Welcome to the Cancer Chat forum Jo although I'm sorry about your diagnosis.

I can't imagine how much of a shock it must have been and may continue to be for you at the moment. You may find you'll go through a range of emotions as you come to terms with this but hopefully this section we have about hodgkins lymphoma on our website will help as well.

I've had a quick look through the forum and found that [@Rufus29]‍ started their chemo in January this year and [@sab275uk]‍ contended with this diagnosis 12 years ago so fingers crossed they'll pop by to share their experiences and advice with you now I've mentioned them in this post.

If you have any other questions or would just like to have a quick chat with someone about your diagnosis then do give our cancer nurses a call next week. Their phone lines are open Monday - Friday between 9a.m - 5p.m.

I hope this helps and wish you all the best on your cancer journey.

Kind regards,

Steph, Cancer Chat Moderator

Hi Jo,

I was diagnosed with stage 2A Hodgkins Disease in December 2018. I underwent three cycles of ABVD chemotherapy and got the all clear on 27th April. I was told by my amazing specialist from day 1, this type of cancer is VERY treatable and he expected to cure me! I clinged to those words throughout. I’d encourage you to do the same, ignore the websites as much as you can and listen to the people that know you and your case!

Like you, I was totally fit and well with the exception of swollen nodes in my neck which came up in June 2018. Obviously I’m no expert, but based on your symptoms and having experienced it, given the time between your lumps emerging and diagnosis plus you have no B symptoms, there is every chance you will be early stages.

I work for a family business so I had total flexibility regarding work. I would pop in for a few days on my ‘good days’ between treatments and work from home. However you have to go with your body and how you feel. It’s difficult but sensible to make getting well your sole focus and let go of everything else that you can.

Chemo does knock you off your feet, I escaped really nasty side effects but I’m not sure that anyone manages to avoid the fatigue. Also I had neutropenia (low white blood cell count). With this you become extremely vulnerable to infection and  have to inject a white blood cell booster for 3 days each cycle to be well enough for the next treatment. This is a completely normal response to chemo but again another impact on your life that you may have to account for.

I kept my lashes and brows, my hair started shedding after the second treatment and I got to point where I felt more comfortable with a wig actually after getting the all clear. Nothing can prepare you for that first glance in the mirror where your hair has gone, it’s heartbreaking BUT and it’s a big but because it can be hard to do, if you open you heart and mind to the positives of being well, being alive and your circumstances being temporary it moves you into acceptance and helps you process it. You could be lucky and keep your hair, you never know how your body will respond. 

Above all else surviving chemo and cancer is a mental challenge if you’re strong in your mind and heart, you can and will overcome it!! Also having a core of solid friends and family to support you is essential. I hope this helps in some way. I know exactly how you’re feeling right now, as do millions of others, you’re not alone, you’re just part of an new club now!  let me know if you have other questions 

Xxx

Thanks everyone,

I’m trying to remind myself that this is very treatable, but I’m really scared about my PET scan tomorrow and what it will show.

Having been diagnosed I now keep on linking things in my body (e.g hip ache I’ve had for a while, again I thought it was a gym injury) and have convinced myself that it’s advanced. 

Ive also noticed that since being diagnosed, suddenly everything in my body itches/hurts/aches/spasms.

I really want to be that positive person but sometimes it feels impossible and that I’m not up to the challenge.

I honestly don’t know how I’m going to get through this.

I’m sorry for the all the negativity.

xx

Just take it a day at a time, that’s all you can do. You’re bound to feel negative, that’s normal, just allow yourself to feel it. 

I also made links with twinges and pains I had been feeling once diagnosed, I think we just get on with life and brush those twinges off as daily aches etc. It falls into place when you’re diagnosed.

Id had a CT scan before my PET scan and so they already had a pretty decent idea of where the cells were located. Have you had a CT? The PET scan is recent technology and ensures that they don’t give you anymore chemo than you actually need to get better. The sugars in the dye show up the active cancer cells. In addition to those lumps I could feel, I had further swelling in my diaphragm nodes, but nothing beyond that and that was consistent with where my lumps were I.e no lumps in the groin etc. You can’t change or control the outcome of the PET scan so as difficult as it is try and focus your energy on how it will help move you towards getting better. You will be amazed by what you can do and how strong you can be when you have to X

Hi guys

I've found comfort reading these posts, thank you.

I'm recently diagnosed and waiting for a CT scan next week.