My name is Lorraine Lewis and together with my husband Lee Lewis, we run a charity based in Northampton called The Lewis Foundation.
Every Friday we hand out free gift bags to adults with cancer in Northampton General Hospital. The gift bags go to day patients and overnight stay patients. The patients can choose from a choice of 12 gift bags, which ranges from portable radios, magazines, craft packs and pamper packs. The aim is to take their mind off thinking about cancer and give them something nice to look forward to. It is also to reduce social isolation by spending time talking with the patient once they have received the gift bag.
We spent a lot of time on Talbot Butler Ward when my mother in law was receiving treatment for non – hodgkins lymphoma cancer. We noticed what a lonely place a hospital ward could be. We first started off helping by fundraising to buy TV and DVD players for the private rooms on the ward. It really bugged us that people had to pay £10 per day or £35 a week to watch TV. We used to smuggle in a TV because it was something that we just couldn’t afford.
So, I decided to spend 2 years fundraising to pay for 14 TV and DVD players. I did Tough Mudder and Rat Race Dirty Weekend in 2014 and 2015. They were one of the biggest challenges I have ever done, but to get me through I reminded myself about what I needed to achieve. I raised enough to purchase 14 TV and DVD players, which are still being used today. Nothing makes me happier when I see people watching them with the other TV’s pushed to the side.
However, we both thought we needed to do something on a long term basis and more personalised. This is how we noticed how difficult it was for people financially, physically and emotionally and we wanted to do something about it. Whilst in the hospital we heard things people needed such as a crossword book, some toiletries or something to read. We know how these items now become luxury items because you can no longer afford to work to pay for them. That is why we introduced the gift bags.
Since we started in April 2016, we have given out over 1500 gift bags to people within Northamptonshire.
Below are all five individual vlogs breaking down the letters S, P, A, C and E and exploring what they stand for within the community of cancer survivors and patients trying to nurture themselves and move forward after a diagnosis.
When you first hold that little bundle of wrinkled skin and shrivelled gorgeousness, in your arms, your life changes in the blink of an eye. Your carefree days of only having to worry about yourself are gone, your time is no longer your own. You are a mum. You are responsible for another life and the kisses of love and adoration that you pepper incessantly over that tiny head, are full of promises and dreams.
Eighteen months after I gave birth to our daughter, I sat in my doctors waiting room, wishing someone would take me in their arms, swaddle me in a blanket and kiss my head with promises while my dreams whirled around me like some kind of tornado.
I had been diagnosed with a hormonally receptive breast cancer for a second time. Not only did I have a husband this time around but I had a daughter, and the thought process that went with that minor detail made for a completely different thought process than it had before, seven years previously, in my twenties, when the most important thing to worry about had been whether to have white wine or red wine with dinner!
The plates we spin as mums are many; kids, routine, family, lifestyle, work, relationships, but when we are given the almighty serving dish of a cancer diagnosis to spin alongside, it takes so much of our attention to keep it spinning, that we can often find ourselves watching on while the other plates wobble to a lazy end and then crash to the ground.
A mothers love is a powerful thing but when I saw her toddling towards me on my return from that awful appointment, I felt totally helpless. What did this mean for her? How would we explain this to her? Who would look after her while I went to all my appointments? How much of her life would I be around for now? How was I going to cope with her energy? Does this mean she might be at risk?
As we processed everything, I put her to the top of my list. I wanted to protect her and I didn’t want her to notice anything different, but as details began to emerge of the treatment plan, I realised that her routine would be affected and we needed to manage that. Communication was key, but how do you tell a nearly two year old? How do you tell any child you, or a member of your family, have Cancer?
In this case, we kept it simple and related it to the global pink phenomenon that was then Peppa Pig. In all his glory Doctor Brown Bear stepped up to the mark and we told her that Mummy had an ‘ouch’ and would have to have daily visits with Doctor Brown Bear to make it better (though she looked understandably put out as to why she wasn’t invited too!)
But when, another eighteen months later, I had a third diagnosis, words failed me, never mind finding more to explain to a three year old. A child’s world is only as big as they are, their scale of reference is relative to their age, so the complexities of explaining to them something that is so often associated with death, becomes one huge scary issue!
My daughter was very young on both occasions, so we could just about manage the language and wave of questions that were fired at us like bullets, as we muddled through treatment and surgeries, but I was aware that she became clingy, a bit tearful and though generally happy and her normal outgoing self around others, the mothers guilt feasted and leapt upon these minor fluctuations, and self doubt and vulnerability caused my confidence as a mother to crash.
The hardest part for me was the huge black cloud that is the ongoing state of my fertility. A four year old’s radar for different family structures asserts itself considerably and when the question i feared the most was suddenly vocalised, it felt like a bomb exploding. The pain and the gut wrenching twist of my stomach, totally floored me, ‘Mummy, when will I have a baby sister or brother?’
