That’s not in the manual!

I finished this over a week ago but have only just got to post it. We are currently in for chemotherapy and Eleri is sleeping off the effects so I have some ‘me’ time. Hopefully my posts will become more frequent in the next few weeks as things are settling down. Update on what exactly has been happening to come soon. I just wanted to post this for any parents who might be despairing of their situation and need some comfort…

Today is the first day in a while that I have had chance to sit down and relax. Eleri is playing with her toys, Owen is at nursery and Rob is relaxing on the sofa. So I have grabbed the chance to finish a blog that I have been compiling on parenting a child with cancer. It’s a whole new ball game with different rules and new challenges. Parenting is bloody hard anyway, add cancer to the mix and it becomes almost impossible. Along with the things I’ve come up with below, you just have to stay true to your core values and hope that you all make it through without too much emotional turmoil.

  1. Parent guilt – well we all have it in some form or another. When cancer hits, you feel guilty about everything. There is guilt about leaving to make a coffee, or grabbing a shower (plain selfish) or even going to the toilet (how very dare I!). Other days there is guilt over knowing that your child is fighting cancer while you stand perfectly well by her side or that you didn’t get a diagnosis sooner. One of the worst feelings of guilt comes after you feel sad that you can’t got to social occasions or see friends because you are at the hospital, or because your child is at risk of infection, or you are just all exhausted. Let me make something clear, there isn’t anywhere else I would rather be, but I do feel a pang if longing and sadness when everyone is living life and we have another battle to fight. On top of all that there is guilt because we don’t spend as much time with Owen. It’s a necessary sacrifice and hopefully he won’t remember too much when he is older.
  2. Winging it – well if you didn’t feel like you were winging it before, you do when cancer hits. I can’t lie, I feel like I have always been winging it. I’m almost 100% sure that most other parents feel like they are too, but dealing with a seriously poorly child takes it to a whole new level. All the insecurities that you may have about parenting are amplified. For me, I have always felt that everyone is doing a better job – it’s just how I’m built and in the dark moments it’s easy to believe that you are failing in so many ways. It’s so important to remind yourself that you are doing the very best you can and that is all that matters. Also, it’s still ok to crack a cider or gin or wine to help make dealing with children more bearable – everyone needs to take the edge off!
  3. Adapting to hospital life happens very quickly. Initially walking down the ward felt surreal – almost like a out of body experience. That still happens on occasion, but speaking to other parents has normalised our experiences. Knowing that you are not the only family dealing with the upheaval of diagnosis and treatment is comforting. Also, seeing other families smiling, joking and being happy is so encouraging – you feel that it is possible to cope with a horrible situation. Very quickly you learn medical terms and the process involved in cancer treatment; scans, blood tests, transfusions and emergency admissions are all part of the course. They are completely normal and every family on the ward is having a similar experience. When we are in hospital we almost feel ‘normal’; we aren’t the family dealing with a tragedy that no one else can imagine having to deal with. In hospital we are the same as everyone else.
  4. Junk food is our new best friend. It doesn’t matter what it is, Eleri gets it. If it means going out to get fast food, off we go. Sorry to all the food police that are reading this, but it true. Never in my life have I been so happy to give my child a ridiculously high calorie snack or meal. Sweets, crisps, chocolate, ice cream, cakes, milkshakes, sausage rolls, pancakes – you name it she has it. We are Jamie Oliver’s worst nightmare. She spends so much time not eating and has lost so much weight, that we need to get the calories back into her quickly. Also, chemotherapy changes the tastebuds and makes her crave things that she wouldn’t have before. For example, Eleri developed a obsession with salt and vinegar crisps – they were all she ate for a week. There will be a time where eating so much junk food won’t be necessary, but that is for the future and we will deal when it comes. Right now, fattening Eleri up is our priority.
  5. Poo 💩 – you become obsessed with poo. Never before have I known, or indeed wanted to know, so much about fecal matter. Frequency of, consistency of and colour are of daily concern. A good day is now defined as Eleri having having two poos of a soft consistency with minimal trouble passing them. It’s amazing how your criteria of a good day can change within the space of a few weeks.
  6. Behaviour – this is tricky. Eleri has always been ‘spirited’. This combined with pain, loss of mobility, change in lifestyle and horrible treatment means that she can be very difficult. Her behaviour started to seriously change about a month before diagnosis. She was becoming so difficult that I was considering contacting the doctor for support – this was no small step as I have been teaching children with difficult behaviour for many years. I felt like I was failing her. We now know that difficult behaviour is related to her pain – the worse it is, the more her behaviour deteriorates. Difficult behaviour is also related closely to control. Eleri has lost all control and independence so she is trying to regain that control where she can. This often results in, amongst other things, screaming and shouting when a nurse or doctor want to examine her and refusing to take medication. At these times the best way to deal with her is to ignore the behaviour and the horrible things she is saying because she is having a crisis moment. When she is like this, we outline what needs to happen but give her choices on how it will happen. She keeps some control, but the end result is the same. We have learned to pick our fights. She has to take her medication, so that is a fight. She doesn’t have to change out of her Pyjamas if she doesn’t want to – as far as I’m concerned she can stay in the same pair until they develop legs and crawl off her! If she wants food at 10 o’clock at night, she can eat an entire buffet. All this said, it is really important to be able to tell the difference between when she is anxious and when she is just being plain difficult. I know the difference and am trying to remain loyal to the core values that we deem important. It’s important not to let everything go and not to get wrapped up in the parent guilt and outpouring of love that you have for them. When she gets through this, she still has to function as a decent human being and speak to people in a acceptable way. If she gets everything she wants, when she wants it, she won’t learn that she has to wait for things or to ask politely for what she wants. It’s really hard to be strong, but we have to. Cancer or no cancer, all parents want their children to become decent human beings and keeping that at the forefront of your mind is important. When we get out of the other side of this, she still needs to be nice!
  7. Don’t plan anything, ever. One minute everything is fine and the next you can be on your way to hospital for a transfusion or chemotherapy might take longer than you thought and you end up staying in for a few extra days. Other days you might plan on going out but Eleri can wake up and feel too poorly to go anywhere. We live our life day by day. It’s not forever, but it is our present.
  8. Nursing – Nursing a child with cancer is a full time job. There are elements of said nursing that were not on the list when I signed up to being a mum. For example administering an enema (back to poo) or cleaning dead skin off toes that have been in a cast for weeks – lush. There are also hospital trips, physiotherapy, administering medication and checking temperatures regularly. The thermometer is now my best friend and I’m obsessed checking how hot she might or might not be. Nursing can also be difficult when there is a preferred parent; that parent ends up providing most of the care and becomes the focus of the anger. When the anger becomes too much for that parent to take, it is so important to take a step back. In our case, that parent is me and when I need a break Eleri becomes very upset. It took a long time for me to realise that even if she is upset, there are others that can take care of her and it’s ok for me have some time for myself to regroup. In fact, I have learned he hard way that it is extremely important to take some time. In the first few weeks I couldn’t and wouldn’t leave her side. I was exhausted, irritable and short with everyone around me. A negative atmosphere instantly feeds Eleri’s mood and makes her more unsettled. Stepping back was necessary for everyone to regain control of their emotions and support eleri when she is anxious. Always give yourself time.
  9. Don’t judge other parents, ever. I like to think that I’m a no judgement parent. I’m the sort that feels for the mother who’s three children are all screaming while she is trying to get the family shop done in Tesco, rather than tutting and moaning about the noise or the ‘lack of discipline’. I’m a ‘parent’s parent’. I believe that all parents should be supported and not judged because it is bloody hard bringing up children. It is harder when your child has cancer. They have more meltdowns and they are almost always in public. When we first started coming into hospital and Eleri was screaming at the staff, I felt awful. I thought that everyone was blaming us for not being able to control our daughter. Actually, it’s the exact opposite. All the parents on the ward have had to deal with behaviour of some form of another and nobody even looks twice at a screaming seven year old. No one is judging you for giving your child the iPad to watch ‘The Greatest Showman’ on loop or unboxing clips on YouTube. They have all been there and feel your pain. The parents, doctors and nurses all said she would settle down. I couldn’t believe it at the time, but she has. Things will always get better and staying open minded until you do will help you though. Support and love is what we should offer all parents, not judgement and chastisement. Love and support the adults and they will be better placed to love and support their child.

