On June 24th 2015, life changed as we knew it. That was our very own D day- diagnosis day. The day the world came crashing down, the day our lives changed, the day I changed.
Beth’s sarcoma brought feelings and emotions into our lives that no family should have to endure. Watching your child, your daughter, your best friend, struggling through day after day of brutal draconian treatments evokes unbearable pain within yourself. Your inability to help them, knowing you can do very little but watch them suffer hits you harder than you ever felt possible.
When Beth became ill friends rallied around offering their services and support. The shock hits them too. Initially I would be inundated with messages from sympathetic friends and family, which whilst overwhelming were all needed, our importance to them confirmed. Slowly but surely that support dwindled, until only a small trickle of support came through, eventually reducing to a drip. The friends I thought were true and loyal are now nowhere to be seen, but thankfully a handful have stuck like superglue. For those few I will be eternally grateful for their unwavering support; it has kept me going.
I have received messages from those I was once close to apologising for being such a poor friend, offering me that glimmer of hope that they were back, only to be followed up with silence. I sent out messages to friends saying how isolated and lonely I was feeling, asking them to please keep messaging me. This worked for a while but not for long. I thought often that maybe it was my own fault for not being proactive in maintaining my presence around them, but how could I when my beautiful 23 year old baby needed me and I needed to be with her? How could I feed their need for my attention when my daughter was vomiting, her hair was falling out, she was urinating blood, screaming in agony as her bowel obstructed or fighting for her very survival when infection struck? They will say ‘I didn’t know’, ‘You didn’t say’; I would say ‘You didn’t ask’.
This sounds like I’m angry with them all. Well, I have to be honest and admit I was angry, furious and very bitter, but now I just feel sad; sad this is yet another thing sarcoma has stolen from us.
During Beth’s treatment, for the first time in my life, I experienced panic attacks. This was a new and quite frankly frightening experience. Eleven years ago I was treated for breast cancer and as part of my treatment had 6 rounds of chemotherapy. I thought my memory of this sat comfortably in my psyche, how wrong I was.
One morning whilst Beth was in an appointment I walked quite calmly to the chemo unit just to say ‘hello’. Within seconds of being there I knew something was wrong, very wrong. The memories of my own chemo crashed around me, my fear for Beth of what was to come for her swept over me and the walls started caving in. I knew I needed to get away… somehow and I don’t know how, I managed to get to the toilet, locked myself in and collapsed onto the floor. Tears were streaming down my face, I was hyperventilating and sweating profusely. I was lucky that I recognised what was happening to me and I was able to calm my breathing down and clear my very fuzzy head. I emerged looking as if nothing had ever happened, as cool as a cucumber, composed and ready for action. I’m Beth’s mum and I’m strong, at least that’s the image I needed and wanted to portray; my game face, my mask back in place.
My next attack came in our local supermarket, a terrible event sparked this one off. For people who know me they would expect something pretty drastic to send me into panic mode. Well I will let you into a little secret, it doesn’t have to be massive, it doesn’t even have to be something you would take note of on a regular day. It can be anything. This time it was simply because there was a queue at the free coffee machine and someone had stepped in front of me in the line. That was it. That momentous event was enough to send me into free fall and I knew I just needed to get out of there asap. It astounds me that I was able to walk out of a supermarket I have been shopping in for over twenty years with tears rolling down my face; that not one person cared enough to help me, to check I was okay, to do anything at all. Well to all those people who looked the other way, I did get home safely. Yes, I was in a mess and yes, it would have helped if you had cared even just a little; thank you for asking, thank you for seeing me.
Another attack happened at a local garden centre where I was meeting friends for lunch. When I arrived no one was to be seen apart from the hordes of unknown people sitting at tables. I got a text to say the venue had changed to another area of the centre… that was all it took. That was enough to set me off again and had it not been for one of my friends who noticed me and took care of me I would have fled the scene instead of staying for lunch. Even with their support and encouragement, it was all I could manage to stay on the periphery keeping quiet.
I have had more attacks but thankfully the number is small. More will probably happen and I try my best to not think about when those moments may strike.
I have been called many things over the years. At school the pupils were geniuses and would rhyme my maiden name of Gagg with a particularly lovely word. Let me give you a clue: it starts with an ‘s’ and ends with a ‘g’ and has two letters in between… go on, think now – you got it? That particular gem must have been difficult for them to come up with! Now that Beth has a sarcoma diagnosis the words used are glowing, quite the improvement upon my previous, clearly loose, teenage years! I am now brave, inspirational and the best mum ever. I would like to think that I was all these things before, but for some reason it was never ever mentioned until now. But honestly, I really don’t feel that these adjectives apply. I have no choice to do what I do; would you run away from your sick child and leave them suffering? What is brave about doing my job as a mum? We don’t just sign up for the sports days, graduations or seeing them ride their bike for the first time.
