My experience with Hodgkin's Lymphoma
When I was diagnosed with Hodgkin's Lymphoma at the age of 26 with an almost two year old son, life was put on hold. Chemo was the hardest challenge of my life but I made it through and now in remission. This blog post explains my experience with Hodgkin's Lymphoma from diagnosis to today.
I was diagnosed with Hodgkin’s Lymphoma in May 2016 after a number of tests, scans and biopsies on a lump just above my collar bone. I’d been suffering from several of the typical lymphoma symptoms for over a year; not knowing they were serious. Weight loss, itchiness, night sweats and extreme fatigue being the main ones. I’d just had a baby when my symptoms started so put them down to being a new mum. It wasn’t until a large lump appeared on the right hand side of my neck just above my collar bone that I knew something definitely wasn’t right so went to the doctor who referred me for an ultrasound which then escalated to more scans and tests. I had stage 2b and the tumour was starting to spread to my chest when I was diagnosed.
I can clearly remember the afternoon I was told my diagnosis when the ENT consultant calmly said “you have lymphoma”. I remember my husband and I looking at each other in silence, for that was the moment our lives stopped in their tracks and changed forever. I was 26 and our son was almost two when I was diagnosed; one of my biggest worries was not knowing if I’d see him grow up, or whether he would remember his mummy. I’d also been pregnant with our second baby but sadly miscarried during the diagnosis period. Given my age, we faced the agonising decision of whether to delay treatment to go down the route of preserving fertility first (IVF), as we were told chemo could make me infertile, or whether to head straight into treatment. For the sake of our son, we chose the latter.
Treatment and side effects
I was fitted with a picc line and during the summer of 2016 I started 6 months of gruelling chemotherapy on a combination regime called ABVD. I would have chemo every two weeks, providing my blood counts were high enough. What people don’t realise is how your entire immune system is wiped out by the chemo to the point where even developing a common cold could leave you hospitalised. In fact I ended up in hospital just after my chemo finished as I caught a sickness bug – normal for someone with a good immune system but for someone with little immune system it was very dangerous and I was incredibly unwell. Throughout chemo our entire lifestyle had to change to ensure I stayed as germ free as possible and a lot of my son’s social activities were put on hold. My blood counts were consistently low but luckily were always high enough to continue with treatment.
The nurses had briefed me on the possible side effects of the chemo but nothing could prepare me for how truly awful it was. I suffered many of the common side effects such as hair loss, sickness, tiredness and bone aches among many others. I’d always been quite feminine so it was very difficult when I started to lose my long blonde hair; I remember the morning it started to fall out and the entire shower tray was covered in hair. It was at this point I had it cut into a bob to help brace me for the change ahead before getting it completely shaved two weeks later. I kept my eye brows and eye lashes right up until the last couple of sessions and then I would wake every morning with eye lashes in my eyes. This was as hard, if not harder, than losing my hair as I felt like my features were slowly being erased and my identity was fading along with my confidence.
Around the mid-point I really started to struggle and developed anticipatory nausea where I would be sick at the sight and smell of the chemo suite and suffer nausea at the mere thought of it. Even looking at my picc line would make me queasy (somewhat challenging as it was a constant reminder in my arm) and my son’s toy emergency vehicles were banished into storage as they made me feel nauseous every time he played with them.
Before I had cancer, I would immediately think of hair loss at thought of chemo. But in reality, there is so much more to cancer than just hair loss. The emotional aspect is huge and I struggled with this just as much as the physical side effects. On a daily basis I had an overwhelming feeling of guilt for what I was putting my family through and how my son was being affected. Two year olds shouldn’t see what he saw. They shouldn’t see an ambulance and automatically point saying “mummy” or assume everytime you leave the house that you’re going to the “nee nors”. I was also relying on my family for constant support and watching others being mum to my son was difficult, although necessary because on bad weeks I was unable to even get out of bed – I was missing out on so much. We had always been a close knit family and did everything together; my husband found it difficult to cope with the expectations for him to “continue as normal” and declined many invitations to family and work things because he wasn’t comfortable leaving me at home unwell, even going to work became a struggle for him as my treatment intensified. Feelings of anger and resentment overtook us both as we watched friends and family around us continuing with their lives and enjoying holidays and special events etc – it felt so unfair when our life had been put on hold.
The positives – yes there are some!
Chemo was tough, incredibly tough but here I am. I’ve made it through the other side and I’m now in remission! I would say my last few chemos were actually my easiest as I could see the light at the end of the long tunnel. The whole experience is still very raw, and I still have a long way to go in my recovery both physically and emotionally but I’m getting stronger every single day. However, despite everything, I really do believe that cancer was a good thing to happen to me. Already the experience has changed my entire outlook on life and has given me a much greater appreciation for everything around me, and I vow to moan less about the little, stupid things. I intend on living every single day to the full – after all, I have a lot to catch up on! In the space of a year, I have become a completely different person. I’m stronger, more determined, motivated and more appreciative for what I have in my life. All of which, I hope will inspire my son as he grows up. Of course, there is a lot to overcome in the next few months such as managing the constant anxiety of relapse, processing what’s happened, and as my hair grows, the decision of when to ditch my scarf/wig and brave my new short hairstyle – a daunting but exciting prospect.
What would I say to others?
I wanted to share my story because throughout my treatment I got great support from reading others’ experiences on Bloodwise. I could often relate to what other people had written and it was nice to know I wasn’t alone, and it motivated me when I saw how many other patients struggled, but still made it through to the end. It gave me hope that I would too. If I can help people currently going through chemo in the same way, even if it’s just one person, then sharing my experience will have been worth it.
I really never thought I would see the end, and no matter how much I struggled, I made it. I did it. I beat cancer. You will too! There may only be a small flicker of light at the end of the tunnel, but keep following it. My advice is to get through your bad days with rest and sleep, and fill your good days with happy things to push you through each chemo session. It really is the best feeling when you reach the end and I’m forever committed to helping others through it and supporting Bloodwise find a cure for this awful disease.