We are confident you are clear now - we will keep an eye on you every 3 months but until then, you're good'.
It's a sentence riddled with all kinds of feelings. Relief, shock, guilt, confusion, naming just some.
After a whirlwind of appointments, hospital visits, procedures and a surgery, it certainly wasn't what I was expecting to hear. In truth, I was expecting to hear a range of treatment plans and big words that I didn't understand. I had mentally planned it out in my head how I would respond and what questions I would ask. but non of it was needed because right now, I'm cancer free.
I should feel happy. Which I do. I should feel grateful. Which I do. I should feel relieved. Which I do. but something doesn't feel right. Something deep down niggles at me and takes away the excitement that I think I am meant to feel as well.
Let me give a bit of background. In September my Arthritis consultant referred me to have a full PET scan after my bloods, bones, muscles and all other tests, not adding up. The PET scan showed 'several lymph nodes that were concerning in size' with a recommendation to have a biopsy ASAP. These ranged from 22mm to 12 mm. I believe 5mm is the average size they should be but I might be a little out on that.
This was the canula used to insert a toxic sugar dye into my whole body. This goes around the body and highlights any areas of concern that they may (or may not) be looking for. This meant that I wasn't allowed to be around children (anyone under 16) for approx. 24 hours. This meant a day off work and hiding out in the bedroom at home. It was a peaceful night with the children talking to me through the door. Even David slept on the sofa that night, just to be safe.
I got an appointment 2 weeks later to go to the hospital for a 'core needle biopsy'. from what I researched, this would be where they inject into your neck and removed a piece of the swollen node/s to examine and see what they thought it was. What i read told me it was 'a painless procedure' in most cases'. Well, it is me, and I can assure you it was one of the most traumatic experiences I've ever had. And I've had 3 children, had a tonsillectomy, a Appendicectomy, and lived with chronic arthritis. This was worse! The lovely lovely doctor and nurse, openly admitted that it was a tricky angle and that it would be uncomfortable. But as the nurse crawled onto the bed with me to comfort me, tears streamed down my face, not only with physical pain, but with emotional exhaustion and the realisation that I was being checked for cancer. I called David afterwards and was an uncontrollable blob to him and to my lovely sister in law. It was definitely the tonic I needed though to get me through the waiting stage, they say a good cry is good for the sole and in this case it was true.
I had an allergic reaction to the plaster so it looked much worse than the actual needle mark was.
Then we played the waiting game. It was a strange time. I had a gut feeling something wasn't right, the whole thing had been rushed through pretty quick so far. So it was a week focusing on work and home life and passing the time. In fairness to our wonderful NHS, we only waited a week. I was given an appointment with the ENT department due to the location of the worrisome nodes. However, as I sat in the waiting room, and my appointment time came..and went, with each minute I knew that they were trying to find answers and discover what was happening. I was right. When I got called in 45 minutes later, the lovely doctor apologised but said that he had been on the phone to the pathologist trying to get my results. He said that two specialists had looked and that 'Unfortunately your biopsy has showed Lymphoma;, He discussed another guy having to take a look as they like 3 people to look and that he would call me asap. However, he wanted to book me in to have the affected nodes removed as he believed it had been caught early. I was eager to go along with whatever he said as to be honest, he was really nice and seemed to put me at ease that it had been caught early and that the quicker we get the nodes out, the better my chances were of having no treatment. I did all the pre-op stuff there and then. I swear, if he had a bed and a knife, he would have taken them out himself! I had bloods taken, did MRSA swabs, an ECG, height/weight, and a whole string of questions. I drove back to work a little shell shocked but ready to get on with it. In the car, he called me and said 'We have just had confirmation, we are definitely looking at Lymphoma, lets get it out and see what we can do'. We planned for the week after however, there was an issue with the booking office people and they called and booked me in for 20th December. To say I was devastated would be an understatement. In my head, I didn't want to be out of action over Christmas. I have 3 young (ish) children (15,12 & 9) and I wanted to be present with them. I was also aware of the importance of recovery after surgery especially as I am already immunosuppressed and so recovery is slower anyway. But its what they said so we went with it.
We told family and close friends and essential work colleagues. There were points I wasn't sure I wanted to, but I also knew that we might need help over the next few weeks/months. People have been so kind. That has been a huge part in our story - the phone calls, voice notes, messages, deliveries, visits, gifts...just people being how people were designed to be, Kind, patient, understanding.
Then came the hardest part so far. We had to tell the children.
No one tells you how to do this. But David and I both felt like the truth was the best was and being open and honest about everything. So we did just that. We spoke about what cancer is, the different types, the effects of it. We spoke specifics to what I had and the good outcomes it holds and the hope that we felt from the doctor. I won't share their responses because that is their experience to share. But what I can tell you is that when it came to it, I couldn't do it and David did it all. And I loved him even more than I already did for that. What a burden to bare and he did it with kindness and understanding whilst being honest and factual. It will forever be a memory. We then had to tell the schools to ensure the children had a support network wherever they might need it. And then I had to go for ANOTHER Pre Op as it went over a week since my first one. As luck is with me, it turned out I had contracted MRSA, they assumed either from the hospital itself or from my work place. That, along with more bloods, ECG's, questions etc) meant that I had to use an antibacterial wash in the shower twice a day as well as use an antibacterial ointment up my nose three times a day. I believe I was the cleanest person anyone could have come into contact with by the end of it!
