So this blog entry might be triggering or just a bit TMI for some people. In it I’m going to be going into detail of my journey with being diagnosed with Hodgkin’s Lymphoma and the following chemotherapy and its side effects. I will also preface this with the fact that each cancer and chemotherapy journey are different. People will tell you about their journey, or a family members, you’ll get a lot of advice and not all of it will be relevant to you.
Almost a year ago I noticed lumps in my neck. Now I was used to your lymph nodes becoming inflamed when you fight off an illness, so I assumed that was exactly what was happening. After they were sticking around for unusually long and no signs of me actually being ill I asked some friends who were concerned and said it didn’t seem normal. One said it was muscle damage but spoiler alert, they were wrong.
I booked in with a nurse at my GP which is standard procedure. They did a blood test but asked how soon I could get in to see the GP for a second opinion and to discuss the results of the blood test. It was only a few days later but everything in my bloods was normal, every question they asked about other symptoms I answered no, so they said they weren’t concerned but I was being referred for an ultrasound on my neck just in case.
This took two weeks and I had to ring up because it was getting very close to when I should be going seeing them and I hadn’t had any letter. The lady on the phone let me know the letter had just been sent out but the appointment was in about three days. I had to use an emergency holiday to get the day off although they later rescinded this due to the outcome.
The ultrasound was very standard. They put the gel on and rubbed around my neck. At the end he let me know he could see about twelve inflamed lymph nodes. They couldn’t be sure what it was but their concern was that it was Lymphoma which as he put it ‘It’s still cancer but if you had to pick a cancer to get this would be a top pick.’
I had to go in two days later for a biopsy and this would be the test that confirmed if it was Lymphoma or not. I was injected with anaesthetic and then a larger needle essentially punctured a tube of flesh out of me. I affectionately referred to this as ‘Neck Noodles’ or ‘Flesh Spaghetti’.
After this I was brought in for a consultation with a haematologist I thought this was going to be the diagnosis but they hadn’t had the results back yet. So she went over a lot of the questions I was asked before. Are you having fevers? Are you itchy? Unexplained weight lose? I felt like I was doing something wrong that I didn’t have any of the other symptoms.
Next time I was brought in it was the diagnosis. I had got to the point where I would have been more shocked if they said I didn’t have Lymphoma at this point. Especially as I had had a phone call early which can be summed up by ‘We are not saying you have cancer but where would you like to do your chemotherapy?’ The haematologist confirmed it was Hodgekin’s Lymphoma. I let them know I’d like to do my chemotherapy at the Christie, which was a possibility for me as I just clipped in as a young person covered by the teenage cancer trust.
I had to have a Pet/CT scan to confirm how far along the cancer had progressed. This involved a fast and then irradiated sugar was injected into my blood stream. The cancer cells absorb the sugar faster than any other part of the body so they show up on the scan. This was also the first time I had a cannula put into me, but it was only while they got the sugar in which wasn’t a long process.
My first chemotherapy appointment was mid October. I was stage 2A, which meant it had spread to the lymph nodes in my chest (That is the 2). The ‘A’ referred to me not showing any symptoms void the actual tumours. They weren’t sure how they would be finishing off the chemo at this point as it depended on how I reacted to the treatment which they would be testing in three months time.
The type of chemo I would be doing was ABVD for Adriamycin (This may get called doxorubicin), Bleomycin, Vinblastine, Dacarbazine. They all affect the cancer, and your body in slightly different ways. One affects your heart, one your lungs, one your nerves and the other makes you sick. Other side effects include: hair loss, constipation, diarrhoea, numbness, lose of coordination, and reduced blood count.
A standard day of chemo goes like this. Your taken in for your blood test as soon as you arrive to make sure you are well enough to have it. Then once the results are back you go talk to your consultant. In the first one they will get your consent to do the chemo and what to expect but after this they will ask about side effects and make sure you have everything you need to deal with them. Then once your chemo arrives (as they can only order it once your blood tests show as okay) they put a hot pack on your hand to make the veins easier to cannulate. You are given two types of anti-sickness medicines, five tablets in total, these work great for me and I was never sick. If they don’t work they try you on other ones.
Then they put the cannula in, which is the type of needle that an IV is connected too. Some of the chemo is given through a drip, while others are injected into the tube. It takes about three hours in total, most of which is the last bag as it burns your veins and to reduce that it is slowed down with saline.
The first session I left feeling pretty okay. I only had to take my extra anti-sickness tablets a few times. The nausea lasts for the first three or so day, after that I experienced arm and chest pain which according to the nurses is the effect of the last bag on my veins. This initially only lasted until roughly a week after my chemo however by the end of the my chemo journey I was still experiencing it as I was going to get my next lot.
