Month: March 2021

The Osbourne Trust

The Osbourne Trust

Who we are I’m Emma and I founded and now run The Osborne Trust, the only national charity that focuses all of our support on the children of a parent with cancer. The Trust was launched in 2014 after my own cancer diagnosis aged 36 years with 

Navigate – a new support for parents

Navigate – a new support for parents

As a Breast CNS Team in a large NHS Trust, we see breast cancer patients who we support from screening, diagnosis, treatment and beyond. Our role has changed over the years and non-more so than in the last twelve months since the coronavirus pandemic hit 

My daughter was 15 when I got cancer

My daughter was 15 when I got cancer

This guest blog is from Gloria whose daughter was fifteen when Gloria was diagnosed with breast cancer.

I was 54 years old when I found a lump in my right breast. It was late September and in October 2018 I was diagnosed with breast cancer. It was a total shock and the icing on the cake, because it came at a time in my life that was already so difficult. I didn’t know how I was going to cope.

Nothing prepares you for those words, “You have cancer.” I just cried.

My daughter was 15 and at the stage where she was finding teenage life difficult. Our relationship was so strained I thought I was going mad. I just thought that life couldn’t get any worse. I was alone with a teenager and now a cancer diagnosis.

My family were not living close to me so I went to all my hospital appointments alone and felt I had to be strong around my daughter. She knew I was upset but I kept the crying for when I was on my own.

Taking to a teenager about such a difficult situation when they are going through big life changes themselves is so tough. The hug my daughter gave me when I told her that I had cancer was so beautiful – it had been a while.

She was getting ready for her GCSEs and was very stressed. As a mother, it was important that I told her what I was going through but in a way that could put her mind at ease. It wasn’t easy.

I went from being told that I would have a lumpectomy (which was not too invasive) to needing a mastectomy and losing my nipple. Then more surgery to give me a new nipple and to adjust my other breast to make both breasts look similar.

I was heartbroken.

But through it all, having my daughter to think about made me stronger. I had to think of her as well as myself. And this gave me the strength I needed to be strong.

Thank you Ines, you have been my rock at the most difficult time in my life.

I think it was helped by the fact that after a while, going through cancer for me was just like having a cold. And I think I did a good job at the most difficult time in my life.

Now two years on

Now 2 years on I have a new breast and hopefully my phase 2 will happen soon. My daughter is now at university and I feel lucky to be alive to tell my story.  It’s not easy but my goodness, cancer and teenagers show you how strong you can be when you didn’t know you had it in you to be.

March 2021

Telling my children (10-year-olds and 14-year-old) I had cancer

Telling my children (10-year-olds and 14-year-old) I had cancer

This guest blog is from Mary Huckle, in which she talks about how she told her 10-year-old twin girls and 14-year-old son she’s been diagnosed with cancer. She shares her tips for dealing with children of this age group. 7 Things to Consider When Telling 

Motherhood through Cancer

Motherhood through Cancer

Motherhood is hard enough without a cancer diagnosis! In a time of pandemic, being confined to our homes, home schooling and wearing countless hats of not only parent, but teacher, entertainer, friend, sibling, chef and cleaner, having a ten-year-old pre tween daughter and going through 

Cancer and Mum Guilt

Cancer and Mum Guilt

People talk about mum guilt a lot. It would seem that you have children and then the sense of responsibility leads to an enormous amount of guilt about everything. Am I doing enough with them? Am I over stimulating them? Are they eating enough fruit and veg? Are they eating too much fruit and veg? Are they getting enough sleep? Are they having too many naps? All the guilt, all the time. 

And then a cancer diagnosis comes along.

As soon as I’d been diagnosed with cancer, that pesky guilt seeped in immediately… even if my logical mind knew it was nonsense. I’ve ruined their innocent childhood. I’ve brought cancer into their lives. They understand too much too soon about concepts I want to protect them from. 

Our minds are tricky and sometimes not particularly kind to us. In the face of a diagnosis that would take all my strength and resilience to face with courage and grace, my mind was trying to tell me I had failed my children somehow. 

