Louise’s story: Cancer, courage, and compassionate treatments.

Can you tell us a bit more about your health history and cancer diagnosis?

In April 2022, I felt a lump on my chest. I said to my husband, “Look, I don't think it's anything, but I'm going to go to the doctor to have it checked.” 

My family has a history of cancer. Both my sisters have had cancer—my middle sister had leukaemia and breast cancer three times twice - which resulted in two mastectomies —and my older sister had cervical and bowel cancer. We found out in 2020 that myself, both my sisters and my youngest son have the BRCA2 gene which puts us more at risk of breast, ovarian and prostate cancer. I had a mammogram and an ultrasound, and my doctor said, “I don't like the look of that at all, so we're going to biopsy it.” 

My biopsy didn't look right, and my doctor told me that I needed to go home and make a hard decision: because of my family history, I'd always said that if I ever found a malignant tumour, I would have a double mastectomy. It was a no-brainer for me, and I was scheduled to have the surgery in just four weeks. 

I was due to get married that September, and my oncologist assured me that I could have the surgery, get my reconstruction done, and still be able to get married. I thought, “Okay. At least that's something positive.” 

So, did you have the surgery?

I did have the surgery - but there was a complication. The cancer had gone into my lymph nodes, and in my good breast, the muscle had split, so they had to make a new muscle on my good side. 

After about a week, I didn't feel well at all—I developed an infection in the scar line. It wasn't healing, so I had to go in for more surgery. After that, my doctor said, “I'm sorry, you are going to have to start chemotherapy and radiotherapy starting in August,” and so, we had to cancel the wedding.

I had 18 weeks of chemo, which I finished in December, and soon after that things got even more complicated. This time I had a surgery to do a reversal on my expanders, because they carried a magnet, and you can't have radiotherapy when you've got magnets in your chest. 

He switched out the magnets for ones made of silicon. When he put the silicon in, the pain got worse on my chest, but by then nothing could be done about it, because I needed to start my radiotherapy. My doctor said the pain would go away, but it never did. 

And, what happened next? 

To complicate things even more, I was diagnosed with lymphedema on my chest [a swelling caused by a compromised lymphatic system.] This is common when you have your lymph nodes taken out. My lymph nodes were only taken out on my right side so, technically, I should have only affected that side, but instead it affected the whole of my chest, both my arms, and down into my legs, which makes me walk with a limp. 

Finally, after a year of surgeries and healing, I was able to get married in 2023. 

Soon after, I was scheduled for another surgery to have my implants taken out. Just prior to that operation, my doctors looked at a scan I’d had for the lymphedema. Just two days before my operation, I got a phone call from my surgeon. He said, “I’m really sorry to say this, but it looks like two nodules on your lungs have appeared.”

We cancelled the implant removal and, six weeks later, they removed the two nodules and two glands from my chest. About a month later, all looked clear, until a special blood test came up positive for tumour cells in my lungs. That's when they gave me a prognosis of six to 12 months, which was not what we were expecting. My oncologist recommended that I start level IV chemo right away, so that’s what we did. 

Just two months ago, I had another scan and the nodules are not visible now, so I'm stable, but I’m still doing chemotherapy. 

How are you finding chemotherapy treatment?

The side effects from the chemo are horrendous. The tiredness is the worst one, but the nausea and diarrhoea are also horrific—I never know when the nausea is coming, there's no rhythm to it.

To treat the effects of the chemo I take six steroids, anti-nauseants, antihistamines and anti-reflux medication as well. The anti-nauseants don’t work well, so I still feel nauseous all the time. The other medications reduce my sense of taste, so everything just tastes the same. Everything just tastes bland, like a plain jacket potato, which is incredibly depressing. 

I've also lost over a stone since the treatment began, and I was expecting that, because people always lose weight when they have cancer, right? But my doctor surprised me when he told me that it wasn’t actually the cancer making me lose weight—it's not the disease progressing—it's the treatment itself that is causing my weight loss. The chemo just attacks the stomach and makes eating difficult. 

Actual vomiting isn’t as common with me as it is with other people who do chemo, but when it does happen, it’s a horrendous experience for me, because of the pain in my chest. It’s horrible, and feels like I’m ripping the lining of my stomach. 

Aside from the physical pain, just the stress of knowing that I have to face all these side effects all the time causes my anxiety to go through the roof.

Is this what led you to look into alternative or adjunctive treatments like medical cannabis?

Yes. It's all about treating the side effects, as well as cutting down on all the prescribed meds, because I've been taking them for two and a half years now, and I just like I need a break. I just need a moment to try to process the last two and a half years. That’s why I came to Releaf in the first place.

Every time I've gone to see my oncologist, the results of every test have never been what was expected. Never. Especially the last time they gave me the all clear. They said my lungs were clear in April, and then literally a month later, they said, “I’m sorry, they're not clear.”  Then my prognosis changed from six to 12 months to three to 12 months. How can the prognosis change like that?

Now, my priority is only to be comfortable.

My best friend's mum had tried medical cannabis, and a lot of people have talked to me about trying it. My sister has had problems with her spine, and she was using CBD oil. I started hearing more about the benefits of medical cannabis, and my husband and I just thought, “Well, maybe now's the time to try it, because of how bad things have become.” 