Trying to keep language simple and not dissolve into a puddle is hard. We can’t predict their questions, we can’t guess what they will say next. So how do we manage issues such as the change in our appearance and hair loss, with older children? How do we tackle the sometimes debilitating fatigue and side effects of radiotherapy and chemotherapy? Or, as in my case, how do we start a dialogue with children post cancer, and discuss the far reaching side effects on ourselves and our families? After my own experiences and talking to so many other patients and survivors who are also, first and foremost, Mums, I realised that the support for us, as a group, is not as accessible as it should be. When the darker and more intense issues surface and we are still spinning all those plates, who do we go to? We push the panic deeper down inside us. Oh for that darned instruction manual!
Our children are individuals too. They may open up and confide in us or another member of the family, but they may also turn inwards and become guarded and defensive. If we focus on Cancer as a thing are we overwhelming them with issues of mortality? If we don’t, how can we control what their friends and outside influences tell them? Our mummy minds are a hot house of contradictions and once again we feel helpless to the things we can not control! The unknown is a scary place and as mothers, we will always claim that responsibility to protect them from anything that may jeopardise their innocence.
Parenting Support and Samspaces recognise all of these concerns and complexities and are collaborating to offer a series of workshops to support and nurture these feelings and concerns. With tools, tips and models that have worked effectively in other tough parenting areas (divorce, separation and siblings with special needs) our aim is to provide a safe and honest space for mums affected by cancer, directly or indirectly (it could be another close member of the family,male or female) to discuss what it is we need to feel calmer and more productive, what we can do to support ourselves and our children in a more positive way as well as discussing how we can move forward while creating a new family normal. Perhaps, together, we can implement small changes and take slow, baby steps; like taking ten minutes each day to allow ourselves to separate from that intensity and play, interact and engage with our children, creating a more positive environment for them, while offering a safe space where things are familiar again.
In light of everything, I am so proud of the girl my daughter is becoming. She may push us to the edge with her insanely early wake up calls, but she is her own amazing person. Recently, when I tried to explain to her, what Cancer was, now she is older, she told me, quite adamantly, that Alzheimer’s is way worse than Cancer because Great Granny has that! I realised that in her world, Cancer can’t be that bad because I look fine, however Great Granny is slightly less fine! Kids are clever, they pick up on everything but whether two or eight, I am proud she has seen that a mother can be strong, brave and honest and if she grows up knowing nothing else, I want her to know,
‘A mothers love for her child is like nothing else in the world. It knows no law, no pity, it dares all things and crushes down remorselessly all that stands in its path’ – Agatha Christie.
And that, my darling, includes Cancer! x
To reserve your spot on the first FREE workshop on June 6th 2017 click here;
I can’t say I am all that sure about sitting in front of my phone and videoing myself! Who is? But, I wanted to do a series of vlogs, face to face, explaining what SPACE means to me and why it has been such an important concept for me during cancer treatment and survivorship and the background to why I set up Samspaces and A Daily Space.
Talking to anyone affected by cancer is a personal and sometimes uncomfortable experience but it is something I feel passionately about. I want this community to know who I am, what I have been through and why I am doing what I am doing.
Check out the overview of the five vlogs I published on my You Tube channel in May 2017 where I discuss the analogy of the word and look at what each letter means to me.
“I’m sorry to say Mr Blair, but you have a brain tumour. It’s the size of a large egg, and we are going to aim to operate, perhaps some radiotherapy, chemotherapy, but if theres nothing else we can do, we will just keep you comfortable.”
As my husband was given those words I felt myself sinking into the floor. The world seemed to go slowly as I looked up at his Mum, perhaps expecting to catch her, but she just looked white. I looked to Ross, he seemed shocked, but calm.
That’s Ross though and there really wasn’t anything more to say.
That was the beginning.
He had been having headaches for a few weeks, had been going through depression and mood swings, but we had a new baby and we put it down to that.
Ross’ Mum, Dionne and I drove home without him and the car was eerily silent. No words could express what we were feeling.
Pure shock and fear. Deep, deep fear.
Getting back to my house we were met with Matty, Ross’s younger brother (who had been babysitting my two girls, while we had gone into hospital) he asked if everything was OK and his Mum told him the news. We just hugged and cried. Terrified.
Matty and Dionne left to go and see his sister and for a short time I was alone.
I phoned my parents and sister and delivering the news to others made me sob. What was happening? He had gone in with headaches!
The truth is, I new it was going to be bad, I never for one second thought it would be this, but I knew something was going on, something bigger.
I phoned my agent and left her a voice message. As a TV actress I had just finished filming BBC Casualty and had booked a film. I wanted to let her know that couldn’t happen, I just wanted to tie up loose ends, be present in what was happening.
