Monday, 26 October 2015

Navigating Breast Cancer at 24

Today’s post is from one of our younger beneficiaries who has kindly agreed to share her story. Josephine, 26, from London suffered awful reactions to nearly all the treatments she underwent but has since found many complementary approaches to support her recovery.

I was diagnosed at 24 years old in the spring of 2014, May to be exact, following an operation to remove what they thought was something called an “Intraductal Papilloma”.

I initially found the lump on Valentine’s Day, or rather my partner did. It was a very small pea-size lump under my nipple. I made a GP appointment soon after and got referred to the breast unit at The Royal Free Hospital. They did a mammogram, ultrasound and biopsy and told me that I didn't have cancer but they wanted to remove the lump.

They told me I should celebrate! How wrong they were… and how sad it was, because I did celebrate and thought that would be the end of it.

On the surgery day I was then told they needed to “re-check the tissue”. Low and behold, two weeks later I was called in early and told that it was cancer; grade 2, invasive lobular carcinoma, highly oestrogen and progesterone positive.

They seemed to be as shocked as I was when they said it. I was on my own, my heart dropped, sound became muffled and I felt sick. I was immediately sent to an MRI machine. Luckily the hospital had an in-house breast cancer charity called Cancerkin so my surgeon sent the CEO down to sit with me.

After the MRI, which was horrible and loud, and left me feeling numb and frightened, they told me I also had areas of DCIS (early cancer) so a full mastectomy was the only way forward. I think the term my breast care nurse said was “we will be throwing everything at you” due to my young age and stage of the cancer.

The main tumour was located just under my nipple and was 37mm. I also had two lymph nodes removed, which had isolated tumour cells in them. I didn't have any other symptoms other than the lump, which came up after a few months on the contraceptive pill Cerazette, I read the leaflet and saw it was linked to breast cancer and immediately stopped taking it. I also had repetitive Costochondritis for 2 years and low vitamin D levels, both of which could have been warning signs.

It came at a horrible time. My dad had died only a few months prior, very rapidly, of liver cancer.

My regime would now consist of surgery, chemotherapy, radiotherapy and a prolonged hormone therapy regime. My life came to a halt and everything, from the minute I was diagnosed, became about trying not to die.

In June 2014 I had a full mastectomy on the left hand side, followed by a month to heal and an offer to preserve my eggs with IVF (which I didn't take up).  Then come August I would start my chemotherapy, which would go on till the end of the year, six cycles of FEC-T. After this, just before Christmas I started the hormone treatment - Tamoxifen as a daily tablet and Zoladex injections once a month. My new year began, this year, with 15 rounds of radiotherapy to the chest wall, Monday to Friday for three weeks.

Every single treatment I had went wrong somehow, it was horrendous. I felt butchered, poisoned, burnt and like I had been walking on the motorway getting hit by every car that went by.

Following my mastectomy I developed a haematoma and the pain was excruciating. I couldn't move and my chest puffed out with blood, which also overflowed my drains. I remember screaming and being carted off in the middle of the night back into surgery, I thought I was dying, and I damn well could have. Upon awaking I had to have blood transfusions all day, was bed-bound for three days, and was in hospital for a week thereafter.

The chemotherapy was the worst thing I have ever experienced, everything hurt, I felt like I had constant flu and all my hair had gone by the second cycle, eyelashes and eyebrows went later on. I was immediately allergic to the Taxane-based drugs and collapsed upon infusion, then was given an alternative that left me partially paralysed from the knees down for three weeks.

I developed persistent peripheral neuropathy, which I still have to cope with now. The chemotherapy was so intense that I had to stop one early because I felt my quality of life had reached zero and that one more infusion may just kill me.

Other than all the intense hot flushes and night sweats, the hormone therapy was much more tolerable, however, after my radiotherapy; they concluded I had a delayed allergic reaction to the Zoladex. My entire chest, including the non-radiated skin came up in a giant weeping painful burn and rash which left me housebound yet again, covered in paraffin for another month or so.

