Pawel and Klem on adjusting to life with a brain tumour

Klem

Pawel and I met studying in Krakow, Poland. 

We got married in 2006, moved to Essex a year later, and then settled in the Highlands. 

We enjoyed being a together as a couple for a while, before having our first son in 2021. Becoming a family of three has been a whole new adventure; our son Hugo is the sunshine of our lives.  

Pawel

One early morning, I was on my way to work on my scooter. It was very wet and when I hit the brake, I went straight over the handlebars and ended up on the tarmac. Nothing serious; torn trousers and a bruised ego.  

But the next day, I started fainting. Luckily, Klem took care of me straight away. But it happened again the next day, then the next. It began happening every day.  

The GP told me there was nothing wrong, but I kept fainting, so I kept going back, three or four times. I still kept fainting every day without warning, for months. 

Hugo was almost a year old when we took him to Poland to meet the whole family, where I continued fainting.

I'm blessed with an entire family of doctors who had been watching me like a hawk. A visit to see a neurologist for a full checkup, including an MRI, was arranged. 

The results of the MRI showed that I had a big brain tumour, with swelling in the brain already. I was advised not to go back to Scotland at the moment. 

I didn’t really record it properly the first time I was told this. Everything began happening very quickly and, just eight days later, they’d found space to do the operation. That was the day the seriousness hit me. A doctor came over to my bed with a piece of paper for me to sign, acknowledging I understood that the operation may result in losing my memory, or paralysis, or dying. I prepared a PowerPoint presentation for myself with images of the family and describing who who's, just in case. 

I’ll never forget having the anaesthetic mask put on me and wondering if the breath I took which put me to sleep would be my last one. Gladly, it wasn’t. 

My doctor in Poland was amazing. He was the first person who explained the nature of my tumour and how it had to grow to a certain size before showing symptoms. He told me I have an astrocytoma which is grade 2, a very slow growing tumour. 

Between my doctors in Poland and the hospital in Aberdeen, I was eventually able to move my treatment back to Scotland. I could go home and start learning how to live with cancer. 

Klem

I really don’t recommend having to arrange Power of Attorney at 11pm after putting your baby to bed.  

But at the same time, I knew Pawel finally had the care he needed. But still, diapers needed to be changed. Breakfasts needed to be served. I entered survival mode and became some sort of robot.   

We just needed to go, act, do – whatever needed to happen. 

I wouldn’t allow myself tears because they weren’t helpful at the time.

To this day, I don't think we know how to live with cancer, but we just live, we do it anyway.  

Pawel 

Friends and family try to help but they don't understand it. They are also terrified all the time, so I tend not to share everything. 

Until recently, I was having suicidal thoughts. It seemed inescapable. There is a shame around those thoughts and I didn’t have the ability to vent them or share them. 

But life has to continue, luckily, and this is precisely where Maggie's comes into play. My nurses told me they would look after the physical side of things, but if I wanted to talk to somebody I should go to Maggie’s. 

I started to understand that this was an element of my treatment I hadn’t addressed.

I began meeting regularly with Seonaid, who is incredibly knowledgeable about cancer, not just the psychological side.  

At the start, I couldn’t articulate myself properly. But she helped me put it into words. She asked me, which no one else had before, if I think about death.

I replied “I think about it 24/7, I’m afraid. How do I live with that?”  

Maggie’s became a hugely important place where I could talk about the darkest moments. 

Step by step, meeting by meeting, I was able to understand more and more how to find myself in this situation.  

The difference is that now I have Maggie's, where I can talk to someone who is an authority on the subject. 

Now I understand how much Maggie’s helps, I want everyone to know that it is available. 

Klem 

I have noticed that, in the past year, I have lost my tolerance for small talk and I have absolutely no patience for inspirational quotes.

In Maggie’s, I can have a quality conversation about what matters: practical things, the day to day.  

When we enter the building, the sheer quality of the air and the design is beautiful. When you enter, between the moments that somebody asks you ‘what would you like to drink?’ and being presented with a cup, something changes.

It's a pause in whatever you're going through. 

At Maggie’s, I found breathing space. 

Our roles have changed in this year, I am a wife and a mother. But now, I’m also a carer. Sometimes I forget to be a woman; I forget to be human. 

At Maggie’s, being able to speak to professionals who understand our situation has allowed us to have a conversation and start being two humans again. 

Outside these walls, I have to brave things. In here, I just am. 

Tumours are quite selfish. They take over because of their nature, they are the priority. 

Pawel’s has changed the way we operate as people and as a family. 

Pawel is the one with the tumour. But we are all living with it as a family unit. 

He was always very physical, he expected his body to run faster because it would, jump higher because it would. But now, getting up and going is harder.  

For instance, our two-year-old is a two-year-old. He runs around and he screams because that's how he expresses himself. What I learnt is that, from about 3pm, that affects Pawel more, and he's more vulnerable to harsh sounds. He needs to rest.  

At times, he comes across as cross. He's not cross with me, he's cross with his own tiredness.

So I needed to learn the cues for when he is tired. I need to qualify the behaviour, then I know which solution to apply.  

Pawel 

At Maggie’s, we spoke about better understanding each other's perspective. It helped me understand I don't have a monopoly for pain, or feeling tired.

Klem 

I needed to have that conversation with Pawel and tell him it's okay to be tired. You're tired because you're recovering from chemo, and you have a tumour. 

I am not judging. But I need to know so I can organise the family, my behaviour, adjust my expectations. I needed to be able to ask those questions with love and patience.

But to also allow myself for a human reaction and not beat myself with a stick if I raised my voice or lost my patience, because I do that. Because I do not have a tumour, but I also get tired.

A very strong selling point of Maggie’s is the practicality and knowledge of the trained professionals here. It helped us learn to talk to each other. 

Pawel 

When I got the diagnosis, I didn't know anything about life with a tumour. 

Maggie's was fantastic and helped me think certain things through before they happen because someone else has experienced the same thing.

You can talk to people who are super knowledgeable, with so much experience. It's a safe harbour.  

Here with you

If you, your family or friends need support during this time, please call us on 0300 123 180, email enquiries@maggies.org or book a time to visit us.

If you're already visiting the hospital, just come in.