Cleaning the house, walking the dog and drinking strawberry based cocktails in a Hawaiian bar. All typical things a 32 year old woman does in her day to day life, the things Jodie Johnson does. But last year, Jodie was given the diagnosis to change her life in more ways than she could imagine.
Just under a year ago, Jodie from Wigston in Leicestershirewas admitted to hospital with suspected DVT (deep vein thrombosis) in her groin after experiencing pain in her groin and stomach, but the prediction couldn’t be further from the truth. The reality of the diagnosis was far more hard-hitting, the word no-one wants to hear. Cancer.
“My oncologist literally sat there and said ‘Miss Johnson you have three months to live if you choose to do nothing but if you try this new trial of chemo, which is very aggressive and may make you very poorly, you may have a maximum of 3-5 years’.”
Jodie was diagnosed with Leiomyosarcoma of her main artery and liver in April 2013, an incredibly rare form of cancer where traditional chemotherapy has been proven non-effective.
“He then sat there looking at me, expecting me to run for the injection and get started there and then. Jaw- floor, world- gone.”
When asking a person how they feel about being diagnosed with such a serious illness, you expect negativity and emotion. However, Jodie brings a smile and the truth. No sugar-coating.
“I felt like my whole life was over” she said “If you imagine the worst thing that could happen to you-just as your average Joe- then times that by one million, that’s the feeling.
“I was very clever at hiding it. I had a cry at the hospital then pulled myself together and told everyone. Firmly to the point, job done.”
The worst feeling she fears in the present day is hypochondria, a headache brings worry that the cancer has spread to her brain and a sore tummy, the same fear. Although Jodie says this is probably just wind.
“I’d love to say that it’s changed my life and I now see the beauty in everything blah blah blah. But generally, I think the people that say that are kidding themselves into wanting change. I still wash up every night, I still hoover after the dog every day, go to work, make the bed and do washing.”
“I’m slightly impatient with people who won’t open their minds to the possibility that the cancer doesn’t have to be treated the way the doctor tells you.”
After hearing about a woman with the same illness who had been receiving a new treatment for the past ten years but is still healthy, Jodie wanted to know more. After researching the treatment, she had made up her mind. Traditional chemotherapy wasn’t her style.
The treatment Jodie is currently receiving in Germany, knownas TACE (trans-arterial chemoembolization) is where a very thin wire is inserted into the main artery into the groin and then directly to the tumour, small beads are left behind stopping the chemo from coming out. Chemo is then pumped into the middle of the tumour, killing it inside out.
“Traditional isn’t always best. There’s less side effects, I’m not bald, painful for a few days but generally in good health after.”
Having to deal with such a serious illness is bound to have an effect on a person’s relationship with friends and family, sometimes good and sometimes bad. Living in Leicester with partner of two years Gareth and having her family close by is a great comfort to Jodie to have so many loved ones around.
“I’ve seen who my friends are. Some have stepped up and made efforts beyond what I could ever expect, some have ran away.”
“I sometimes feel like they are waiting for bad news but praying for good. I talk to my sisters a lot and do things with their kids and just smile.
“Then there’s Gareth, my rock. He’s stepped up in a way I never thought he even could. I’m so thankful I have the love, the support and the health to carry on.”
Being with Gareth, 31, has made Jodie realise just how much he means to her during this difficult time.
“I couldn’t be half as strong in all this without him pushing me uphill.”
Jodie often jokes about her cancer, about dying, and tries to make sure she does things that make her happy rather than others. She thankfully doesn’t have the luxury of having people around her to make her feel low and admits that if she steps out of line, receives a ‘good dose of get over it’.
“Daily, I try to spread the word about my cancer as it is so rare. I’ve joined a group that I can vent any anger and frustration on and I just try to get through most days thankful I’m still here.”
Last year Jodie went to Disneyland with partner Gareth. With the biggest of smiles on her face, she says how it was the most magical place in the world and the way it made you feel like you could live there forever and never get bored. How life for two weeks was perfect.
“Gareth and I had an experience we may never get again. A chance to be us, for two weeks we messed around, ate too much crap and laughed harder than we thought we could.
“Cancer wasn’t in the way, day to day life wasn’t in the way and life revolved around what vest to wear, what sun factor we needed and which gross lunch we’ll eat there.”
When asked to give one piece of information to people suffering with the same illness, she says that now is the time to fully enjoy what you can and as hard as it is, try not to worry.
“Join a support group, it’s invaluable for your sanity even if you think you don’t need it.”
Jodie has proven to herself and others just how strong she is and that this illness isn’t just about negativity, you can still drink over-priced cocktails and look beautiful whilst doing it.
Jodie is a part of Sarcoma UK and JJ’s Sunshine Fund, donations welcome.
Ellie Pratt.
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