So they took me off the Zoladex and now I only take Tamoxifen. I have found that different brands can make the side effects worse or better, the expensive brands are the better ones – obviously.

All in all, it has been a very traumatising and deeply painful experience, which I never, ever, want to relive again. I am still coping with all the side effects of these treatments now and it has been over six months since I had hospital based treatments.

Aside from these treatments, I have made the most of the free complimentary therapies and exercise regimes offered by Cancerkin, The Haven and Marie Curie, which include: Reiki, Tai-Chi, Qi-Gong, Yoga, Pilates, Acupuncture, Cranio-sacral therapy, The Alexander Technique, Spiritual Healing, Shiatsu Massage, Reflexology, Mindfulness Practices, Nutritional Advice, and Herbal Medicine.

I also take a variety of herbal supplements, some of which were recommended to me, some of which I take from my own research. I have also tried to eat non-processed organic foods and make my own protein bars and such, as much as my finances will allow. I try to avoid soy and dairy where possible and anything with high levels of sugar. I am a vegetarian since birth and have been an on and off vegan for years at a time. I attempted the ketogenic diet but ended up just putting on lots of weight, which was the opposite of why I was doing it!

I have tried to bond with other cancer patients by going to Shine local meet-ups and activity holidays and am a member of several online support groups. I also began doing Hyperbaric Oxygen Therapy in the spring of this year.

Many of these approaches were things I had wanted to try or lifestyle changes I had wanted to make prior to my cancer, but I never had the money for them. So, it was nice to be able to try so many new things for free via an awful situation. Reiki I really took a shine too, as well as Yoga, Tai-Chi and Qi-Gong, all of which have been greatly helpful in reducing my stress levels.

The Hyperbaric Oxygen Therapy has been amazing, I didn't realise quite how fatigued I truly was because I had got used to it, until this treatment eradicated it almost instantaneously. Unfortunately I had to kind of stop and start (and still have to) because it brought about the first period I had had since I started the hormone therapy, which was very painful. It’s strange; I won’t have a period unless I have the therapy around the time I would usually be menstruating. A bizarre side-effect that I didn't anticipate but I can only see as a positive, as bar the pain it’s normal to have them!

I found out about Yes to Life after meeting a lovely woman at a class at the Haven, I bumped into her in Wholefoods afterwards and started speaking to her about the stress of wanting to eat right but not having the money to do so. She told me she had been applying for monthly funding awards with Yes to Life so she could support her recovery by buying organic foods.

I called the Yes to Life Helpline and had a very informative phone call with a really lovely lady. I was offered a consultation with Cancer Options, which I gratefully accepted. Patricia (Peat, of Cancer Options) was brilliant. She was understanding, prompt and sent me an incredibly detailed report, which I based a lot of my lifestyle changes around.

I now apply for funding from Yes to Life each month, which I use towards hyperbaric oxygen therapy sessions, supplements, organic or medicinal foodstuffs, a bar of shampoo to help my hair grow again, and products for my skin. It means the world to me to be able to buy things that I believe help in my recovery without panicking on where I would get the money from.

I’m a student who receives PIP and housing benefit as I am still not able to work. Where I would usually see alternative or holistic therapies as something that is only available to the rich, as someone from a low-income background it is so nice to feel as though I can make the most of these things too.

Anything outside of the NHS is ridiculously expensive, and I had such bad reactions to all my treatments, I don’t think I could go down the conventional avenue again.

The work of Yes to Life gives me hope and a sense of freedom. It’s a charity that recognises that not all people are financially capable of seeking alternative options to their cancer treatments and how unfair that is.

Yes to Life are incredibly informative, and have given me invaluable knowledge of ways to deal with my cancer and to keep it at bay. They are a lifeline, so to say, that I never had before and have allowed me the freedom to experiment with things that have enormously improved my quality of life.

Just, thank you. Thank you very much.

With awareness rising and demand for our services at an all-time high we need your backing more than ever.  Donate today and help us support more people like Josephine 

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