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Life with Leukaemia: 'The change Isla has had to adjust to this year, seeing her daddy so poorly and handling it not with fear but with love and gentleness, has made me the proudest mum imaginable'

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A Bishop's Stortford family's ongoing story of navigating the emotional, physical and financial challenges of living with blood cancer, by Amy Gannon...

This week was Isla’s last week of term at school, her last week in reception. Somehow, we have got through a whole school year.

The change she has had to adjust to throughout this year, seeing her daddy so poorly and handling it not with fear but with love and gentleness, has made me the proudest mum imaginable.

Isla's last week in reception class at Summercroft Primary School (58144091)
Isla's last week in reception class at Summercroft Primary School (58144091)

School has been more to Isla than a place to learn and see her friends – it’s been her one constant. A place she can go that remains the same, with fantastic teachers who can answer her endless questions, and a place untouched by the stress that comes with living life alongside cancer.

At times we have had to pull her away from this environment, when we have had to shield when Joel’s blood counts are low, and that has been hard to do. Pangs of guilt at the disruption to her little life have sometimes been crippling, but we must all make certain sacrifices to keep Joel healthy.

Isla attending school brings with it stresses. While the early-years setting is a place where imaginations thrive and the building blocks of little ones’ knowledge are first built, it is also a hotbed for germs – for bugs and viruses that I suppose every parent dreads having to deal with, but for our household it brings with it a whole new level of threat.

Joel’s immune system is compromised whenever he is on chemotherapy and it isn’t the strongest, because of the type of cancer he has, even when he is off treatments. So, I have spent the year torn between wanting Isla to build up her immunity and not wanting Joel to have to return to hospital because his immunity has been put to a test it cannot pass.

With every outbreak of chickenpox, Covid or tummy bug we were on edge. We knew if something hit our household we would have to separate so Joel could remain safe and have the best chance at avoiding illness that would be dangerous for an immuno-compromised person to catch. For people living with someone undergoing chemotherapy, you can get your child immunised against the chickenpox should you choose to.

Joel has two flu jabs a year to protect him from the different seasonal flus circulating and he is fully boosted against Covid-19. If you are living with cancer, make sure you are aware of the boosters and vaccinations you are entitled to via your oncologist or specialist nurse. There are lots of resources on Cancer Research UK’s website.

Joel takes his temperature morning and night every day so we can identify infection in the early stages, and we have an emergency number to ring if his temperature rises above 37.5C. There are steps we can follow to give us the best shot at keeping him safe.

Blood cancer symptoms (58144103)
Blood cancer symptoms (58144103)

This week, when I did a lateral flow, I saw the dreaded two red lines and knew it was time, yet again, that we had to separate. Joel and Isla managed to escape to his mum’s house and remain negative.

I’ve tried to maintain a positive mental attitude the whole way through our cancer journey. I truly believe we can get through anything as long as we are together. I’ve been the driving force of our belief, of believing we can smash and defy all the odds. A positive mental attitude does more than keep your head above the water – being negative can shut your body down.

Stress can bring you bad health. I’ve always looked on the bright side, even when it’s been hard to see. Now I’ve tested positive for Covid, it’s filled me with negativity and anger. I hate being separated from Joel and Isla; I’m so fed up of our family being apart. And whilst this might seem like a little blip in our long journey, it’s knocked me right down.

I continue to isolate, eagerly awaiting a time when I test negative so Joel and Isla can safely return. Whilst I know I am free in the eyes of Government guidance to go about my daily business, I choose to stay home – you never know who is in the waiting room with you, who is shopping near you, a carer, a cancer patient, a doctor. I don’t want to spread this virus to someone who cannot fight it.

In brighter news, our wedding is booked for August and it’s wonderfully exciting to have something to look forward to in these testing times. It’s important when facing the relentlessness of cancer to allow yourself some time to look forward to, no matter how small that may be. Being future focused pushes you forward through the hardest of times.

Sun safety tips from Blood Cancer UK (58144093)
Sun safety tips from Blood Cancer UK (58144093)

Summer brings with it more opportunities to safely socialise outside and I hope everyone in the cancer community is able to make the most of summer in a safe way.

There are many people in our community whose lives have been affected by cancer and I think it’s important to talk about the issues faced, to normalise asking questions about cancer to spread awareness and decrease the fear surrounding this illness.

As a new week begins, we count our blessings and try to remain positive. On the bad days I allow myself to feel all the anger and sadness that comes and remind myself tomorrow is a new day and I’m endlessly grateful we get to face it together.

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