I sat up watching her all night during chemo, I rushed out in the middle of the night and got to the hospital asap whenever she felt there was something very wrong. I fought her corner when she was too ill to do it for herself. I was and I am prepared to go to any lengths to keep her safe. This doesn’t make me brave, this is my job and no one else can do as good a job for my Beth as me. I’m her mum and I love her and that’s it, that’s enough.
I know many, many oncology mums and each and every one of us do the same for our kids. We can’t all be the best mum ever, but each of us are the best mum for our own children. We know our own children better than anyone, and we will fight tooth and nail to get the best for them, not giving a rat’s ass who we upset in the process. I have shouted and stamped my feet to be heard. On one occasion a doctor was very pissed at me for questioning him but, hey, guess what, I was right and if we had left him to it Beth would have missed vital antibiotics. However because I kicked up a fuss arrangements were made to courier the meds over in the middle of the night from uclh to Stanmore.
Having to become and remain massively assertive and guarded is just another stress to add to the pile. Unfortunately, poor care for whatever reason is a common enough problem and means we arrive to every ward on high alert until we’ve sussed the staff out. There is no way we, as parents, will ever rest easy or even leave our babies under the care of nurses we don’t trust, who at the end of the day are mere strangers.
Don’t get me wrong, we can not thank the NHS enough, and the standard of care is excellent in most places; but not enough for the guard to ever be dropped fully as it only takes one mistake for our kids to become seriously ill.
During Beth’s lengthy and repeated admissions to various hospitals I would need to stay nearby. When she was at Stanmore I took up residence at the Premiere Inn. I have to say, Mr Lenny Henry, those beds really are bloody comfortable! This, as you can imagine, isn’t a cheap business but again there is no choice. We do what we have to do.
Luckily for us, when Beth was admitted to either the Royal Free or uclh I was able to stay in Paul’s House, a house owned by CLIC Sargent. CLIC Sargent is a charity that supports people with cancer up to the age of 24 years old and they own a house within a five minute walk of uclh. This facility is completely free of charge and an absolute godsend, without Paul’s House I really don’t know how we would’ve coped financially or mentally. Being close to Beth helped us both feel safer; I could be with her in a flash whenever she needed me.
The support CLIC Sargent have given us since Beth’s diagnosis has been phenomenal, not just financially but emotionally. Knowing someone who understands what you are going through helps so much. Beth was allocated a key worker called Kate when she transferred to uclh and she became our guardian angel. She would visit us on the wards, arrange accommodation and never failed to find me a room in Paul’s House, with the help of Eric, the amazing manager of the house. Paul’s House was a home away from home, and whilst it was isolating and lonely at times, staying there for extended periods of time was made all the easier by Eric, who would make home made cakes every week and leave them around the house for all the families there. His lemon cakes were the first thing Beth ate after weeks of being off her food during Infectiongate.
Kate would always have time for a chat and she would be there for me, not just Beth. She even came to our home to see how we were doing. September is Childhood Cancer Awareness Month (CCAM) and CLIC’s focus during this month is the emotional impact of cancer on parents. I am wholeheartedly supporting CLIC Sargent’s September CCAM campaign to raise awareness of this particular issue. If you are interested to read more on their campaign, you can find out more by clicking here. If you would like to know more about how it feels to be a parent of a child with cancer.
Metal health support for parents finding themselves in this situation is very patchy. I was offered it, particularly from Kate and some members of the sarcoma team, and looking back, for my own wellbeing I should have taken it. As parents often do though, I put Beth’s needs before my own and was too concerned about being able to get that mask back on after opening up and letting it slip. It was all I could do to keep ‘strong’ for Beth and I couldn’t afford to let myself crumble and not be able to pick myself back up again.
Although I was lucky and was offered it, I have many friends who have gone to their GP and had pills thrown at them or been told it is reactive and normal to be stressed. Of course it’s fucking normal but we still need help! It’s normal to get pregnant but you still need a midwife to get the bugger out safely; hair growth is normal but we still go to the hairdressers so that we don’t walk around looking like a sack of shit. I really don’t think it’s rocket science to realise that us parents need help for stress, depression or in many cases PTSD.
