Told by doctors she might not even survive treatment, Sharon Edwards has survived ten years following a diagnosis of a high grade Non-Hodgkin’s Lymphoma. Her type of DLBL was aggressive, and needed aggressive treatment. Sharon shares her experiences with us in this interview.

It is a real joy to welcome to Blood Cancer Uncensored Sharon Edwards, who leads a support group for patients with Non Hodgkin’s Lymphoma. Because CLL is the most common adult leukemia we have a lot of our readers with that diagnosis. But in fact CLL is also classified as a sub type of Non Hodgkin’s lymphoma so if you are interested in meeting others with slightly different types of blood cancer and you have CLL by all means join Sharon’s group as I have. I find it a very friendly relaxed welcoming place and even I haven’t managed to offend anyone there yet!

Other types of NHL can also sometimes be chronic, and sometimes involve watch and wait before eventual treatment and then a remission whilst wondering if and when it will come back. So our CLL patients will find a lot in common with some of the patients in that group, especially the ones with a more chronic version of NHL.

Welcome to the blog Sharon and thank you for all you do for people with blood cancer. Can you start off by telling us a bit about yourself and your own cancer story?

Sharon: Thank you Adrian.

I’m sixty nine and I live in Cornwall, with my daughter Lisa, who is forty nine and has Down’s Syndrome.

I was born and grew up in Wolverhampton and lived in Shropshire before moving down here twenty nine years ago. It’s a beautiful area, but I’m a very long way from my family and friends.

I was diagnosed in 2010 with Non-Hodgkin’s Lymphoma. There are more than sixty types of NHL. Mine was Primary Bone Lymphoma, which is a very rare type of Diffuse Large B Cell Lymphoma. Unsurprisingly, I hadn’t heard of it! I’d heard of Non-Hodgkin’s Lymphoma, but really didn’t know much about it at all.

I’d had B symptoms for a long time, drenching night sweats, fatigue and an unbearable itching. Then I began to get a lot of pain in my left hip. Eventually I saw my GP about it early in 2010. This took a lot of courage, because I have a phobia of hospitals and doctors. She was entirely dismissive, even though I was limping badly and told her that I was sometimes screaming in agony, especially getting in and out of bed. She didn’t examine me, nor refer me for an X ray. She just said that it was “probably arthritis”

At that point, I already had fractures in my pelvis from the mass, but of course I didn’t know at the time. She finally took it seriously in July, and I had an X ray, which showed destruction of bone in my pelvis. So that’s when the thought of cancer hit me. They said it was metastatic bone cancer, so they were searching for a primary cancer, and I had many CT scans, MRI scans, consultant appointments, nuclear bone scan etc.

Finally, I had to go to Oxford in August, 240 miles away, to have a bone biopsy, as this was the only route to a diagnosis. I was in hospital there for five days, and then returned to Oxford for the results. I was told I had T cell lymphoma, and warned not to Google, or I would be terrified. It was the end of September when I finally had the correct diagnosis and started treatment.

I had R-CHOP chemotherapy. I was told twice at my first haematology appointment that I may not survive it, and that if I did, the lymphoma would definitely be back, most likely within two years, but certainly within three. 

I felt very ill the whole time really. I had bad side effects, and I vomited constantly. I was immobile too, but progressed from wheelchair to zimmer frame to walking sticks. I was on massive doses of morphine.

Long story short…I survived!

Next step was radiotherapy. Initially they had said my chemo would be followed by surgery, but they decided on twenty sessions of radiotherapy instead, which I had from February to March, 2011. I was very sick all through that, too, and continued being sick until three weeks after the end of treatment. I had the usual fatigue, but this had been going on for so long by now that it was just part of life. The radiated area was burnt and inflamed. But compared to chemo, it felt like a picnic.

My sixtieth birthday was in March, soon after my radiotherapy treatment ended.

The day ended with me being violently sick.

The next event was a scan in May, following terrible back pain. This turned out to be discitis, although a lymphoma relapse had been suspected. The consultant said it was a very serious infection, after consulting a professor somewhere, who had examined the scan. I was told that moving about at all, even getting out of my wheelchair, could result in quadriplegia. I was terrified.

He said that lymphoma would have actually been easier to treat. I had a spine biopsy, which showed nothing useful, then I was admitted to hospital, where they gave me IV gentamicin and teicoplanin antibiotics for a few days. These antibiotics had to be continued daily for another two months, and they decided I could have the “hospital at home” team to administer the drugs every day.