Throw a lockdown into the equation too and suddenly these young, energetic, creative and curious minds are stuck at home with a fatigued, foggy, weary, run down Mum. I was the ‘do it all’ Mum and yet I’d become the opposite. I was the ‘hundreds of plans in a weekend’ Mum and the ‘stretch myself too thin so everyone could be happy’ Mum. This new version of Mum they were seeing was everything I wanted to shield my kids from. Instead, ironically, I was having to now shield inside, with them off school, seeing all the chemo side effects in all their glory. Having them at school would have meant I could ride the worst of the chemo out without them around. My battery was flat with them at home constantly and my guilt went off the scale. 

With my husband stepping up to every role that I could not be at this time, I had to adjust to being the ‘hugging Mum’, the ‘always in her bed Mum’, the ‘one with all the kisses Mum’, the ‘read a story Mum’ and the ‘rarely playing Mum’. It was the hardest adjustment I have ever had to make. Knowing that I could no longer do everything I wanted to for them. Seeing in their faces the bewildered looks the days I simply could not get out of bed as even my face muscles felt fatigued.

And then the windows of energy would come and the appreciation of being able to do more for my children would kick in. Throw anything at me, I will cope.  These pockets of energy would have me savour every bit of my babies – lapping up the joy of being out with them, or playing more with them. Filling my cup right up allowing my guilt to ease somewhat.

The thing about children as I start to come out of the worst of it physically is, they don’t dwell on what has been. My babies are seven and five and they wake each day with a renewed excitement for what today might bring. Even in lockdown. Even with parks being about our only exciting outing. Practically every day has still been an adventure. 

Have they been impacted by my cancer diagnosis? It will always be hard to know the full extent due to lockdown and lack of their usual routines having its own impact too. They sometimes refer to me being ill and my daughter especially likes to remind me that I have a dreadful memory now. But my illness does not define their days. They remember a summer of fun and not a summer where I was in hospital for a week. They remember spending lots of time at home, but very rarely mention how much I slept during it. They live for today and remind me to do the same each day. 

Living in the moment, present day to day, leaves no room for guilt to play its part. Guilt is regretting what you haven’t done and being present is dealing with what you can do today. My children don’t dwell on what they haven’t done this past year so why should I. Especially when one day I will be able to explain to them just how much my love for them spurred me on during my darkest days of my treatment. And as a friend once pointed out to me when I was having a guilty moment, one day they will have a greater understanding of all that we faced as a family this year, and it will teach them resilience, strength and the ability to face uncertainty with positivity. I wish cancer hadn’t touched their lives so young, but perhaps the lessons we will all gain from this experience will be more positive than I can imagine yet.  Guilt will try and rear its head but we can only play the cards we are dealt; do the best we can do and not dwell on a life we cannot have. So, my verdict on feeling guilty with my cancer diagnosis moving forwards… Not Guilty. 

March 2021

I didn’t tell my son I had cancer

I didn’t tell my son I had cancer

You’ve been diagnosed with cancer. The big question is… do you tell your kids? As parents we naturally want to protect our children from anything that might hurt, upset or worry them. It’s part of a parent’s make-up. If we could wrap our children in 

Advice for parenting while going through cancer

Advice for parenting while going through cancer

This guest blog is from Sara Olsher, founder of Mighty & Bright, a company in the US focusing on support systems for children who are faced with traumatic situations such parents going through cancer or a divorce. Here, Sara talks about why she started Mighty&Bright 

Fruitfly Collective advice on telling children

Fruitfly Collective advice on telling children

This is a guest blog from the Fruitfly Collective about how to talk to and support your children throughout your cancer diagnosis.

One of the reasons why it so hard to tell your child that you have cancer is the primal feeling of wanting to protect them from any harm, worry or concern.

The trouble is that children easily pick up on things, and have amazing imaginations. Even if you think you’re hiding your grief, pain, and emotions supremely well – they know something is up. Not telling them, or giving them partial or incorrect information can be more worrying than the truth.

So how to start?

