Hello Kc98

I'm sorry to hear about the diagnosis that your sister has recently been given. Undoubtedly it's a difficult time for you all at the moment. 

I 've had a look through the forum and I can see [@Barksy]‍ recently posted here about the same diagnosis and I can see that [@Ross2991]‍ who has also had HL has previously posted offering to connect with anyone who has the same. Hopefully as I've tagged them into my response here they will see your post and swing by the say Hello! and share their story with you. 

We do have some information about Hodgkin Lymphoma on our website here but you might also like to have a look at the Lymphoma Action community forum where I'm sure you'll be able to connect with others who find themselves in similar circumstances. 

I wanted to let you knwo that we also have a team of nurses here at CRUK that you can call to speak to if you think it may be helpful. They are available Monday to Friday 9am to 5pm on 0808 800 4040. 

I hope that this helps you to get some of the advice and support you're looking for. Sending best wishes to you and your sister. 
Jenn
Cancer Chat moderator

Hiya [@Kc98]‍ 

So sorry about the circumstances that have brought you to the chat room, it's never easy getting a diagnosis. Was it a long process to get answers or was it a bit of a shock? I think they're both equallly difficult in their own ways - especially finding out that it's stage 4, that's always tough to hear.

Do you know what the timeframe is before she starts chemo? Mine was just one week between diagnosis and my first lot, so not that long, but I was booked into a chemo workshop by my clinical nurse which I would recommend your sister ask for if there is one available. It'll go through what to expect with chemo in depth, how to handle side effects etc. I found it very helpful and though I only retained maybe 50% of the information there, I was given info leaflets and contacts to take away for future reference. My boyfriend and mum were also allowed to come along which really helped them to understand what to expect ; so I would recommend you go along too if you possibly can to give yourself an idea, it's also a good way to be supportive at the same time. 

I dont know what sort of chemotherapy she will be put on, or treatment regime. However I would say that Lymphoma, particuarly Hodgkins, is a bit different to other cancers in it's diagnosis. Stage 4 is top of the scale however it's very common for people to be treated even with stage 4 and reach full remission. I was stage 3 with organ involvement and I achieved remission in January - so it can be done. The treatments they use are time tested and really are effective. I imagine given your sister's age being on her side that they will treat with intention to cure, and please take some reassurance that I met sooo many people who were in remission from Hogdkins Lymphoma whilst I was in the waiting room for clinic/ treatment. 

I could go on forever with information, but it's hard to know what you've been told or not told so if you have more specific questions please let me know and i'll answer them - literally just throw anything my way and I'll answer it as frankly and honestly as I can. However, I've given some general advice to several people diagnosed on the boards in the last few months and I'll put it here now, it's written for those with cancer so excuse the first person- 

- now might be a good time to do a big cook up of a few things you can freeze for quick and easy meals when you have no energy. On my good days now I make a big thing of soup so I know it's got loads of veggies in and a Bolognese or chilli or stew just so I've got something in small easily defrost able portions when I have zero energy on my chemo weeks.

- arrange your room so that you've got everything easily accessible. For example we moved our bed away from the wall so that we could both have a bedside table. Also because I don't disturb my partner when  i'm up and down all night whereas before I was clambering over him to get out of bed.

- make sure you've got a bag of spare clothes and toiletries along with a list of medicines ready to go incase you need to go to the hospital. I was admitted after my first chemo after a couple of days because they hadn't got my nausea under control, I had no clue I was going to be admitted so went with nothing. Having a bag ready with clean clothes and toothbrushes and a charger is now a must for me as I was admitted a couple more times after that and it takes the strain off trying to get people to bring it in for you. Plus pack a book or a game or something you know how hospitals can be.

- download a symptom tracker. This will be super useful when you first start as symptoms are different for everyone. You will never know how you will personally react to chemo so having an app to track daybby day and hour by hour will help your medical team help you. E.g my nausea was horrendous at first but when I showed them just how frequently I was feeling sick they could see it was being particularly debilitating and prescibed me stronger meds. It's also a good way of tracking symptoms that usually get worse as chemo goes on, e..g fatigue and neuropathy.

- just be entirely honest with your medical team. You  will probably find the first couple of sessions to be the worst as they will be tweaking your medicines depending on how you react as everyone reacts differently. Just be entirely honest with how you feel and your symptoms. There are so many ways and meds they can give you to manage these so don't suffer on in silence!

- if your tastes start to go or you feel nauseous, don't eat your favourite meals. It sounds strange but you will end up associating it with chemo and I can't even face some of the food I used to love because I ate it when I felt rotten and now it's just a nasty reminder.

Just a few things off the top of my head.

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One thing I would add : get the emergency oncology numbers from your team now, rather than later and make sure everyone has them saved in their phone. The treatment is probably going to make your sister neutropenic - which means she will have very low / no immune system and she will be very susceptible to bugs. Knowing who to call for advice is crucial - neutropenic sepsis is something noone wants! Also ask her doctor if and when she should be starting on a neutropenice diet to reduce risk of food bourne illnesses , details on appropriate food can be found here ; lymphoma-action.org.uk/.../neutropenia 

Sorry it's so long but as I say, just ask any specifics and i'll do what I can to help out :)
 

Sending best wishes to you, your sister and your friends and family.

I know it feels like the worst time in the world right now but it's amazing how people band together and you will get through this I promise.

Rose