In all of this it’s hard not to lose you – to lose your sense of self. When I became a parent, I found that I had to develop a new identity, one that balanced me as a person and me as a mother. I feel like parenting a child with cancer has pushed me to change my psyche again. I think in the first few weeks after diagnosis parents become so focused on getting their child well that they can forget who they are and what makes them happy – know I did. We had such a tumultuous start to our journey that it became almost impossible to maintain my sense of self or to remember what makes me happy as an individual not just as a mother/wife/carer. This is going to sound silly, but what added to this as the beginning was having my hair cut. I wanted to donate my hair to The Little Princess Trust and be supportive of Eleri cutting her hair. Not only did I cut my hair shorter than it had been in almost 20 years, I also had it dyed darker so I didn’t have to keep going back and forth to the salon for maintenance. When I looked in the mirror I didn’t recognise myself or my situation for weeks. It added to to my sense that Eleri’s cancer and everything around me was somehow unreal – I also hated it which didn’t help either. (Important note here – if you are in the swing of a family crisis don’t make it worse for yourself by chopping your hair off, it does not help the mind!).

Being in hospital with Eleri has meant having to build a whole new routine that supports her, but doesn’t necessarily support me, Rob or Owen. It’s a balance we are still trying to find. With her now settling into a more standard treatment pattern, it should be easier and more settling for us as a family. I am starting to feel more like me. My hair is getting longer and curly again (thank the lord!) and we have all spent more time at home. I managed two yoga classes last week and had my nails done! I have been able to cook and Rob is starting to exercise again. Owen has had both is parents back for more than a night and has stopped screaming at everything. We are building a new normality for ourselves as a family, as individuals and as parents. All we can do is keep going and see where it leads.

4 thoughts on “That’s not in the manual!

  1. I love your honesty Bethan!!! You are one very loving mum and do your very best for you family! Big hugs and best wishes sent to you all x

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  2. You say it how it is and from your heart. I have never met you or your beautiful family but reading your blogs I feel as if I do! Stay strong as I know you all are.
    Much love and gentle warm cuddles for Eleri.
    My prayers are for you all. Thank you for sharing your journey
    God bless xxxx

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  3. Another really honest and excellent read. I hope writing this also helps your sense of self. It really is a brilliant account of such a strange time for you all.

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