You have cancer

Diagnosed in September 2017

I have Non-Hodgkin’s Follicular Lymphoma; how did that come about?

I went to the doctors with lumps in my groin and one in my right breast. I just thought they were cists; been feeling crap after a cold that seemed to go on for ages, and was noticing a drop in my cycle fitness.

I was to go for a mammogram on my right breast a couple of weeks later.

I’m still thinking it’s s a cyclist.

I went down for a morning appointment, the mammogram was fine and I was told to stay in the waiting room till someone came to talk to me, oh…

Someone came and said they wanted to do an ultrasound to check the lump further and did I mind getting it done now, might as well I said.

So, now I’m thinking maybe it’s not a cyst.

They did the ultrasound and disappeared for a couple of minutes when they returned they said that they wanted to do a biopsy on it and again they could do that now if I was happy. And again I said yes.

I asked if it was a cyst, they couldn’t say as the sample would need to be tested first.

The biopsy was ok, the injection was nippy but not painful and it was over in 20 minutes.

I decided to park my thoughts as I had done all I could and just had to be patient

Two weeks later Richard and I went down to the hospital to get the results. The doctor called my name, and we went into a side room. We sat down, said hello and then he said “so you have cancer”. He explain that he needed to arrange an urgent CT scan and a follow-up appointment with the Haematology Department, and that was it said goodbye and walked out of the office.

Hopefully, that’s not the normal way folk get told, it was like he thought we already knew.

We walked down the corridor on our way back to the car. We were quiet. Richard squeezed my hand. I said, “well, I wasn’t expecting that”, we continued chatting but decided we needed to know what was what and therefore, we wouldn’t panic and that became our attitude throughout this journey.

I had my first CT scan ever on November 16th. I didn’t know what to expect, as it happened, it was okay. I had a cannula put in as they use dye to identify your organs better. They warn you when the dye is released, you get a metallic taste in your mouth and a warm feeling in your bladder, I did.

The CT Scanner is quite noisy but not scary and the bed was very hard but totally fine.

We met the consultant for the first time; he said I had Non-Hodgkin’s Follicular Lymphoma, and it was grade 3 due to the nodes being affected above and below my diaphragm and is slow-growing. It’s not curable but can be well managed with treatment when necessary.

All this came from the CT Scan and blood test, so we asked some questions. My first question was “is it something I’ve done, is it the way I live?” Apparently not and no one knows why but your white blood cells start to continuously divide and can’t fight infection as they would normally do. This is all happening in my lymphatic system. I finished by saying, so there’s no hurry to spend Richard money just now? Smiling, he said “no”.

The scan gave baseline information, so if my cancer changed, they could see the difference. The most significant tumour was four centimetres, and that was in my groin.

So, from here, I went on to watch and wait, now that’s a strange thing to get your head around you have cancer, but we’re not going to do anything about it. You can’t help think the worst would there be, chemo, surgery it’s not until they explain in detail what you have then you can start to understand and relax.

Watch and wait involves having a blood test and weight checked every three months and a catch up with the Consultant to see how you’ve been feeling and if anything has changed.

There were large nodes in my neck, chin, breast, stomach, groin areas so I could easily keep an eye on them.

So, the consultants watched, and we waited and we got on with our lives. I was determined to keep my fitness and concentrated on my cycling, which I did with my bike buddies to keep my fitness up.

So then came the research cause that’s what we do these days on what is Lymphoma? It is a type of blood cancer not as apparent as someone saying they have breast, bowel, lung, prostate or skin cancer. However, it is the fifth most common type of cancer in the UK.

I’ve got to admit I was feeling well, maybe a little more tired than usual, although someone would say I was constantly nodding off in front of the TV in the evenings.

In my mind, it was best to be as fit as possible in case things changed. There is no way of knowing when and what makes Lymphoma change and everyone is different.

I was losing weight slowly, which I could do with, and I toned up nicely at least something was good about this disease.

A good friend of mine introduced me to Maggie’s Fife. They are right next to the hospital (as most of them are) and you can go talk to them about your cancer over a coffee in total confidence, they have classes too and group meetings can help with stuff too, they are amazing.

I did feel a fraud at first, I wasn’t ill but they were great. Hubby used them too, he could chat with them about the practical side of things and about how he was feeling because it’s not just about me.

Watch & Wait

Watch and wait is quite strange at first. You have cancer, and you immediately think chemotherapy, surgery. But, no, the consultant would keep an eye on things as there was nothing to be gained at this time with treatment. They explained this could go on for years.

I told my part-time employer and my clients what was happening, and they were fine. I told family and close friends. I didn’t realise how hard it was to tell someone you have cancer. I got better at saying it as we spoke to more of our friends.

Fortunately for me, I could park my cancer and did not worry about it until the next appointment was due. That’s the practicality of being me. The Nurse takes a couple of vials of blood for testing while you wait, and the consultant asks how you’ve been feeling, has a quick poke around your lumps, and that’s you till the next time.

So, life went on like this, and my mission was to get as fit I as could and take life a little more leisurely. So, we booked a holiday and went to Switzerland, which was fantastic by the way, the best holiday ever, wished we had gone before.

There’s a new thing now I have cancer, holiday insurance, you have to declare you have cancer and they wanted a note from my consultant to say I was fit to travel, of course, this adds to the price of insurance, but we shopped around, and it wasn’t too bad in the end.