Hilly
Posted by

Did she say the C word?

Hilly
Posted by
18 Dec 2014

Diagnosis, shock and getting your head around the c word.

So how did my jouney begin? My GP thought I had an ulcer and recommended I go for an endoscopy. I nearly didn't as the antacid bombs he prescribed had made the burning sensation in my stomach almost disappear. I had private health care so decided to go anyway just to see if there was anything lurking down there.

My consultant came to see me after the procedure when i was still pretty doppey and suggested (or rather insisted) I have a CT scan the next week. She said she'd found a flat polyp in my duodenum. She said not to jump to any conclusions and polyps are not uncommon. Which is mostly true. 

So I went home and googled polyps,  as you do. "Mostly not cancerous- may need to be removed or monitored" it said. Ok I thought and pretty much forgot about it until the day of the CT scan. I should have had a follow up appointment the next day but the consultants secretary called me to postpone. She said the results of the biopsy were not back yet. Strange I thought but hey ho. If there was a problem they would  have let me know immediately. Wong assumption no. 1

A week later I was sitting in the consultants very smart office looking at photos of my insides.  She said first of all the scan was Ok apart from a drainage issue with my kidney. Nothing major. I reached for my bag but then she said "However.... The biopsy shows you have a follicular lymphoma ' . I had no idea what it was or what that meant . She showed me a lovely picture of it glowing away in my duodenum. So I said what do we do about it then?  " it might need a blast of chemotherapy" she said. '  I felt a tingle spread from my head through my whole body and my mouth go dry. Chemotherapy. Isn't that for treating cancer?  Well yes it sure is. 

She rightly confessed to not being an expert in Lymphoma but said she'd already arrange a slot for me to meet a colleague who specialised in It. I called my husband at work. the consultant spoke to him as i couldnt say much. He said he'd be there in half an hour. My consultant made small talk as we walked thought the hospital to the Oncology unit. I have to say she was very kind and sweet. Maybe I should have bought her a cake!  She left me in Costa where I stared at a cup of tea for 30mins until my husband turned up.

Back in the specialists office she explained that I had a non-Hodgkins Lymphoma which was type of cancer that affected the lymph cells. Yes that was it... the word we all dread. Cancer. Every time we go to the GP with anything small, irritating, painful, sore, lumpy or swollen we all think in the back of our minds - fuck what if its cancer?! But for most of us it hardly ever is. Except this time is was. She said the word and I tried to take it in. She talked treatment, tests, timescales, research, websites and a bit more about this type of cancer. She gave me a McMillan booklet that explained more. She said she would need to do a bone marrow test and get a more detailed CT scan. My overall impression even after one meeting with her was that she really knew her stuff and that she was a compassionate woman not just a Dcotor. That was comforting and important to me.  However my mind was swimming and I needed to get out of there as quickly as possible. 

So that's how it began. The C word was to become part of my regular vocabulary and a big scary part of my life. 

Comments

24.12.2014

Hi Hilary,

Thanks so much for getting in touch and being brave enough to share your diagnosis with us. Diagnosis is a difficult time as you've got so much to get your head round. However, it sounds like you've got a good consultant that you trust and that you're adjusting ok. The important thing to appreciate is that you're not alone and we're here to help in any way that we can. Stay in touch and remember that you're not alone.

Anonymous
29.05.2015

Hi. I've been diagnosed with lymphoma this morning following a biopsy of a swollen lymph node in my neck. I'm not bothered what treatment I have (being 63 I have no children at home now and I don't have to go to work) but I am terrified of the outcome! Would really appreciate any words of comfort you can offer.

Anonymous
29.05.2015

Hi Joy
you maybe in shock as it takes a lot to get your head round a diagnosis like this.
it does turn your world upside down for a bit but then we usually adjust.
Im not an expert and am still going through my own treatment but it seems to be Ok so far.
Treatments are effective and care seems very good for lymphoma patients.
Get as much information as you can but maybe over a period of a few weeks so it doesn't overwhelm you. Dont take everything you find online as true either. Talk to close friends and family. They will all want to help and support you which again can be a little overwhelming.
i have a marvellous consultant who is very compassionate as well as experienced. Thats helped a lot. there will be more tests which are all OK. Even the bone sample is fine. They will need to get a full picture to understand what treatment to plan for you.
Talk to me any time you need support and let me know how things are going.
best of luck and big hug
H

Anonymous
30.05.2015

Dear Joy

I send you big hugs as I know how scared you must be feeling right now.

You have done the right thing by coming onto this site as you will be able to make contact with others in the same situation as you.

It will all be a bit of a blur in the next few weeks/months as you attend medical appointments and discuss treatment options. Think about the questions you would like answering and write them down, along with the consultant's responses. Your emotions are likely to be all over the place and it is hard to concentrate and remember things when you are feeling upset or worried. Rest assured that everyone involved in your care will have your best interests in mind.

I don't have lymphoma (I came onto the site to read a friend's blog) but I was diagnosed with ovarian cancer 21 years ago when I was in my early thirties, so I can empathise with your diagnosis.

Joy, this is the next phase in your life: the sun will still rise and set and the rain will fall. Some things will change and some things will stay the way they've always been...

I wish you all the best for the future.

Kate x