The fact that it's now medically prescribed certainly made me feel better about it. Of course, I want to know where my medicine is coming from. Even if I was given cannabis by a friend, I wouldn’t take it. 

So, how did your initial consultation with Releaf go?

When I first spoke to Dr. Clenton, I liked her from the minute we started speaking, and I felt really comfortable talking to her. I felt like she really knew what she was talking about, and I could trust what she was saying, because she was asking all the right questions. I knew she wasn't going to give me a treatment that was going to make me feel awful straight away. 

Dr. Clenton and I chatted for at least half an hour, and she never once made me feel rushed, or like she needed to go and deal with other things, she was focused only on me. The second time I spoke to her, she remembered me and said, “Hello Louise! Nice to speak to you again.” I was very impressed by that. She must talk to hundreds of people, and for her to remember me and call me by name felt a lot different from my experiences with other doctors. 

My first prescription came super quickly after my consultation. I was very impressed. The communication at Releaf since then has been incredibly good. I get notifications from the team, asking if everything is okay, or if I’m having any problems with the treatment. It feels like they really care about me.

And, how has your treatment with medical cannabis been going so far?

I tried the vape at first, but didn’t feel comfortable with it. I’ve never been a smoker, and with my condition it just didn't feel right taking anything into my lungs. 

I told Dr. Clenton that I didn't want to use the vape, and she said, “That’s fine. That's not part of your prescription any more. That’s the way you want it, so that’s your choice.” She reassured me that if I ever felt like I needed to change anything else, then I should get in touch and have another consultation. That was fantastic. 

Now, I only use the medical cannabis oil, and for now it’s working. I admit, I’m not a big fan of the taste, so I take it with a bit of orange. I guess a lot of medicines don’t taste that great, and the oil really works for my side effects, so I guess it’s not really so bad. 

The first big change that I noticed was my sleep. It seemed to calm my mind and helped me sleep much better at night. I used to take the antianxiety tablet Lorazepam at night to sleep, and I'm not taking those any more. Lorazepam was something I never really wanted to take because it can be an addictive medication. 

Have you spoken to your friends, family, or NHS care team about using medical cannabis?

I’m aware that people are wary of medical cannabis because they don't know much about it, but when I tell them my story and why I’ve been prescribed medical cannabis, they say, “Oh, wow. Okay. I understand.” Often, people have no idea that it’s even available in the UK for prescription. 

I’ve told some of my nurses about my medical cannabis treatment, and they have been brilliant. They said, “You know what? Just go with it.” One nurse said that they weren’t supposed to encourage it, but she told me privately that it was my decision, and if that's what I wanted to do, I should do it. 

I’ve noticed a lot of interest in medical cannabis for people with cancer, because so many are desperate for alternatives. Unfortunately, I've got too many friends with cancer at the moment. I've lost one friend this year already, and might be about to lose another one, who only received their diagnosis six weeks ago. 

I think that people need options other than standard treatments. I was given paracetamol and ibuprofen for years for my pain, and I can’t imagine how much damage that might have done to my stomach. That’s not what I needed. I always knew that I needed to find something else. 

There has got to be alternatives out there that the world isn't afraid of. My medical cannabis prescription has been properly explained to me by my doctor at Releaf. I know why I've got it, where it came from, and how much to use. My medicine is prescribed for me and my particular condition, it’s not just a standard dose that’s given to everyone. It’s personal. 

Have you ever had to use your medical cannabis card?

I took it with me when I went to Majorca, but I haven't had to use it. It's really strange. I put my medical cannabis oils with my card into a clear bag. The airport security officer took them out and looked at them, and I thought, “Oh, here we go.” But he just said that he needed to scan them again, and he didn't even look at what the liquids were. He put them back through the machine, and then I was on my way. I didn’t try to hide anything, and with my card I felt quite comfortable. I had no problem at all.

Do you think if people heard stories like yours, they would be more open to alternative treatments like medical cannabis?

Absolutely. There are many forums on cancer websites where people are telling their stories. Word gets around through all these groups, and people are talking about how much medical cannabis can help. 

When I realised that medical cannabis was available for prescription, I felt the stigma slip away a little. I knew it was coming from the right place—from a doctor, not from the street. Opinions about it are becoming more positive, and I think people are more willing to listen now. I think interest in alternative therapies is definitely growing. 

I just want to enjoy every day, and I hope I can do that by managing the side effects of my chemo.

I’m just trying to remain positive. I do have dark days, and I'm hoping the medical cannabis will continue to help with that, because I need a bit of help sometimes. It’s not always easy to be positive. Everyone tells me, “You're so strong, I can't believe how positive you are,” but it’s been two and a half years now, and it does get hard sometimes.

But, living with a negative mindset is no way to live. You have to be positive. You can't wallow. Some days, you really want to, and you have to give yourself a kick up the arse and get yourself together. I don't know where the strength comes from, but I just do it.

I’m happy to have found a medicine that helps without being so hard on my body, so I’m able to just get on with life. It’s a much more manageable and comfortable way to go forward into the future.

For more information about medical cannabis treatments for this condition, please see medical cannabis for cancer pain.