Here are some tips to help start talking:

  • Rehearse what you will say out loud in front of a mirror. It can be frightening to say ‘I have cancer’ for the first time.
  • Choose a calm space and a quiet time of day – not before your child’s bedtime if possible.
  • Don’t use misleading ideas like ‘I have a bug’ or confusing terms like ‘I have the big C’.
  • Use the jigsaw approach if you’re not ready to tell them everything. One small piece at a time.
  • If you cry, it shows them that it’s OK to show emotions.
  • Give your children time to take the information in – silences can show they are processing what you have said.
  • Ask if they have any particular worries. It’s perfectly fine to say you don’t know some of the answers.
  • It can be helpful to have some resources to hand. Having something to look at and fiddle with can make you feel more in control (recommend the free app ‘Kids Guide To Cancer’)

It doesn’t matter how old your child is, the key aims are to reassure them, show them love and security, and to open a safe space for them to ask questions.

What to tell them?

Well, this will depend on the child’s age and development.

Most young children need to simply hear that cancer is a sickness, that you are trying to get better with the help of the doctors. Don’t be surprised if they want to go and play and react like nothing has happened.

For older children you could say something simple like:

I have an illness called cancer. It means some lumps are growing inside my body that shouldn’t be there. I have many doctors and nurses who are helping me”. They are likely to ask lots of questions, so perhaps prepare yourself with some answers.

A few things to note.

Children can often believe they have caused the cancer by behaving badly or thinking bad thoughts, and they might think cancer is contagious. So tell them, you can’t catch cancer, and nothing they did, thought or said caused the cancer.

Also, keep in mind that nearly every child will either ask or think the question ‘Are you going to die?’. This is the worst question ever but it needs to be addressed. Try not to brush it off, but instead say something like ‘Nothing is for certain yet’. It shows you are not shutting them down and makes them feel more secure.

Teenagers like the truth delivered in a non-patronising way. Often sitting next to them to talk rather than opposite them works better. It’s all about giving them space, and not being too confrontational and staring into their eyes.

Look for any changes in your child’s behaviour as this might be a clue to how they are feeling.

For example, they may return to younger behaviours such as thumb sucking or wetting the bed, or suddenly  become afraid of something they were not previously before. Some children display more anger, some complain of headaches/stomach aches and some children will have no reaction which can be hurtful but it’s their way of processing it. All these responses are normal.

How to support them?

What can you do to make this easier, especially when your life is upside down too? Basically all the support revolves around giving them security with boundaries, facilitating good communication, and showing them love. Ask for help from family, friends, and your child’s school.

Some ideas:
  • Tell them of any changes in their routine. Use calendars and daily time tables so they are not surprised by sudden changes, and feel in control of their lives.
  • Help them identify their feelings, e.g. by reading stories or drawing them out.
  • Include them in the family decisions, and give them small appropriate tasks, e.g. make them chief toilet roll changer.  
  • Create a worry box. Take any box and tell your child they can either draw or write their worries on paper and park them in the box. You can come to an agreement where you both look at the worries at the end of the day or week, or get their consent to simply have a look from time to time.
  • Encourage them to fun & organise special time together – e.g. picnic on the bedroom floor or a film – small things not Chessington World of Adventures.
  • Keep communicating – try different methods to see what works for your family, e.g. Post it notes around the house; Weekly family discussions around the table; Going to favourite café to talk once a week; Whatsapp messaging; Talking in the car.
Final four lessons…

Finally, it often helps parents with their fears when I share these four lessons I learnt from my experience of teaching over 1000 primary school children about cancer.

1) Children are genuinely curious about cancer – even those who are recently affected. They have the capacity to understand if explanations are age appropriate.

2) Children have an amazing ability to deal with the truth that adults often underestimate, and this is largely because they don’t have the same fears as adults.

3) Children enjoy the opportunity to speak about cancer – especially those affected.

4) Every child has some degree of awareness of cancer whether it is news from the media, public health or charity campaigns, or shops on the high street. Most of what they believe is incorrect.

For resources to help with these difficult conversations, go to www.fruitflycollective.com

‘When Cells Misbehave’ primary school programme teaching children about the science of cancer. Children were incredibly interested, engaged and curious about cancer. Many of these children had experience cancer in their families and communities but all of them wanted to be involved in the workshop.
‘When Cells Misbehave’ primary school programme teaching children about the science of cancer. Children loved dressing up to remove a fluffy tumour from Mavis. They were all part of the medical team and all had roles participating in treating her. Many of these children had experience cancer in their families and communities.
Young children really enjoy ‘looking after’ a sick teddy. It is also useful to ask about the teddy’s emotions as a way of understanding your child’s feelings. This is Truffles from our Hedgehog Cancer Cloud toolkits. We talk about Truffle’s prickly feelings and supply an essential kit (bandage, plaster, syringe and blanket!).
Finding ways to communicate feelings. This is our Feelings Tree which comes with 90 different emotions. Children (and adults) can stick on leaves to demonstrate how they are feeling. Parents have said that it helps them to understand what is going on inside their child’s head.