That wasn’t an easy time. They are not the average kind of antibiotics, and the side effects were difficult. One of the nurses said it was like having neat Domestos injected into my veins. Blood tests every three days to check for organ damage, and my veins were impossible, so I had to have a central line. Apparently I got discitis due to my immune system being rubbish after the lymphoma and chemo.

At the end of June 2011, I got the news that I was probably in remission. What I was actually told was “I think you are in remission, but I’m never going to be certain.”

I had to really drag that out of my consultant. He’d never mentioned remission at all. I found it very difficult, because I’m a person who likes things black or white. I asked for a PET scan, and he said no. He said I’d had too much radiation. 

So I never really felt like I’d had good news, or cause for celebration. He’d also originally said that if I survived, it would be back within two years. 

When I got to the two year point, I started to feel like I actually was in remission.

Adrian A lot of people really struggle emotionally with having blood cancer. Did you go through something of a crisis? What did you find most helpful?

Sharon I did struggle hugely with it all.

My medical team wasn’t what you could call positive. I was terrified of dying.

Because of my phobia of hospitals and doctors, I was having to face my greatest fear. All my life, I had said that if I ever got cancer, I would just have to die, because I could never go through treatment.

When it came to it, I didn’t lie down and die. I had to find the courage from somewhere, but I’m still not sure how I got through it.

Before my diagnosis, I was under the mental health team.

Once I was having treatment, immobile and feeling really ill, I was left without any kind of mental health support. So, emotionally, and psychologically, I was at an extremely low ebb.

Cancer is a very lonely place. There is nobody at all you can talk to about your worst fears, or the darkest feelings that you have. 

Some people just cut you off when they hear the news. Sometimes even very close blood relatives don’t send a text to wish you well, and people who were in touch with you every day suddenly ignore you. You learn who you actually matter to, and that’s not always easy. A lot of our group members have had these experiences.

I didn’t really find anything helpful emotionally. It was all just agonising. 

I was very grateful for all the messages of support that I did get. It was touching that people I didn’t know very well, or hadn’t seen for decades, got in touch or sent cards and said they were thinking of me. Some of my closest relatives visited whenever they could, and my lifelong best friend came down, and stayed for a few days nearby. I had close friends and family who did keep in touch and I felt somewhat comforted to know that a lot of people were thinking of me and praying for me, which is strange, because I had no faith by that point in my life.

But in the darkest moments, I found that nothing helped at all.

Adrian I am sorry to hear just how tough it has all been for you. Cancer is never an easy journey but yours sounds particularly challenging. It is all the more remarkable how you have managed in the middle of your own challenges to reach out and support others, leading the group you do. How did that come about and what led you to decide to try and help other people? Sometimes we can feel like we just do not have anything to give and must instead look after ourselves.

Sharon I started the main UK NHL group in August 2013. At that point I was two years in remission. During my year of going through diagnosis and treatment, I had no idea that Facebook groups existed. I joined a few groups when I was out of treatment. The bulk of the membership of those groups was from the USA.

In the busiest group, there were a lot of arguments back then, which I found upsetting and surprising, in a cancer support group. Religious differences and intolerances played a big part in the disputes, but I think those groups are properly moderated these days. There was also a fair bit of discussion about health insurance, which is irrelevant to UK people. Advice was often given to “sack your oncologist,” which, again, wasn’t helpful to UK people. Where I live, I had no choice at all. There was one haematologist for my type of blood cancer.

I realised that because of the cultural differences and the very different health service in the UK, we really needed a group mainly for the UK. I put off actually starting it for a long while, because I knew nothing about starting groups, and I actually thought nobody would join. Eventually, I realised it didn’t really matter. If nobody joined, nothing was lost. So our group was created in August 2013.

We have had a team of five running the group, for nearly three years now.

Before that, it was two of us. 

In the early days, we did accept members from all over the world, but after a while, we realised that our group would end up mainly American if that continued, like all the other groups, so we decided to only accept people in the UK, or expats, or people with relatives being treated in the UK. 

My objective was to create the kind of group that I wished I could have been in myself, back when I’d needed it. I think I’d have been much less scared, and much more hopeful, if I’d been in a group.

