What is Hodgkin's Lymphoma?

Hodgkin lymphoma is a cancer of the lymphatic system. There are two main types of lymphoma: Hodgkin lymphoma (HL) and non-Hodgkin lymphoma (NHL). Only about 1 in 5 of all lymphomas diagnosed (20%) are Hodgkin lymphoma. Just over 1,600 people are diagnosed with Hodgkin lymphoma in the UK each year.

In most cases of Hodgkin lymphoma, a particular cell called the Reed-Sternberg cell is found when cells from the lymph node are examined during diagnosis. This cell isn’t usually found in other types of lymphoma.  It’s thought that Reed-Sternberg cells are a type of white blood cell - a B-cell that has become cancerous. B-cells normally make antibodies to fight infection.

Hodgkin lymphoma is not infectious and can’t be passed on to other people.

The cause of Hodgkin lymphoma remains unknown.

Decisions.... descisions

Waiting for everything to start is quite a depressing time. I try and stay positive and optimistic but mainly I just feel tired and worn out. My thumb has been aching a lot and, considering I had my operation over a month ago now, I wish it would stop!!

Today my nurse called me as I had asked multiple questions yesterday, when I went for a chat with her. She has told me I can have a heart and lung function test (good news) and also that I can be referred to a fertility clinic. Now, I want kids one day and so having the opportunity to preserve my ovules is fantastic... however, it does mean I may have to delay my treatment by upto 6 weeks. I have been thinking this over quite a bit. I clearly don't want my cancer to get any worse but I really do want to protect my future. So I think I'm going to go along to the fertility clinic, ask a lot of questions and then decide. I will probably opt to have my ovules frozen though. You may wonder why.... well, I don't think my cancer is very fast moving and in the 2 months I've already waited, it hasn't really progressed much at all. So an extra 2-6 weeks probably won't do much damage. And also, it's going to take about 2 weeks for me to get my port sorted anyway!

I don't really know what the future has in store for me but all I do know is, I want to make the best I can out of it. I never really thought I'd be in a situation like this. I'm scared of the chemo and all these operations and stuff... but I'm sure they'll benefit me in the end.

All the best for now :) x

staging

On Monday (21/01/13) I had a CT scan of my neck, chest and pelvic area. Today I then went to meet my haematologist and get my results. He said that I had lumps in my neck and thymus and that, on that alone, I was stage 2A Hodgkin's lymphoma. He mentioned wanting to give me a bone marrow test but then decided not to (phew) as all my blood work was normal. This made me very happy!!

They were going to give me a PICC line but my preference was for a portacath and so I have asked to have one of these put in. The consultant agreed and now I am waiting for a date for the port to be inserted under local anaesthetic.

The consultant also mentioned something about another blood test he needs to do but is waiting for the right blood pot to be sent to him. That may affect my staging but he said he won't change when my treatment starts. Luckily it won't start before my birthday :D

Mostly I am worried about the chemotherapy as I don't know what to expect and it's quite scary. It's this big unknown World to me and I have absolutely no choice but to explore it. I'm sure everything will be fine but there's a lot of apprehension in me. I'm sure that's normal.

The Dr said I will be starting off with 8 treatment of chemotherapy. So that's 4 months worth. I'll then be assessed and see how I'm getting on.

As I'm 24, I have some really lovely youth nurses looking after me. They're so sweet and nice. And they've said I can have massages and things whenever I like at this special clinic :) Clic sergeant are also helping me too, which is fantastic and I'm really grateful. 

So scary stuff ahead but I'm sure it's better than I think.... I'll keep you posted x

Limbo

I am unsure how to feel at the moment. My life seems to have stopped. I'm in this strange land between diagnosis and treatment and I don't really know what's going to happen next or how long I will be ill for or what this years is going to hold for me.

The entire of 2013 so far has been not so nice. I buried my nan on the 4th January and was told I had cancer on the 7th. I don't think I've fully absorbed it all yet. Some days I feel sad. Some days I feel nothing. It's bizarre.

My arm is still aching like crazy after the biopsy on my shoulder. It's been over 3 weeks now. I also have not gained full feeling back in my thumb; it's just sore and pins and needley. It's a pain in the bum and sometimes stops me from sleeping because it aches so much.

But alas, I will not let any of this defeat me!! I know that I will kick this cancers arse and it'll all be fine. I just want to get on with it. I have cancer - there is nothing I can do to change that. But i can use this opportunity to better my life and understand what others might be going through. And I know that chemotherapy (or whatever they decide to give me) will stop me from dying and I embrace it. I have so much to live for.

My advice to everyone is to live your life. Don't stay in a job you hate or do stuff that makes you sad. Find what it is that makes you smile and makes you happy and hold onto it and follow that path instead. I'm 24 years old, I've had epilepsy, a giant pulmonary embolism and now cancer. Trust me when I say anything can happen to you, so don't waste a minute of your day. Life is so beautiful and so precious and the World is so beautiful too. Yes, shit happens. But you have to focus on the good and the positive. It's what makes magic happen :) 

when I am better I am going to continue to act. And I want to see more of the World and just be with my boyfriend and be happy and do everything we ever wanted to do. I'm also going to eat so much more healthily and take up more sport. I will learn to love running!! haha

The hardest part of all of this is feeling alone. It's difficult because no one around me knows what I'm going through and most people don't know what to say and it's very lonely. I get sad sometimes because I feel like I have no one I can really talk to. And I also feel sad because everything I planned to do this year is slowly going down the pan. Which is a horrible feeling when you have an amazing job lined up - I hope so much I can still do it and they'll understand.

I'm so glad I have such a lovely boyfriend. He is the best :)

Adios for now Amigos!

Diagnosis

Five weeks ago I found a large lump just above my left collar bone. It was hard, fixed and painless. When I found it I instantly checked my right side to make sure it was normal - it wasn't. So I headed off to the hospital walk in centre for them to check me over. The Dr told me to have blood tests and await the result. 

My bloods came back normal and so I was referred to an ENT specialist. On the 17th December I went to my first ENT appointment and the surgeon took a fine needle aspiration from my lump (which my friend named Jeremy). I then had to wait for the FNA results. These came through three days later and were inconclusive. 

A further appointment was then made for me to have Jeremy removed. This was to happen on the 27th December (something to look forward to over christmas). My lump was removed under general anaesthetic and took two hours (due to the nerves in the area etc making it risky). It was slightly larger than a golf ball and was a swollen node.

I then waited, whilst feeling slightly pathetic because I couldn't use my left arm for a bit ;), for my biopsy results. On the 7th January I was told that I have nodular sclerosing Hodgkin's Lymphoma.

ENT have now handed me over to haematology and I'm just awaiting for my appointment dates for staging and further scans. Once these are done I will be starting chemotherapy. I'm a bit scared about having chemotherapy but I know I will get through it all and be a better person for it. I just want to get on with it now.

Whilst I'm waiting I'm going to re-decorate so that everything is really clean for when my immune system is lowered. 

I have attached some photos of my lump to this post, so that it may help others in the same situation. 

I am 24, female and had no other symptoms other than fatigue.