Caroline Leek is the founder and director of Fruit Fly Collective, a multi award winning not for profit organisation that focuses on improving the public’s understanding of cancer as well as supporting individuals and their families affected by cancer.

www.fruitflycollective.com
@fruitflycollective (Instagram/Facebook)
@FruitflyC (Twitter)

March 2021

The information and content provided on this page is intended for information and educational purposes only and is not intended to substitute for professional medical advice.

Parenting with cancer (17 month old and 4 years old)

Parenting with cancer (17 month old and 4 years old)

Natasha had a four year old son and seventeen month old daughter when she was diagnosed with breast cancer and here she explains how she talked to her children about her cancer diagnosis and generally managed her parenting while going through cancer. My diagnosis When 

Cancer & pregnancy – Mummy’s Star

Cancer & pregnancy – Mummy’s Star

In this guest blog, Pete Wallroth, founder and CEO of Mummy’s Star talks about why he set up the charity. He also talks about how it can support parents of babies up to the age of 12 months, and those going through pregnancy whilst diagnosed 

Breastfeeding and breast cancer

Breastfeeding and breast cancer

In this guest blog, Kathryn talks about breastfeeding and a cancer diagnosis.

One year ago

One year ago today (as I write this) I breastfed Grace for the last time.  One year ago today I was told I had cancer.   

I remember it so vividly, the first thing I said when I was told it was cancer was “but I’m breastfeeding“; the consultant was quick to reply that breastfeeding doesn’t prevent cancer just lowers the risk of certain types, and though rare to get it whilst breastfeeding, it can happen. It turned out that the type of cancer I had was triple negative so no hormone involvement, breastfeeding would have made no difference to the risk.    

I had to stop breastfeeding immediately in case I needed an urgent operation as we didn’t yet know my full diagnosis. I decided I’d do one last feed to sleep that night.  I’ll never forget how I sat on my daughter’s bedroom floor, holding her, breathing her in as she fed for the last time, tears streaming down my face at being forced into this position.  Sadness encompassed my whole being as I felt I was letting her down and things were about to change so much for her, for all of us, I was fearful of what 2020 held.   

Breastfeeding Grace

I am proud to have breastfed and to have continued to do so for so long.  I’m grateful she was two and a half years old and not a newborn. It meant we’d had an exceptionally good run, but this was certainly not how or when I’d planned to stop. I loved that by still breastfeeding her I had an easy way to bring her comfort when needed – when she was hurt, sad or tired.  When she was ill and couldn’t eat or hold down food, being able to breastfeed ensured nutrition, hydration and helped in boosting the immune system.  I could still offer her good nutrition whilst she picked her way through what food she would and wouldn’t eat.  The benefits of long-term breastfeeding are huge, you can read more about them here.   

I had been reducing feeds with a view to stopping by the time she was three and she’d stopped feeding through the day.  I noticed the lump in my breast because as I reduced feeds the milk supply lessened and it became obvious. Initially I assumed it was mastitis, the lump was in the exact place and felt the same as when I’d had mastitis previously, however I was not getting the pain I would normally get with milk build up and I wasn’t getting the temperature that always accompanied these mastitis episodes. 

After a week of it not relieving itself with the usual self-help methods I used I made an appointment at my GP surgery. I saw a nurse who also thought it was mastitis and told me to come back in two weeks if it was no better. I did just that and the GP referred me to the breast clinic. After a two week wait I was finally seen.  Cancer had still not crossed my mind as a possibility because I was breastfeeding  and so assumed it was still likely to be a blocked duct or a cyst, something like that.    

