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So last year I turned 40 and life was great.
As we moved into the summer, we began to plan a big trip across parts of south-east Asia and kept ourselves busy with work and generally enjoying life.
In the back of my mind I was a bit worried about a couple of wee lumps that had popped up in my neck, but I chose to leave them whilst we got excited for our holiday and enjoyed summer, the Edinburgh fringe and festival season, and just generally living life.
Keeping busy with work and everyday life, I noticed myself getting more and more tired, but I just put it down to getting older and working so hard.
I did a wee bit of googling about the lumps and knew that they could maybe be something that needed checking by a GP. However, there didn’t seem to be the time to get to the doctors, and to be honest I was ever so slightly worried in the back of mind that it could have been something that would’ve impacted the holiday that we’d worked so hard for and been looking forward to for most of the year. There was no way that was going to happen, and we just carried on with life until the holiday rolled around. I figured I’d deal with it all when we got back.
So, fast forward to the middle of October and coming back from an amazing holiday and getting straight back into work. Life started to take over again, but I forced myself to go to the GP to have these little lumps checked over, and I’m so glad that I did.
I could see immediately that the GP was quite concerned as there were two main lumps, one near to my clavicle/collarbone, and the other on the opposite side up higher. She seemed more concerned about the clavicle one and suggested that I come and see the surgery nurse for some full blood counts/tests.
She also said that she wanted me to go for a chest x-ray at the local hospital and that she would put in a referral for an appointment to see an ENT/lump clinic specialist. I was naturally quite worried and did get the lecture about being 40 – smoking and drinking, unhealthy lifestyle choices etc, but she did try to reassure me that it could all be okay and this was merely precautionary.
Blood tests and chest X-rays happened pretty quickly over the next few days, and within a week I had the results back. They all came back normal. Then, the ENT appointment came in the post and I had 2-3 weeks wait to go and see those guys… That day in the clinic, I just had a slight feeling that all wasn’t well. The ENT guy felt about, did a quick nasal endoscopy and then asked me to pop next door to see his colleague for an ultrasound and possible FNA biopsy. Within minutes they were done and I was waiting to see the ENT guy again for the conclusion. He instantly said, “This could potentially be lymphoma.”
I was shocked and horrified, and he did his best to reassure me that it may also not be, but that he wanted to follow this up with a CT scan, just to make sure.
So, the cells that were taken that day, along with a CT, would confirm one way or the other. Not even a week went by and I had my CT appointment – this was a Wednesday morning.
Fast forward to Friday morning at 8:30am and I had call from the ENT consultant informing me that it was indeed Hodgkin’s lymphoma, and more worrying that it was “showing throughout my chest and abdomen”.
That was it really, all done, no more information, no chance to ask questions… I literally just froze!
I was in such a state of shock and didn’t really know how to process this information. I called my partner who came straight back from work and we talked it through.
The next steps from ENT were for them to refer me to a haematologist and a surgeon for a more in-depth lymph node removal/biopsy and then a PET/CT scan. This all happened extremely quickly and within the space of five weeks (from GP), all of this had taken place; I’d met the haematology consultant, staging was confirmed at S3 and chemo was planned to start just before Christmas on 21st December 2018 – 6 cycles/12 treatments of ABVD. Merry Christmas!
Here we are now in May and so far so good. I’m reacting well to treatment; interim PET/CT scan at the end of cycle two chemo was positive and showed a complete Metabolic Response.
I’m due to have my final treatment tomorrow and then a final scan later in June, but I’m so very grateful for the support from Lymphoma Action, Macmillan, Maggies and of course the amazing NHS team.
I feel truly blessed and so very lucky that my body has handled this all so well and my side effects have been relatively minimal. The chemo was not anywhere near as terrifying as I thought it would be, and I have to say the treatment centre itself is one of the most positive and (at times) uplifting experiences I have ever had within the NHS.
Life is very precious, and this experience has brought with it many positives. I have made some huge lifestyle choices and reconnected with a lot of people, I now feel like I’m living a life and not just plodding along.