As for what led me to want to help other people, I think that’s a fairly basic human instinct. Surely, most people want to help other people? My Nan always said “an ounce of help is worth a pound of sympathy.” Her life was a testament to that, and her words have stayed with me. I also find that looking beyond my own circumstances is actually good for me, too. My life isn’t easy, for various reasons, so spending time thinking about other people definitely helps me. It deters me from wallowing too much in my own problems.

Adrian What kinds of people come to the support group you run and what can they expect when they get there?

Sharon We have a huge variety! We have partners, relatives, friends, parents of children with lymphoma, and a few medical professionals. 

We have very young patients and very old patients. We have people who are scared, angry, looking for information, and looking for people who understand how they feel.

We have patients who are having symptoms and looking for a diagnosis, hopefully to rule out lymphoma, but needing answers. We have lots of patients who are having chemotherapy. Between all of us in the group, we’ve had most treatments, so there is usually someone who can answer questions.

We also have lots of members on watch and wait, which is also known as active monitoring. Patients with low grade lymphoma have regular check up appointments and treatment is delayed until it’s really necessary. This can be very tough psychologically. We have patients having two years of maintenance treatment, to extend the period of remission with low grade lymphomas.

We have patients who are having regular immunoglobulin treatments. Some of our members have stem cell transplants, when other treatments have failed, or when relapse is very likely. Some of our members have had Car-T, a fairly new treatment, where T cells are collected and then genetically modified and given back to the patient. Some of our patients are having radiotherapy, sometimes as their only treatment, and sometimes after chemotherapy. We have patients on drug trials. So all kinds of members!

We have lots of members who are in remission, sometimes for many years. New members are always encouraged when they hear success stories.

What can they expect in our group?

They will be amongst people who understand the kind of feelings and worries they are having. They can get answers to their questions about side effects, treatments, tests etc, from other people who have been through a similar experience. We also often find links to information for members and point them in the direction of other help and support where we can. They can expect to feel safe to discuss their worries and feelings amongst people who can empathise. Lots of our members have also made lasting friendships in the group. They’ve gone on to meet up in real life, sometimes regularly. There is always a crowd who meet up at the annual Lymphoma Action conference. Others have made strong online friendships.

Adrian If you were talking to someone who had just been diagnosed with blood cancer what advice would you give them?

I wouldn’t give any advice unless they asked for it. They might just want to talk about how they are feeling, and what they have been through to get to the point of diagnosis. A blood cancer diagnosis is sometimes quite a long and difficult process, with all the accompanying anxiety, so people often feel like they’ve really been through the mill by the time they get to a diagnosis. A cancer diagnosis brings people face to face with their own mortality, so it’s always a tough thing to go through, as well as all the invasive tests and the appointments that have taken over their lives.

If I was asked for advice, the main thing I would try to get across is that there is every reason to be hopeful, because many people live for a very long time after a blood cancer diagnosis. I wasn’t given much hope at all at my initial appointments, which affected me hugely.

I would also tell them not to Google! In this day and age, it’s only natural to look online for information, but a lot of what you will find is outdated. I found some horrific stuff after my diagnosis. I’d say that if they are looking for accurate information, look at Blood Cancer UK, Lymphoma Action, Macmillan. I’d advise them to join a support group online, and if they would like to actually meet other lymphoma patients, Lymphoma Action run support groups in most areas.

If someone needs treatment, I’d say that there are many really effective treatments available these days. Going through treatment can be tough, but a lot of people sail through it. It really varies from one person to another, even when undergoing the same treatment. If you do have a rough time of it, try to remember that this time will pass, and it will be worth it to get your life back. It can feel like it’s going on forever, and that’s very hard, when people are having a tough time. Rest as much as you need to, drink plenty, and take all your anti-sickness tablets. Be careful to avoid situations where you could pick up an infection. If you go off food, just eat whatever you can, whatever you fancy. Always phone your hospital team with any worries. Any infection needs immediate treatment, or it can quickly become very serious, so keep an eye on your temperature, especially if you feel hot or shivery.

Adrian Earlier you mentioned that you had a long period of treatment. Some people find finishing treatment is actually a difficult time emotionally. How did you cope with the transition from being treated to following that?

I was having tests and treatment for a year, and feeling very rough through all of that, so my main feeling was just huge relief that it was over. 

There was no bell to ring in my chemo unit or radiotherapy unit, but I would have hated that anyhow. What I would really have liked to mark the end of my treatment was a PET scan, so that I’d know for sure that my treatment had worked, but that wasn’t possible.