I should add here that cases of mastitis should be diagnosed and resolved quickly – ideally within a 12-24 hour period and so the advice I received had it been mastitis was completely inaccurate.  If mastitis was suspected I should have been signposted to a breast care clinic immediately; of course it may be the nurse had her suspicions and had other reasons to wait two further weeks. See this article from the Breastfeeding Network for some evidence-based information on the signs of mastitis and some self-help tips.

Throughout our time breastfeeding Grace had had issues with latching on the side of the breast with cancer, I saw a chiropractor with her and tried various methods when she was a baby to try to sort it. I often wonder if there was a difference due to the cancer and that’s why she struggled, but then it’s a common issue to struggle with the latch to one side, and second guessing doesn’t change anything.     

My diagnosis

When I was told it was cancer I was alone, not because of Covid, that wasn’t a thing yet, but because I just hadn’t taken in the seriousness of what was happening. My world fell apart, I felt like I was floating above my body and all I could think was I can’t die I need to be around for Grace.  

I attended hospital shortly after the initial diagnosis for some scans to see how far the cancer had spread. I was sat waiting for an MRI when I realised I was looking at a photo of me breastfeeding Grace – I did a double take! In August that year I had been part of a campaign in the South West to normalise breastfeeding and the images of me and Grace were now plastered all over the hospital. I lost count of the amount of areas I spotted them, sometimes I would look proudly and smile, other days tears would fall at the loss and grief I felt seeing the reminder.    

I sometimes flashback to that last night feeding her to sleep, so many emotions running through me, fearing for my life, fearing leaving Grace with no mum and failing her completely.  My stomach turns, tears fall and my heart aches when the memory flashes, I feel like I’m in the room all over again feeling the fear and devastation.   

Fortunately Grace, who was quite the booby monster, actually took it quite well.  My partner took on the bedtime routine to help wean her whilst I sat feeling guilty hearing her cry. Just before bed I would have to pretend I was going to work so she would go with my partner to bed without looking for me, if she thought I was out she would happily go with him and get ready for bed. 

There were sadly always tears at the time of actually settling her to sleep because she was so used to the comfort of feeding to sleep, no other drink helped.  I would sit and cry listening to her, sometimes I’d go down to my parents (they live in the lower floor flat of our house) so I couldn’t hear her cry because I found it so distressing being unable to comfort her in our normal way, in the way she’d only ever known.  I felt so angry I was in this position, helpless and powerless.     

Thankfully my partner would stay with Grace and comfort her until she did sleep so she always had comfort, just not the kind she was used to. 

Dealing with my milk production  

My next challenge was how to deal with overflowing milk and avoid mastitis. I fortunately managed this by releasing a little of the milk a few times a day by hand expressing, reducing eventually to just the morning and then stopping altogether as the milk flow slowed right down. This worked well which was fortunate as I had no support or advice on how to reduce feeding safely for both me and Grace.

I feel this is something that should have been offered, even by way of signposting elsewhere and that is the main reason I am writing this blog in the hope any other mums who find themselves in a similar position will be able to reach out for the right support they need.  There are medications that can help reduce supply which is something worth being aware of.  La Leche League have an excellent article with tips on how to stop breastfeeding suddenly here.   

If you find yourself in the position of being unable to breastfeed it can bring up a huge amount of emotion.   You might feel guilty, angry, frustrated and that’s normal.  It might be you are ok with formula feeding and concentrating on you and getting through the cancer treatment and that is ok too.  There is no right or wrong way to feel but know whatever way you do feel is OK and there is help available if you want it.   Breastfeeding grief and trauma is real and whatever you feel it is valid.  

For those with smaller babies who may not be able to breastfeed through treatment you may find breast donor milk of use.  Mothers donate their breast milk through local milk bank schemes and then it’s stored and donated to those that need it.  This may feel strange to some parents to be feeding someone else’s milk to their baby, or it may bring great comfort knowing your baby is still getting some breastmilk nutrition.   You can find out more about breastmilk donation here and here.

That said there is of course nothing wrong with feeding formula if that’s what you choose to do and is your preferred option.     

Some mums have been able to relactate once treatment gets to a safe point to feed again.  This is worth looking into and asking questions about.  Be aware your medical team aren’t necessarily experts in breastfeeding so don’t be afraid to ask your questions and seek support from a breastfeeding professional.   