This whole lack of support makes it all worse. We fight constantly for our children and when we ask for help for ourselves, believe me when I say, it must be bad. Having a sick child is all consuming, so a parent asking for help and taking a moment for themselves is not something they take lightly. It shows how desperate they are. Although we may need professional help, our friends can still be a huge source of support too. Friends out there of parents with kids with cancer, you really can make a difference.
Here is a checklist of what you can do. It may sound patronising and condescending but it needs to be said:
- Take a long hard proper look at your friend and SEE them. Try to see behind the mask.
- Don’t ask what you can do, just do it. When I had my own cancer diagnosis a lovely friend took my kids from me for the day, after ignoring me saying I was fine. She gave me food for the day, returned the kids in the late evening with a banoffee pie. Perfect. My nursing friends sorted out loads of medical stuff so we didn’t have so many hospital trips. They don’t think they did a lot but they really did.
- Message your friend lots, but don’t necessarily expect a reply. Our silence doesn’t mean we don’t want to hear from you, it just means we don’t have the energy or time to reply. I have a few friends who messaged me every day, more or less, and it makes a massive difference. Ladies, you know who you are!
- Understand that we change the moment our kids are diagnosed. Expect us to talk about it a lot, it’s what’s in our lives, it’s all consuming. That will settle with time but be grateful it’s not happening to you and be patient.
- Don’t expect us to be the all-laughing, all-dancing creatures that we once were. There will be things in your life that change you so please don’t judge us. Again, be grateful it’s not you.
- Don’t say, ‘ I couldn’t do it’, when talking about looking after your child if they were sick. It’s a load of bollocks. Of course you would, unless of course you really are a very crappy parent. It doesn’t help us or make us feel good about ourselves, it just pisses us off.
- Know that it’s a very lonely existence having a child with cancer and it is very isolating. Many times I walked back to Paul’s house past pubs spilling over with laughing people without a care in the world. It’s crushing and it hammers home how everything has changed. It makes you pine for the pre cancer days. Neal and I lived apart for much of last year and it was bloody hard, for both of us. This goes back to messaging your friends; let them know they are still important and part of your life.
Remember the dads and brothers in this. All too often I get asked how Beth and I are but never Neal and Luke, yet they are suffering too. Ask Neal, ask Luke; they are struggling as well. And go directly to them, not just through me. They are here too. The diagnosis affects the whole family, including the grandparents. As I’ve mentioned the grand parents here’s giving a big shout out to mum and dad for all the doggy sitting! Ooh and those lovely pies. Hint hint.
- Don’t tell me you’ve been too busy to message, it takes a second. It’s total bullshit – we know, we may be struggling emotionally but we ain’t stupid.
- Never say you don’t know what to say, however hard it is for you to think of a sentence it’s harder for us.
- When we tell you things aren’t going too well please DO NOT say how fantastic your lives are. This happened numerous times to me. Of course I’m interested and I would love to know how your family is because I still care, but the moment to share is not when I’ve just said how scared I am and how ill Beth is. Seriously! Really! People, I shouldn’t have to tell you this!
- Visit people in hospital, this is good for all parties. Mostly this is welcome and if you’ve been in contact you’ll be able to judge whether it’s a good time.
- Ask questions, we don’t mind. We won’t break down in tears and even if we do then so what, it doesn’t matter.
- Be prepared that September is Glow Gold childhood cancer awareness month and I shall be sharing the shit out of every single post about it. Don’t ignore, unfollow me, unfriend me or scroll on down; all you have to do is read the posts and share them. That’s it, simple. You may learn something and also become a better friend and a better parent, one who knows what childhood cancer looks like.
- Please don’t tell us to be strong after we’ve told you how much we’re struggling as doing so shuts us down and makes us feel weak. Sometimes we don’t want to be strong and brave, sometimes we need to break down and cry, we WILL pick ourselves up and dust ourselves down but we need those moments. Friends should allow us to do this.
Sarcoma has been hard but it’s not all doom and gloom. I may have lost many of my friends since sarcoma entered our world, but I’ve made new ones. Our proton family are friends for life: I met the lovely Heather at Paul’s house and we bonded over a glass or two of rosé. We laughed so much at things the normal folk would cringe away from. Hey, it’s our humour now… we have our depression and stresses because of cancer and we sure as hell can have that dark laughter too.
I belong to the fabulous Facebook group, Parents of Kids With Cancer. The people in this group have become friends and a tremendous source of support and hilarity, although of course there has been and will be much sadness too. These friends have knowledge that would have many doctors quaking in their boots and are prepared to take on anyone who stands in their way when it comes to their children. I also belong to a Facebook group called the Sarcoma Alliance, through which I have made many good friends across the pond, one of whom we had the privilege of meeting and enjoyed lunch with.