Then something good happened. They brought my date forward. I got a call on the Thursday to say they would do it Monday morning. I was elated. Although it was only 5 days earlier, it was 5 days where the children were in school and I could recover guilt free. It made a huge difference to my thought process and attitude.
It felt big. It felt scary but I felt Hopeful. I felt like I was surrounded with love and that I constantly had Hope and the power of Hope brought to my mind. So at 6.30am I was picked up by a lovely friend (whilst David took Evie to school and would meet me at the hospital later) and we headed to the hospital. As my luck would have it, I was put in the same room, in the same bed that just 18 months earlier I had bled out in after a tonsillectomy and had needed emergency care to stop my throat closing up. It made me nervous but I had a lovely nurse who saw my anxiety and checked on me every 5 minutes. She also moved me from 4th on the list to 2nd. I will always be grateful for that as it meant I could go home that day.
I came around with a lovely nurse instantly saying 'Karen, can you smile, I need you to smile'. apparently I did and then said 'Well, at least I'm not dead'. There is something that happens in recovery. Like, you hear and see everything but you can't respond to any of it for a few minutes at least. I remember listening to conversations about Christmas parties, weekend plans, night shifts and decorations in corridors. I enjoyed watching peoples faces and watching them work whilst gently taking care of everyone. Then the shaking began. I couldn't control it, I felt cold to the bone. They put an inflatable heating blanket on me which worked really quickly and I felt my body relaxing. all the while a lovely nurse gave me sips of water with a straw and gave me pain relief.
I was conscious that my neck felt so sore and swollen but it didn't feel like there was any covering on it. I asked as it genuinely confused me, to be told 'No, air is the best healer'. I'd apparently had some dissolvable stiches inside the neck skin and then been glued together on the surface.
When I was back on the ward, several people commented on how neat the cut was and how they had done such a good job. I didn't feel good. In fact I felt the total opposite and just cried a lot. Again, a lovely nurse comforted me and assured me that the scar would go right down but reminded me it would look worse before it looked better.
It started to heal really well at first. The pain was manageable although moving my body was a challenge. It was...well, like someone had sliced into my neck funnily enough. All the muscles in my neck, shoulder, and face hurt and turning was practically impossible. However, it was all manageable with over the counter pain relief. I had been given Codeine and Tramadol, however, I really didn't want them as they make me feel sick and that was the last thing I needed.
Then I got an infection. Which got bigger and bigger. Hunchback came to mind. I had been warned this might happen but I had no signs other than swelling. I had no additional pain, no temperature, no illness. However, I was beginning to find it difficult to hold my head up without a significant ache rather than pain. so on Christmas eve I went to the doctors and bless our NHS, I was seen within 40 minutes and had 2 sets of antibiotics within an hour. And they worked, thank goodness.
So overall the recovery was approx 3 weeks and it was needed.
So with the rerun of the past, I go back to the present.
We are confident you are clear now - we will keep an eye on you every 3 months but until then, you're good'.
So when they took the nodes out, I was told it was to measure the depth of the cancer, name specifics and to come up with a treatment plan.
However, a discussion I had with the consultant on New Years Eve was filled with good news that we were not expecting. Apparently they had removed 3 very swollen lymph nodes to explore (plus an additional one for research). They found that the cancer was only in one of them. They had done some swabs whilst in there and tested the area and found no more traces of cancer. I mean, in his words, 'if you're going to catch cancer, that's the one to catch'. There was no treatment plan as such. There is a watch and wait type of loose plan which consists of a follow up appointment next week, follow up scans in 3 months and then 6 months (I believe). But as of now, that's it, unless something changes that I am worried about. And it is a weird feeling.
I guess when you are told you have cancer, your mind automatically makes plans, consciously or sub consciously. You plan for the worst, it is in every thought every minute of every day. You become a statistic, which I hated. You feel brave but scared, strong but weak... but its all so fast that you don't really notice. And then there is nothing and it feels weird to go back to reality. There is a constant 'What if it happens again'. For me I'm struggling with 'did I make a fuss about about nothing?' and 'Will people even believe me'.
I tried so hard to carry on as normal. But the reality is, it wasn't normal, it was a strange and scary time. And now it's less scary, but still as strange for what, from the outside in, looks like no reason.
I'm so very grateful I'm one of the lucky ones, I mean, I didn't even need treatment. But that adds to the guilt.
I'm OK. And for that I am fully grateful and relieved. But my story feels like it hasn't got an ending yet and that's very confusing sometimes and now I have to find a way to manage that big feeling.