Generally, you can’t breastfeed during chemotherapy as it will pass to the baby through the milk, you may be able to breastfeed through radiotherapy and you are likely to need to reduce milk production before and after surgery to reduce the risk of infection.  With surgery this will also of course depend on the type you have, if a mastectomy is what you are having you are unlikely to be able to breastfeed, however if you are keeping one breast it is possible to feed from breast one alone.     

Breastfeeding has been something very special for me, my body did it very well and it was a wonderful experience for which I’ll always be grateful.  Grace still likes her “booby snuggles” when she needs comforting, this involves her sticking her cold hands down my top, I don’t mind, one day she will grow out of it but she can do that in her own time.   

Top five tips if told to stop breastfeeding due to cancer.   
  1. Check your treatment plan, if mastectomy or chemotherapy isn’t in it there may be a chance you can still breastfeed.   
  2. Think about any questions you have and don’t be afraid to ask them, then find professional breastfeeding support and get their opinion on what you’ve been told if you are left feeling unsure.   
  3. Seek advice on how to reduce milk supply and/or stop.  You want to reduce the risks of mastitis as much as possible.  Your oncology team may have help for this but if not see what support is available near you.  I’ve listed some resources below and you may have breastfeeding peer supporters in your local area who can help.   
  4. Don’t be afraid of your emotions.  Cancer will bring up a lot of emotions, know that this is ok and if you want support it is available.     
  5. Don’t be afraid to advocate for yourself, this is your body, your baby and you have a say in what happens.     
A few resources that are worth knowing about.   
  • Wendy Jones is a Pharmacist who specialises in medication and breastfeeding. Too often breastfeeding mums are told they can’t take various medications when in fact they may be safe, Wendy can help offer guidance if you need it.    
  • Why Breastfeeding Grief and Trauma Matter by Amy Brown –  “A startingly large number of women who want to breastfeed have to stop before they are ready, leaving them feeling a range of emotions including grief, shame and frustration, and often blaming themselves.  Professor Amy Brown has researched what breastfeeding really means to women, how they can feel when things don’t go according to plan.”  This is an evidence-based guide and may assist to confirm whatever you may feel is 100% valid and have some useful information.  Another in this series that may be of interest is Why Mothers’ Medication Matters by Wendy Jones.    
      
  • National Breastfeeding Helpline – Independent, confidential, mother-centred, non-judgmental breastfeeding support and information –0300 100 0212 website: https://www.nationalbreastfeedinghelpline.org.uk/  
      
  • KellysMom – an informative parenting and breastfeeding website https://kellymom.com/  
  • Mummy’s Star  – Mummy’s Star is the only charity in the UK and Ireland dedicated to women and their families diagnosed with cancer during pregnancy or within 12 months of giving birth.  Their mission is to provide cancer support to every family facing this traumatic situation. https://www.mummysstar.org/
  • The Association of Breastfeeding Mothers – Supporting breastfeeding mums and families.  Trained breastfeeding counsellors run a helpline. https://abm.me.uk/

I was diagnosed with Grade 3 Stage 3 Triple Negative Breast Cancer having spread to my lymph nodes and I had 6 chemotherapies (was due 18 but my body reacted badly, fortunately my 7x3cm tumour could no longer be seen on scans after only 3 chemotherapy treatments).  I had a lumpectomy with full node removal followed by 20 rounds of radiotherapy and now have no evidence of disease.  Grace is very happy. I am still struggling with physical recovery due to the impact treatment has had on my existing health conditions but am extremely happy and grateful to be cancer free! 

You can find me on Insta @Kathryn_Says and Facebook Kathryn Says

March 2021

The information and content provided on this page is intended for information and educational purposes only and is not intended to substitute for professional medical advice.

Breast cancer with a three month old baby

Breast cancer with a three month old baby

In this guest blog, Bronwyn talks about being diagnosed with breast cancer with a three month old baby. So where do I start, the having a baby part or the getting diagnosed with breast cancer part. Let’s be honest, the two do not make the 

Cancer diagnosis during pregnancy

Cancer diagnosis during pregnancy

My story of a cancer diagnosis and treatment during pregnancy. I found my lump a week or two before I knew I was pregnant. It was a hard pea size lump just under my skin. I told myself I would keep an eye on it