Hodgkin's Lymphoma Story
My story of the lead up to been diagnosed with Hodgkin's Lymphoma, Treatment and Life after the 'C' word.
My story of the lead up to been diagnosed with Hodgkin's Lymphoma, Treatment and Life after the 'C' word.
It was summer 2015 and I found myself sitting in a doctor's room, been told it was likely I had cancer. Cue tumbleweed moment, suddenly life stops and it seems it will never be the same again. It had took quite a lot to get me to the original doctor's appointment that led to this news. I will confess, I have a phobia, medical phobia, white coat syndrome, whatever you want to call it, I had it. I hate anything to do with the medical world, but I had been suffering with a range of problems for some time and I couldn't make excuses anymore, mainly as lumps had come up around my collarbone and I had lost a lot of weight quickly.
The trouble was I had been having problems for over 12 months maybe 2 years, but all these things could be put down to common ailments. I had started with eczema a couple of years ago, I'd had it as a child but this was just usual eczema and it cleared when I hit my teens, but I distinctly remember a perfectly round itchy patch of eczema came up on my left foot when I was about 24, in the two years from this to diagnosis the eczema had spread all over my body. It was intensely itchy and I found myself in the vicious itch-scratch cycle and was prescribed strong steroid cream. My skin became extremely sore, bright red and cracked, weeping and infected and the constant itch prevented me from having a full night's sleep for months. So, understandably, I began to feel very tired. My eyes would be puffy and swollen every morning and I did resemble a panda as I had bright red patches around my eyes and they were full of a gunky green rubbish (again this was put down to eczema). I then got where my sinuses were constantly blocked and painful, this was put down to a sinus infection. Over the months this never got better and my ears started to hurt and feel blocked, I had 'eczema' all around my ear lobes that would weep during the night. In the February of 2015 I was ill with a flu type virus and I never really seemed to be right after this, it was around this time that I started to lose weight, but not just the odd pound or two, it just fell off me. Everyone's weight fluctuates but I'd always had an hourglass figure and my shape changed completely so I knew it wasn't a normal weight loss. Everything had built up and by this stage I was exhausted all the time. Looking back now I think why didn't I know something was wrong? Well I was 26, and I think when you are younger you are guilty of the ' it wont happen to me' approach. But after my mum trying her best to get me off the doctors and once the lumps had come up, I knew I had to get it seen too.
The doctor, I'm sure, knew straight away what was wrong but he did mention a few other things and sent me off for a blood test and chest Xray to find out. A few days later I got a call to book me in for a CT scan and it was these results that led to me being in the doctor's room been told it was more than likely cancer. I was referred to the North Staffs Haematology department and saw the consultant about a week later. He was amazing and gave me all the information how it was, but he also put my mind at ease. Yes it was cancer, but luckily (if you are going to have cancer) it was looking like it was Hodgkin's Lymphoma, which is highly treatable. Yes been told you have cancer is scary, but I always look for the positive and I find you need to do this on the cancer experience, so the fact I was been told the odds were good was a huge bonus for me. I had a PET scan, to see exactly where the cancer was, if it had spread etc and then a biopsy to remove a couple of Lymph nodes in the neck. This was done by a small operation and the surgeon did a fantastic job so you can hardly see the scar now. This process probably took around 6 weeks, but I found it helped as I had about 2 weeks inbetween each procedure so it gave me the time to deal with each one and move onto the next. On the 12th August (my mum's birthday) I got the full results that it was cancer, Hodgkin's Lymphoma Stage 2 and that I would need 6 months of chemo (6 cycles of the ABVD chemo, a 4 hour session every 2 weeks, so 12 sessions in total) . Depending how that went, I may need radiotherapy after, but due to my age and breast cancer risk, this would only be done if essential.
I will say, this appointment was the worst out of them all, they give you all the facts, all the things you might not want to hear, told you need at least 6 months off work and well you just feel overwhelmed by it all. It was only a few days after my biopsy operation and looking back now, I realise the cancer was really starting take its toll on me, I'd never of admitted it back then, but I was ill. But I soon found my fight again and my natural stubbornness! I decided that this was my experience and I forgot everything you believe cancer to be, I was no victim and said from the start I wasn't facing cancer, it was facing me!
My consultant said to me that he would like me to use the cold cap to help stop me losing my hair. I think he saw me sitting there at 26 with a mass of long wavy hair and wanted me to go through this experience with it having as little impact on me as possible. I hadn't heard of the cold cap before and was told it was very painful, some people don't stick it, so for a few days I did contemplate not trying it. However when I asked one of the chemo nurses on the information session if I would definitely lose my hair and they said yes 100%, I thought hell no, I'm giving that cap a go! There are many views and opinions on losing hair during cancer, as in does it matter in the scheme of things, but for me it wasn't a choice to make between my life or my hair. I could have chemo to beat this cancer and the cold cap could help to save my hair. It wasn't a choice made through vanity, it was a determination to not let this cancer take anything away from me, I wanted to walk away from it, how I walked into it only healthier, I wanted to see the person I'm used to seeing in the mirror. Now I have to stress that the cold cap (Paxman Cooling System) cannot be used with all cancer treatment, mostly the blood cancers, as for example Non-Hodgkin's Lymphoma or Leukaemia, if there is a chance cancer cells are been transported round the body and could be in the head area there is a risk that these would not be killed off if you used the cap. The cap works by freezing the blood supply to the hair follicles, protecting it from the chemo drugs. However the Paxman System can be used for solid mass tumours, so I was able to use it for Hodgkin's Lymphoma, so check with your consultant. If it is an option for you , it is definitely worth trying as I didn't find it painful, it didn't take much time to put on and as a result I had zero hair loss, I lost body hair but lost none of my hair due to the cold cap, it gave me a different experience and this played a big part in my positivity as I felt like me and it was one less traumatic thing to go through.
