them, or a series of booklets perhaps for different circumstances? I felt more productive being able to give them Mummys lump book, so i think if we could go armed with info to help the school , that would give us more of a sense of control.

School has been a fantastic support to me through this and i am very grateful.

I can’t fault my kids schools either.
My son is in primary school, they have been wonderful. I told the headmistress soon after I was dx, she then passed on the information to his teaching assistant who has really looked out for my son, even taking him to her house to play with her son, who is also in the same class to give me a rest when she has seen how tired I’ve been.
She informs me when he has had a sad day in school so I can give him some extra tlc when he comes home.
My daughter is in year 7 of high school.
They also have been fantastic giving extra support from the school chaplain who has councelled her through a very tough time as her grandad died 3 days before my dx. The chaplain also rang me to say that if I ever needed anything that she was there for me to.
Her maths teacher sent me a lovely silver angel with a card saying that if she could help in anyway to let her know.
I think as long as you inform school of any chamges at home then they know that if a child is acting out of character then they can deal with the situation better.
My daughter has been abit forgetful( more because I haven’t been well enough to remind her) and school have been more lenient than they would have otherwise been, giving her alittle more time to finish homework and not punishing her if she has fogotten her pe kit, it’s just little things like these that make life a little easier at a very stressful time.
Chris

Am afraid my daughter’s school not so good. Despite reassurances last September from the headteacher I feel her year 3 teacher hasn’t paid any attention at all. All the way through chemo I had homework sent home to be done again even colouring in which wasn’t up to standard! I had thoughtless notes sent home when things got forgotten & despite requesting friends to share with on a residential trip she has been separated from her main friends & asked to look after another child with health issues! A lot for a wonderfully, caring, supportive 8 year old. I gave her “The Secret C” book which explained the treatments & how I might feel & she has always been curious to know what’s happening. Not sure what to do about the lack of pastoral care in the school may have to wait for the next offsted review to give my feedback when I feel stronger.

My eldest also has ‘The Secret C’, a very good book.

My daughter was in year 7 when I was dx. She was already being bullied for being ‘too clever’, after my dx she had girls going round the playground saying ‘Xxxx’s mum has cancer and is going to die’. The school seemed to be powerless to stop the bullying or discover who was at the bottom of all the nastiness. Each time there was an incident, I would contact the school, they would appear to sort it out, but then it would happen all over again. I think under normal circumstances she would have been able to cope with the bullying for being too clever, but with my dx and what was being said, we were watching her slowly sinking under the weight of it all. Eventually we moved her to an independent school in year 9, where she is thriving. I was really upset at having to resort to this, I had been a very strong believer in children going to their local state school, but unfortunately our local state school could not address the issues, or stop it happening.

Hi Tresanne

Being a teacher and a parent myself I am disgusted by the way that your daughter was treated. Does she attend a state school, because schools may ask parents to sign a home-school contract, however whatever they may state, doing homework at primary school is not, I believe a legal requirement (I checked after being informed by an irrate Year 4 parent who doesn’t agree with homework and won’t let her son do it!)

I do set homework, but to send it home to be done again, for not being done as the teacher wanted, is outrageous. I wouldn’t dream of undermining children like that!

With regard to pastoral care, I would recommend putting your concerns in writing and sending a letter to the teacher, headteacher or chair of Governors. Your daughter’s emotional wellbeing should be of great concern to her teacher (more so than the presentation of her homework!) Her teacher should be asking how she can help your family, not criticise you for forgetting things.

Roadrunner - I knew children could be cruel, but didn’t think anyone could stoop that low! …really pleased that she is happy now!

Best Wishes to you all and all of your children who shouldn’t have to be going through this!

Nicky

Roadrunner - what a dreadful situation your poor daughter was in - it’s scarcely credible that children can be so cruel. Well done for moving her.

Thanks for sharing your experiences on this topic. It’s really helpful to hear the range of experiences, both good and bad.

Snoogle, you asked whether it would be useful for schools to contact us with their perspective, so we can make sure anything we do is useful to them. The answer is yes, that would be fabulous. You can ask them to email me on <script type=“text/javascript”>eval(unescape(‘%64%6f%63%75%6d%65%6e%74%2e%77%72%69%74%65%28%27%3c%61%20%68%72%65%66%3d%22%6d%61%69%6c%74%6f%3a%6c%65%61%68%77%40%62%72%65%61%73%74%63%61%6e%63%65%72%63%61%72%65%2e%6f%72%67%2e%75%6b%22%3e%6c%65%61%68%77%40%62%72%65%61%73%74%63%61%6e%63%65%72%63%61%72%65%2e%6f%72%67%2e%75%6b%3c%2f%61%3e%27%29%3b’))</script> or call 0845 092 0800 and ask to speak to me or Kristy in the publications team.

Keep the experiences coming - we really want to hear from you.