I looked around at my house and I wondered what it all meant.
What would happen with us? The girls? How would I cope with this?
Nothing seemed to make sense and there was no answers.
I am an extremely positive person and I just knew I had to focus on one foot in front of the other, one step at a time. Clear everything, seek help from those around us and be there for Ross emotionally.
We have an extremely good bunch of people around us and over the coming weeks (with Ross’ instruction) a schedule was put together and everyone took turns having the girls. We wanted to make sure they didn’t get embroiled in any of it.
Brooke was about 3 years and Texas 1, so they couldn’t really understand, but I knew they would sense something if they were around us.
Everyone chipped in, they took so much pressure off us and those that did that will always have a place in my heart. The girls nursery, lead by the owner Steph, took the girls for months, free of charge. That is the good in the world, that is humanity.
Someone from America contacted me in the early days and we spoke online. This lady had grade 3 brain cancer and she was very pragmatic about it all. She gave me the advice “This can still be your life, it will be brain cancer life now, but it doesn’t have to define you”
This stuck with me and as an advanced practitioner of The Law of Attraction and someone who knows that what you focus your mind on, you bring into your reality, I practiced what I preached.
When people tried to tell me how horrendous chemo was going to be for Ross, I said “He will be fine, we will focus on that when it’s here”
People mean well, but they often impart their own fears onto you and that just wasn’t how this was going to run. Some may see that as naive, but you’re wrong. Ross hasn’t read a single thing online, or otherwise into brain cancer, chemo, radiotherapy, brain surgery and because of this he doesn’t know what he is supposed to feel, he just feels it if it’s there.
He has been remarkable. Two brains surgeries, chemo, radio, seizures, doctors poking and prodding, having his driving licence taken off him. He has defied what people said.
He has left intense chemotherapy to go and play football, or ride his bike. He would go into chemo and say, “shall I breeze this one?” and I would, of course, tell him “yeah, do it! Why not?”
You will never hear Ross say “This is a nightmare” or “why me?”
Quite the opposite, you will hear him say “Why not me? None of us are immune, it’s just science” or “I’m bored if it now, it’s gone anyway” “They keep telling me I’ve got cancer, but I can’t feel it!”
He is never a victim, WE are not victims.
As the partner of someone going through stuff it can sometimes feel like you are watching a movie you cannot do anything about. You feel frustrated for them, want to take away any pain, but yet you are left to watch. I had to learn to let go of trying to control Ross. I wanted to tell him what to eat, what he could and couldn’t do.
I was scared, there is so much information out there (often conflicting) and I just wanted him to be OK. You have to let your loved one make decisions or you will find your relationship will shift.
It does shift naturally anyway, as the partner, or carer you take on roles you didn’t have before. Believe me, I was not chief driver in our house and I don’t relish in it now. At the beginning everything was down to me and although we have tremendous support, it felt alien.
Nearly 3 years into his diagnosis and he is currently having chemo again, you wouldn’t know there was anything going on in his body. It’s hard to imagine what we have been told is reality, so we live like it’s not.
It’s not our reality right now and we live with hope. We are very realistic people, we know its not an easy one, but we try to live in an authentic way and mix practical (doing a will and power of attorney etc) with living our normal life and hoping for the best.
It’s the letting go and the fear that stops most, but the reality is that MANY people LIVE with cancer. It isn’t free of cancer, or death. It’s upkeep, its appointments, but in-between you live.
The advice I could give to others going through this is to block out negativity, focus on your loved ones and being as normal as possible, don’t try and force new ideas onto them and find time for you.
You are useless if you go down. You have to have time out and it’s a good idea to let people know you don’t want to talk about cancer all of the time (or people REALLY will)
Remember cancer isn’t personal, it doesn’t ‘only happen to the good ones’, you don’t have to be defined by this, in fact there can be positives to come out of it.
Strengthening your bond with your loved one
Seeing the wonderful side of humanity in the nurses, doctors and others around you that offer help.
The strength that you can find within you will stay with you forever. You learn compassion and empathy for others and a deeper understanding of whats important.
I had no experience of cancer before Ross and no real understanding of the impact it has, now I know that people’s lives get shook up and rung out and I want to help.
My approach isn’t for everyone though, I’m pretty straight talking, no bullshit and will not have negative chitter chatter. Say to yourself everyday “I will work this out” and get on with you day.
I have been thoroughly changed by Ross’s cancer diagnosis and I am not the person I was 3 years ago. I have seen and learnt things that will stay with me now forever and I am very strong.
As a carer, or someone close to someone with cancer, I am on your side, I am holding your hand, I alright there with you, I know, I KNOW and you are not alone.
Sending strength and love to all.
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