I was put on about a two week steroid course (works wonders in making you feel better) and then chemo started, yes chemo is a scary thought. But the actual reality of having the chemo given to you, is not as bad as you think. I hate, hate, HATE needles so the cannula part, was by far the worst part for me, but once that is done that is about it.
You sit there through the chemo bags (yes 4 hours does drag) but I always had my partner with me and mum or dad and we talked, I ate a lot (that seemed to help me) and maybe had a little sleep on the last 2 hour bag, then cannula out and plaster on (I like a plaster, bigger the better). For me there was the cold cap too which was applied before the chemo started, then the cap came off on my last flush bag, so as I've said before, it really didn't take up any extra time.
After my first chemo I went home and switched off from the fact I'd had it, we always liked to make hospital days, not just about the hospital, so after chemo we would go my parent's for tea, and it was only the last couple of chemo's that I felt tired and preferred to stay at home.
Remember the chemo experience iis your experience; you are unique and treatment is tailored to you so don't convince yourself you will feel ill. I had no sickness at all during my chemo, I was given the strong anti sickness medication and they give you plenty of alternative back up medication so if you are feeling sick there is a medication to help. I had a sore mouth on my first couple of chemo's but that got better with each one. I definitely felt different the couple of days after chemo, but I cant really say how, just not myself. Few days later I felt better and I'd start getting out and about. I Straight after each chemo I did have an unsettled feeling in my stomach, a sort of bubbling, burning feeling. But it was nothing too bad I couldn't cope with. The only thing that really bothered me was the arm pain that came with one of the chemo drugs, that really built up over the 6 months and has left me with nerve damage and some pain since. But I made the mistake of putting up with this and only said how much it was bothering me on my 11th chemo, so they gave me a larger flush bag to push it through the veins quicker, it helped as the pain wasn't as intense but unfortunately I think the damage was done to the nerves by then. So any issues you have discuss it with them, there are solutions to any problems. I was lucky that my white cell count didn't drop throughout treatment, some of that may of been luck but a few of the medical team said they thought my positive attitude helped hugely. Yes it isn't always easy to be positive and of course there were times I was fed up and towards the end of treatment I had definitely had enough. But I had got a good chance of been healthy at the end of this so I was prepared go through whatever to get to that, I knew it would all be worth it.
In the early days I thought my life had stopped, but I found I still had a life during treatment, strangely even though life was about cancer, it also wasn't. I had blood test on a Monday, consultant appointment on a Tuesday and chemo on a Thursday. I took it easy a couple of days after, avoided crowded places etc. But by the Tuesday after chemo I was back to meeting up with friends and was in work a few hours a day in the week before my next chemo. I still liked all the things I liked before and realised I wasn't a different person because of cancer. My last chemo was at the end of January this year, 8 weeks later I had another PET scan and a couple of days before my 27th birthday in March, I was told I was in complete remission, the best news to ever hear.
I am now 6 months into remission, currently checks are every 3 months and at my last check up I got to see my original PET scan, the cancer I had originated from a mass in the chest cavity, I had seen notes that said it was an extremely large mass but I never chose to dwell on this, I just presumed it was the size of an orange maybe. The size it actually was shocked me, it was huge, it filled my whole chest cavity, up to my neck going under the arms and the scan showed areas were starting to glow around the groin area, all the problems I had experienced before diagnosis were due to this mass pressing against my heart, lungs and major blood vessels. Had it of been left much longer I doubt I would of had the chance to fight the cancer. This is why I wanted to share my story as those common everyday problems, of course maybe just that. However they could be something more and all it takes is a simple chest xray and blood test to start the process. Of course cancer is scary, but treatment is manageable and doable. I now realise how ill I felt before chemo started, it took a year of my life but now that seems like it went so quickly. I still suffer from a medical phobia, but I got through it. Cancer doesn't define me, but it has had a huge impact on me, it does change you, it makes you realise how strong you are. I am forever thankful for everyday now and will always be thankful to the amazing team at the North Staffs chemo ward for giving me my life back.
So if you are sitting reading this at the start of your cancer treatment, stay strong, don't doubt how strong you are and just know that you can do it and one day you will be sitting maybe writing about your experience, always remember that we aren't facing cancer, it's facing us.
How does life after cancer go? Alot like life before cancer, I am still me, I still like all the same things, do the same things but each day you have an amazing appreciation for life, it does change you but you can let it change you for the better. With the help of family and friends we have raised £4071.89 for the North Staffs chemo ward which will go towards patient comfort and nurse education. I am a Pioneer for Paxman Scalp Cooling to raise awareness of scalp cooling if it is an option for cancer patients, I have started a course to teach in further education, I still work as a beauty therapist and wedding make up artist as I did before and hope to one day teach as a Beauty Lecturer also. I am a self confessed shoe and coat addict as well as loving some reality tv and I'm a cancer survivor :)
This is my first blog on the Bloodwise Community, but I have quite a few blogs relating to my cancer story should you like a look (all the things you dont often hear about chemo treatment, food cravings, and chemo brain to start with!)
Find out more about the symptoms, diagnosis and treatment of Hodgkin Lymphoma.