Life after cancer was very different from life before cancer, as I was left with bone damage in my hip and my back, and peripheral neuropathy, amongst other things. I think the anxiety always remains, for most blood cancer patients. With low grade, watch and wait is nicknamed “watch and worry”. With high grade, like mine, the fear of relapse is always there. For me now, I find the fear of secondary cancer from the treatments is greater than my fear of relapse.

Adrian How has the Covid lockdown experience been for you and are you now beginning to relax your shielding? How has that been for you and for the people in your group?

I’ve been shielding with my daughter at home. I did get the government letter for the clinically extremely vulnerable, but my daughter didn’t. However, in reality, I don’t think either of us would stand much chance against it. 

On the positive side, we are both people who don’t ever get bored, so I think that has helped. We always have plenty to occupy ourselves with.

I also don’t ever spend much time with other people. I like my own company. So that’s been easier for me than it is for a lot of people.

My daughter doesn’t understand what the virus is really, so that’s been difficult. She has grasped that we need to stay home and keep safe, and coped pretty well really, but she still asks me a dozen times a day when life will be back to normal, and I can’t answer that. 

Like everyone, I found shopping very difficult at first, and it was stressful trying to get supermarket slots after midnight. I’m still finding it frustrating that lots of items are missing from deliveries, but I won’t go into shops, so we cope with what we can get.

Mentally, it’s been tough. Like most people with pre-existing mental health problems, I’ve found that lockdown has exacerbated things. 

I haven’t really relaxed my shielding yet. Living in a very crowded tourist area, its hard to think of anywhere we could go that would be quiet at the moment, but I’m giving it some thought. My two tiny achievements so far have been getting petrol and getting a click and collect grocery order!

In the groups, there is still a lot of anxiety amongst our members. Many are faced with going back to work in the very near future, and that’s really scary for them. Some have children, and are facing the new school term with some trepidation.

Lots of our members have had to cope with worries about their treatment or lack of it throughout lockdown, and fears about the safety in hospitals and surgeries for appointments and blood tests. Many have had cancellations and delays with treatment and tests.

I think a lot of members haven’t made many changes to their lockdown routine as yet. Some members have been less anxious all the way through, and have taken more of a “life is for living” kind of attitude. Some are enjoying making plans for holidays now that things are easing. A variety of responses to the end of shielding, really.

Adrian One last question Sharon, your group seems to actually be two groups and I am always a bit confused about that….can you help me understand that! What should someone do if they want to join your group?

We do have the two groups, which run alongside each other, with the same admin team for both groups. Our main group is UK Non-Hodgkin’s Lymphoma Support Group, and the sister group is UK NHL Social Network. The social group is only open to people who are already members of the main group.

Basically, we keep the main group for posts about symptoms, tests, diagnosis, treatment, side effects, watch and wait, or anything else that’s directly connected to NHL.

On the other hand, anything at all can be posted in the Social group, and we don’t have post approval on.

We get lots of posts there about peripheral topics, such as travel insurance, benefits, flu jabs, alternative treatments, etc.

Members also often like to post links with news or articles about blood cancer, or drug trials and new treatments. We have often had the same news link submitted many times in a day by different members.

Some members like to share selfies, or inspirational memes, family photos, music videos or just jokes and light-hearted question and answer posts.

All of these other topics should be in the social group.

We know that some people do find it confusing. We aren’t sure why!

The whole thing is set out in the announcements at the top of both groups.

The reason is simply that we don’t want important posts, asking for help and advice, to slip quickly down the page in the main group. We’ve often had people who need quite urgent advice about infection, for example. They don’t want to make a fuss or bother their team, but because they ask in the group, and get advice to phone the hospital straight away, they do end up going in for a few days and having IV antibiotics. Often people reach out because they are really frightened or worried about a test or a procedure, and they need some support and feedback from people who can reassure them, based on personal experience. We just don’t want these posts to vanish, and that can happen quite quickly when the group is busy.

So, as an example, Adrian, if you wanted to post or ask a question connected to your own treatment, or share a milestone in your cancer story, that would go in the main group. If you wanted to post a link to your blog, or ask about the best place for travel insurance, that would be in the Social group.

If anyone wants to join, here’s the link: https://www.facebook.com/groups/1412013712343588

Conclusion: Well thank you so much Sharon for joining us. It has been wonderful to have you.

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