Clare B
Posted by

so what now?

Clare B
Posted by
14 Feb 2016

10 months in remission from Hodgkin Lymphoma. Trying to move on with life post cancer and cope with the bumps along the way. What is normal now?

I was dealt the devastating news nobody wants to hear in October 2014. You've got Hodgkin Lymphoma, its cancer. I had never even heard of lymphoma before, all i heard was the 'c' word...stage 4. I felt numb. It couldn't be happening to me. I had a 9 year old son at home. I was only 33. Surely they had got it wrong. But deep down i knew it was true. It had taken 10 months to get this diagnosis. In and out of hospital, 3 biopsies later and here was the answer to my weight loss and terrible fatigue.

So 6 months of chemo awaited me. Not only that but the lymphoma had let in a serious infection so i was also on daily iv antibiotics for 6 weeks. It was a seriously tough time on my body. The antibiotics stripped my potassium levels so low they were concerned about the danger to my heart. I had to swallow huge pills to try and counteract the side effects. It was a relief when i was finally just fighting the lymphoma.

I was treated with ABVD chemo, the gold standard in Lymphoma i believe, every 2 weeks for 6 months. It made me hugely nauseous but i got into a routine of knowing id have 2 or 3 rough days, and then id slowly start to pick up again into the second week of my cycle. I went through every anti-emetic going to try and conquer the nausea and sickness, finally ending up on Emend ( ask for it if you struggle, they wont offer it routinely as its expensive ) Emend stopped me being sick after chemo and took the edge of the nausea. I had my last chemo infusion in April 2015 and my picc line came out on the same day. I even took a picture of it being removed, fascinated that a tube so long had been in my arm for 6 months.

I had a final PETCT scan and was told on 11th June that i was in complete remission. I remember this being a bit of an anti climax. I was supposed to be feeling elated, relieved, grateful and popping champagne corks right? Instead i felt a bit stunned, nervous, anxious and alone. Of course i was happy to get the all clear but when you've been consistently seen by a health professional so frequently, to be told "see you in 3 months" is very daunting. Fast forward to now and yes life is returning to more like normal. Im back at work which is a distraction. My energy levels are much better. Ive had a couple of bumps along the way. A couple of months after my all clear i found a lump behind my ear. Panic stations straight away i was convinced the Hodge had come back. It turned out to be a harmless cyst. Last month i started feeling a pain under my armpit and across my chest. My lymphoma team are so good. My nurse reassured me that the symptoms i was descrbing wasn't Hodge but arranged an appointment with my consultant anyway. He again reassured me that it wasnt. I had blood tests and an xray which came back clear. The pain disappeared on its own, most likely a virus. I wonder when I'll be able to get back to a stage where im able to rationalise sensibly when it comes to ailments. Its hard to trust your own body again and believe that you can have a 'normal' ilness without it being life threatening.

Now my hair is growing back (yipee!) but i still cant bear to have it cut. The last time it was cut was when the last bits were shaved off when i got my wig. No hairdresser is getting her pesky scissors near my luscious locks until im good and ready! Thats one emotional scar that has run deep.

Sites like this one and the Macmillan one are an enormous support.


Lizzie Goates


Hi Clare, 

Thank you so much for this. I can’t even imagine what you've been through; from reading this it sounds so tough, especially fighting a serious infection and the lymphoma at the same time. I think you write about your feelings when being told you were in remission so honestly and I also think many people have felt and feel exactly the same way. It can be an anti-climax and a loss of a safety net almost when you leave the hospital and begin your follow up appointments. Certainly getting support in those first months after treatment is finished is so helpful and one which other people can really help to offer through support groups or buddy systems. You write about your concerns over the cancer returning, and once again I feel this is only natural, and something many people feel. You praise your health care team for reassuring you which is brilliant, and I am glad they have been so helpful but it is also excellent that you were not afraid to go back and make them check and explain it all through to reassure you. I hope your concerns of the 'hodge' returning starts to fade as you move forward and remain in remission. I also hope you keep us updated and put up a picture of your new luscious locks! Thank you for such a great blog which I am sure will be of benefit to so many other people. Lizzie


Hi Clare! There is so much in your blog that I can relate to. I had aggressive, relapsing HL, which presented as a tumour in my chest. After operation, chemo, SCT, and RT we finally managed to get rid of my HL. For some time afterwards I would have panic attacks, convinced that it was back, but my GP and consultant were very supportive. I was unable to return to work, and my youngest child left home, so everything changed for me. I still managed to make a new life, got involved with Bloodwise, and now have two grandchildren to keep me going. I took part in a video and have written several blogs for Bloodwise, which you may find of help. Wishing you continuing good health...and the fear will go.