I noticed you hadn't had a reply yet so I just wanted to put you in touch with [@Ross2991] as she is midway through chemo ABVD treatment for stage 3 hodgkins lymphoma so I'm sure she will share her journey and advice with you when she can.
Sorry to hear about your diagnosis, you must be feeling all over the place. How long ago was your diagnosis? Have you been able to speak to your clinicians about what treatment plan you'll be on? I imagine if you have Hodgkin's then it'll be ABVD which is what I'm currently on, that seems to be the standard to start with.
Bit about me - I'm 27 year old female diagnosed with Hodgkin's lymphoma stage 3 S A. S - spleenic involvement. A- no symptoms. Halfway through ABVD chemo.
I won't go into detail about my diagnosis journey at the moment as I'm sure it's not much concern to you now that you've had your diagnosis. However I will say it was a long drawn out process from February to August and I hope yours wasnt the same.
If you're on abvd chemo there is a strong chance that they will give you a PET scan after 4 doses, to see how the chemo is doing and see if your cancer is responding to it. Please be reassured that 85% of those taking this chemo wil have a good result at this time and the B drug, bleomycin, is dropped if it shows your responding well. Lymphoma is a very treatable disease even in the later stages so please try and remain positive if you can. I had my interim pet scan recently and my cancer is all but gone - I have to continue the full process of chemo, a bit like taking antibiotics and having to take them all, which is a bit miserable but the fact they scan you so early on in the process makes me keep positive that it's working.
I won't preach too much about staying positive because I know how impossible that can feel at times, but don't give up hope, go at it fighting as best you can.
Chemotherapy is hard. It hits everyone diffrntly, before I started I read people's experiences where they continued to work or didn't get too effected, all the way to the other end of the scale where they felt awful the whole time.
For me personally the first two doses were particularly hard as noone knows how you'll react. I got a lot of side effects, nausea and horrendous bowels for one which made keeping hydrated really difficult. I've written some tips for people people on chemo, I'll try find it and repost it here.
Once the doctors could manage my nausea I found it much easier to keep hydrated and I've only been admitted for dehydration twice thankfully.
Let me find that list and I'll post it here
I could go on for an age, let me find that post and post it here and please ask any specific questions you have
I don't want to chew your ear off with stuff that isn't even helpful!
a few tips now that I'm halfway through my Hodgkin's lymphoma treatment that I could suggest.
- 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.