The friends that are left, well they are the ones I want and need in my life. They are forever friends and will never be forgotten. There is a spectrum of friendships I have found through ill health: too many became quickly bored of the situation and we became old news; some did a little but hung on in there; others were relentless in their support. Those are the ones that I will be forever grateful for, they kept me sane and gave me the outlet I needed when I needed it.
I think I have also got the most awesome family too, we are so lucky we are so close and we have come through some very dark times still together. Family members who I am not close to have shown how family mattered and how much they care.
The fear we have of the sarcoma or the infection returning is very real and has to be faced daily. Every day it is there gnawing away at the back of my mind, trying to pervade my every thought. I remind myself at those times that Beth has no evidence of disease, no evidence of disease, no evidence of disease. Beth has no evidence of disease and is still here.
This fear will always stay with us. Every time Beth spikes a temperature, says her back feels strange or the nerve pain is bad there is a nagging doubt in the back of my mind. During the darkest moments it was impossible to think of the future, as Beth was getting sicker and thinner by the day. How could I think of next week, let alone next year, when we didn’t know what the next hour would bring. Dark thoughts enter your mind and it takes every ounce of your being to drive them away. Words hang in the air, remaining unspoken through fear that if they are uttered you may tempt fate. You hate yourself for thinking that it may happen but it’s impossible not to. I’m hoping you understand what I’m trying to say with those words as I just can’t bring myself to write them down.
These times are etched in my memory and flash back at me at any given moment, causing me to stop dead in my tracks and relive it again. All you can do when it gets unbearable is take it day by day, hour by hour or minute by minute if that’s all you can manage. We as a family were very lucky to be taken on by Mr Lordan, a sarcoma surgeon and god in our eyes, and Sophie, his clinical nurse specialist (goddess). They listened to us patiently day after day whilst we aired our distress and fears. Without these people I don’t know how we would’ve coped, as not once did their care falter and I feel we owe them Beth’s life.
Despite Beth’s relative health I know others aren’t so lucky with their own children’s treatment, and however fortunate and happy I am it will always be tempered by those not so lucky. We have friends who have lost their children and it’s all so wrong. It feels like we are sitting at the edge of a cliff. For now we are sitting on the right side, but we know how fragile that side is and the precipice we have stepped back from can become threateningly close once again
Although Beth for now is in remission and in the eyes of many people well, it doesn’t mean everything is hunky dory. The one thing I didn’t really appreciate before Beth’s illness was how much cancer impacts your ongoing life. Recently a friend asked when Beth’s next check up was so I told her:
- Appointment with her orthopaedic consultant in august
- Appointment with her spinal/neuro surgeon also in august
- Routine chest X-ray for her 3 monthly surveillance for lung metastasis. Every 3 months Beth needs this imaging done, which causes a lot of anxiety for us all as we are acutely aware of what a vile disease sarcoma is and how quickly it can spread. Following her X-ray she will see her sarcoma oncologist.
- Echocardiogram to check her heart hasn’t been damaged by the chemotherapy.
- Fertility follow up after chemo
- Check up with mr Lordan
She will also need numerous blood tests as she’s anaemic again and on the brink of needing another blood transfusion. And so although it may seem to many who have not been in close contact with us that we are well away from that cliff face, in reality we never stray far from the edge.
People think that once the shiny bald head has gone and the hair is back that all is well. If people stopped to ask they would know this is far from the truth. Beth still has a lot of ongoing problems, which are set to continue for the foreseeable future. This is when I remind myself that we are ‘lucky’ we still have Beth. Even so, I still see my daughter suffering with her pain, anxious about how she’s changed, continuing to think that she won’t have a long life. Seeing this is hard, it will always stay hard, so if you think I’ve changed then I hope this post helps you understand why.
I may seem different and I am: these days I find big social occasions difficult unless Neal, Beth or luke are with me; I prefer to stand at the back now; I don’t really want to dance anymore; I remove myself from idle gossip and bitching about others. Worrying about such insignificance is in my long distant past. I wonder if people find this change in me difficult when they’re around me; do they expect me to joke constantly, be a comedian, worry about the small stuff? It doesn’t matter what other people think though. I’ve changed, but this is me and I’m happy with the new me. I think I like me better now.
For anyone wanting to know more about Clic Sargent and all they do for families like our own, please click here.