Thanks
Leah

Hi All,

My daughters are slightly older with the youngest doing A levels at this moment in time. Following my mx and recon we had a knock at the door and there was my daughter’s form tutor on the door step with a beautiful bouquet for both of us, it really meant a lot to me at that time. The school have been very supportive and took extra care to look after her especially during a geography field trip ensuring that they were always available should she need them. Being a big secondary school, they have had many experiences of parents with all sorts of cancer and seem to have a good knowledge and support network for their pupils. I can only praise them for all the care they have given to my daughter to get her to this position and enable her to take her exams.

Marjay

My youngest daughter (J) had just started her final GCSE year when I was diagnosed last year. Her tutor was absolutely fantastic. My daughter broke down on the first morning after we told her and her tutor took her to one side (in her cupboard in fact) and just cuddled her until she calmed down. Most of the contact I had with the school was through e-mail and I kept her tutor up to date with things, particularly letting her know when new treatment was starting, that I thought would upset J. And in return she let me know how J was getting on, letting me know when she had had bad days.

She notified all of J’s teachers asking them to lay off her for a bit and to liaise with her if J was having problems. Only one teacher caused any problems, and I was furious about this. J only told a few of her friends about my dx. At the end of one lesson where J had been a bit lively the teacher called her over in front of the rest of the class and said that he knew that J had problems at home at the moment, but she had to behave. I had no problems with him telling her off but to talk in front of the whole class about the problems was unacceptable because afterwards others in the class questioned her on what was wrong at home. I contacted the tutor about this and J got an apology from the teacher.

After my first chemo I was taken back in to hospital as an emergency due to extreme sickness. In A & E all I could think of was that J would be ariving home to an empty house knowing I had been unwell in the morning. My eldest daughter rang J as school finished and got her to go and speak to her tutor. The tutor found another teacher with a car and they drove her to the hospital to see me. The next day the tutor had brought my daughter some flowers to give to me.
Other teachers have been great. I have met with a couple about J getting stressed with exams and they have all been great.

Working in a school we have so much paperwork I think a leaflet would get lost. Maybe something given to patient on dx to help them with talking to the school or even to give to the teacher.

Teachers don’t get any training on how to deal with situations like this. Today we had a parent come and tell us that the sister of one of our pupils has been diagnosed with a brain tumour at the age of 12(she was one of our pupils unil last July, so is known to a lot of us) The teacher she spoke to broke down after she had left as she just didn’t know what to do.

Hi
Just reading the last post, and I agree with the issue about paperwork and leaflets-schools are inundated, and sometimes leaflets don’t reach the expected recipient. The idea of the parent being able to pass something on seems a good idea.
The point cmw makes about training also made me think. I’ve been teaching a long time, and there have been many pupils with very serious situations at home or illness themselves. Only in very extreme situations, or in the instance of a child in the class being ill has there been any where to go for any sort of guidance as a professional on the best ways of being supportive.
C x

Hi
Another teacher here my children are in reception and nursery. I found that because in the early stages of school there is a constant flow of information anyway , through Reading diaries etc. It has been easy to keep the school updated and get feedback on how the situation is being dealt with. It is really important at any age that problems are dealt with quickly. Children, when v little are very egocentric, but that does not mean that uncertainty does not effect them deep down. Giving them the chance to have their questions answered is very important and with little children these questions could arise at any time. Therefore you must trust that the school will answer those questions in a way you are happy with. It is not appropriate with little ones to ask them to wait for answers.

It is important that the school knows what you have called the illness. I really thought about whether to call it cancer. My instinct told me to use the word. But I was concerned that on the playground children would tell my daughter that their somebody had died from cancer. Or that she would see the cancer research ad on tv and realise people died from it. But for now we have called it cancer and explained that there are lots of different types and explained that the doctors have taken it away and very soon I will start to get yucky medicine ( not calpol ) and my hair will fall out. We talked all of this through with the school.
It is a catholic school and the teacher has told me that my daughter likes to spend some quiet time in the prayer area. I am quite happy about this as I see it has a way of coming to terms with her feelings and reflecting on things- notburying them. But I know not everyone is the same.

As a teacher I have only come across these situations a few times . I now feel guilty for some of the
misconceptions I had when dealing with illness in the past. Despite my own grandmother dying from secondary breast cancer I knew very little about it. So when a pupils mother was diagnosed I assumed she would die very soon. I was very wrong. So it is important that on a basic level teacher understand the medical situation and then focus on the child’s well being and possible signs of not coping.

By the way after explaining breast cancer to my daughter I asked her if she had any questions. Her response was yes she did. ’ how do cars work’ ahh the minds of 5 year olds.

Good luck with putting some support together. Debx

just wanted to add that it is also imporatnt that the information is passed on successfully at the end of a year. It is easy to inform the school initially but during the transfer process teachers need to be fully briefed- even if active treatment is finished as problems acan crop up later.