The level of pain varied. The second session was the worst in terms of pain. I was laid up on the couch not really moving. Most of the time though it was bearable. Things that helped with it were being warm so I spent a lot on heating over the six months I spent doing chemo.
One of the other side effects which worries a lot of people is hair loss. I did notice my hair falling out much faster after a about two months so chose to shave it. I thought I would be fine with this as I know so many beautiful, bald women. However it hurt, I felt ugly. I had a wig but it was very hot and I sweated a lot wearing it, so instead found a cute velvet turban which I much preferred. My hair then never really fell out fully on my head, you wouldn’t notice if I didn’t mention it. I did lose most my eyelashes and eyebrows, as well as the rest of my body being pretty patchy.
This is the TMI bit. The other side effect I experienced a lot of was constipation. This normally hit in about three to five days after doing a round of chemo and then stuck around until maybe a few days before I was due back. So a week roughly. I started off with senna tablets but they did nothing. So I was moved onto movicol which is a much stronger medication for constipation. The recommendation is one sachet a day, I ended up have to take four sachets a day to get things moving. However I also had a terrible habit of not taking any until the pipes were blocked so to speak. This resulted in pain, blood, and crying on the toilet. I learnt my lesson.
Now that I’ve bored everyone with the side effects I’ll let you know the treatment worked. I could tell very quickly that the size had gone down on the tumour. When they did the test at three months as well they confirmed that it hadn’t spread anywhere else and the tumours that were there had shrunk considerable. So they dropped off the drug that effects my lung capacity. The other ones are too key in fighting the cancer so they have to stay on.
Here is a picture for comparison, this was taken in my first session within about five days of actually doing the chemo so you can see the difference was massive.
After Christmas things got tougher for me emotionally. I just wanted done with it and each time I went chemo it was having more of an effect especially the nausea. I feel most of it was mental, like the food I’d previously enjoyed at the hospital had started to knock me sick just by thinking about it. On my second to last session I had to take an extra anti-sickness tablet on the way to the car because I felt so wretched.
There were also issues with fitting the cannula a few times where they hit valves and had to re do them. I’m fairly squeamish so when this happened on my second to last visit it sent me over the edge and I started crying. It’s not the most painful procedure but after a while it becomes mentally and physically exhausting.
I was also hospitalised in a few times due to health scares. I had signs of a cold and a high temperature so I was brought in and got a blood test. The first two times I came back clean so was sent home after I’d finished my antibiotics. These are done precautionary. However on February 13th I was sent in to a general hospital and wasn’t released for several days. Initially it wasn’t explained to me why I was being kept in but on the morning of the 15th I figured out I was contagious.
Apparently they forgot to tell me I had the flu but all the nurses in face masks around me kind of gave it away. If it wasn’t for the fact I had cancer they wouldn’t have kept me in but my white blood cells had dropped and they were worried about me leaving and picking something else up.
Very spoilt of me but I was so stressed during this period. It was valentines day and my partner’s birthday and I was in hospital with a glorified cold (I was only coughing). On the 17th they let me have a mini break and go for a meal and then come back in the evening. Honestly I was ideal patient after that because it gave me some time to destress and I had no other plans to worry about. I ended up being released the next morning anyway after they talked to the Christie.
So I had my final chemotherapy session as long as all comes back okay in my scan in six weeks. If not I will have to do more chemotherapy maybe radiotherapy. If it is okay I have to go in for check ups for the next five years to make sure I don’t get it again. It is about a 30% chance of getting it again during that period. I need to keep an eye any symptoms or signs it may be coming back. It will take a little time for the side effects from the chemo to go away, apparently the two week mark is when I will start feeling more normal as that is when I would normally be getting my next session. However there are long term effects that will take much longer to fade such as the effect on my heart and lungs.
It’s been a very surreal experience. I didn’t expect at twenty three I would have cancer. I’m very lucky my work have been supportive. I’ve had a lot of support from my friends and family as well. If anyone reading this wants to ask questions feel free to drop a comment or a message if it’s more personal. But hopefully it’s onwards and upwards from here.
A big thank-you to the Christie, the Teenage Cancer Trust and Willow who are all amazing charities that help cancer patients. I feel like this would have been a much different experience if it wasn’t for the expert care of the Christie nurses and doctors, the support and fun the Teenage Cancer Trust provided, and finally my special day provided by the Willow which I’m looking forward too at the end of April.
Have another picture that I took yesterday after my last chemo session with my cherry blossom tree. As you can see, pretty much no eyebrows but head hair is pretty okay…