Im new here. my husband whos 49 has stage 4 hodgkin’s lymphoma after 6 months of chemo he went into remission last year, 4 months after his last chemo finished the cancer returned & spread… the chemo this time round is making him really poorly i feel so helpless i guess i think im just hoping thers other people who would like to talk & supporting each other, its such a hard time at moment its like wer jus in our own little bubble at moment, i dnt no what to say at times me keep asking are u ok love when clearly hes not i dnt no, i wish I cud take it all away from my hubby & everyone else suffering from this nasty disease
Hello there @Amie_lilly, welcome to the forum. I’m very sorry to read of your husband’s diagnosis with Hodgkin lymphoma (‘HL’) and how poorly it’s been making him.
I’ll put the great Blood Cancer UK information about HL here in case you haven’t read it, it has lots of links to further information included. Here’s the BCUK information about the different types of lymphomas: Lymphoma - what is it, symptoms and treatment | Blood Cancer UK
I live with a different blood cancer called Polycythaemia vera ('PV') and can’t offer personal tips relating to HL, but I would say that it’s lovely you’re here to support your husband and knowing he has you looking into his illness must be really comforting. I hope you have your own support too?
We forum members can’t offer medical advice, and our conditions are so unique to each of us, but I know the lovely Blood Cancer UK specialist nurses can answer your queries and point you towards further resources. Their number is 0808 2080 888 and they’ll be back Monday morning.
In the meantime, if you use the search box at the top or Related Topics below you’ll find other forum members who have shared about their experiences with HL. I’m sure others will be along once they find this post of yours, I know of other members and even staff at BCUK who live with lymphoma and have posted on the forum.
Hope that helps a little @Amie_lilly, do please keep us posted about how you and your husband get on. Do consider reaching out to others around the forum.
I’m really sorry to hear your husband is feeling so poorly. It must be so hard to see.
I remember how hard it was for my husband when I was diagnosed with follicular lymphoma. I had a couple of ops and radiotherapy and really worried about him and who he had to talk to, especially when I was feeling low. Therefore, I’m really glad you have reached out to the forum as I know there will be others who can share there experiences with you.
The support line is great so if you think it would help, please give them a call.
is there somebody that you can talk to and be honest with about how tough things are. It can be hard being in your own little bubble and trying to stay strong.
Please keep posting. We are all here to help. You need to take care of yourself to.
Morning @Amie_lilly
Welcome to the forum, though I am so sorry you and your husband are going through such a tough time. That “little bubble” feeling is something so many partners here describe; it’s incredibly draining watching the person you love go through such a rough time with treatment, especially after the blow of it returning so soon after remission.
I was diagnosed with lymphoma back in 2018, and I remember how taxing the treatment can be and how hard my husband found watching me experience it.
Please don’t be too hard on yourself for asking “Are you okay?”—even when you know he isn’t, it’s just your way of letting him know you’re right there with him. I know I appreciated just being asked - my husband always used to say “ I know you are not ok so I won’t ask , but is there anything I can do to help” Often, just sitting in silence together or holding his hand says more than any words can.
It’s also completely exhausting for you too, so please make sure you’re looking after yourself while you’re supporting him.
This forum is a brilliant place to speak to others realise that there are others walking a similar path.
The Blood Cancer UK Specialist Nurses: They are wonderful to talk to, not just for patients but for family members too. If you’re feeling overwhelmed or don’t know how to handle the side effects he’s having, do give them a ring.
Thankyou for your reply I appreciate your lovley words, kind advice & the nurse contact information i will keep a note of them thankyou. its very true about just holding his hand it can mean more than any words my hubbys reallyunwell this week sick, headache, painful bloated tummy really fatigued but cant sleep its hard feeling so helpless hes so low bless him the team have stopped his chemo this week because its not working thy dnt think it will make any more difference so thy have suggested trying immunotherapy I hope with all my heart it helps & take away his symptoms
thankyou for your reply, i appreciate everyone’s kind words such gud advice too! if i can help or support anyone i am here too. It is tough atm its definitely a roller coaster! going hospital every week wer finding thy are more positive 1 week like last week all going to plan, this week totally upside down! But u go with the flow Duncan dnt you, u jus have to ride the coaster wether u like it or not I hope your ok .
Thankyou for your supportive kind words it means a lot I am thankful of the bcuk forum otherwise I wouldn’t have anyone who understands fully. I have family who are supporting us & close friends they have been brilliant im grateful we have them in our lives im sorry to hear of your cancer Iv not heard of tht one before but I hope you will be ok I am here for you or anyone
Hubbys not doing great this week he’s got nausea, sickness & painful bloated tummy to say the least so he’s not eating much, hes so fatigued he cant do anything hes getting really low now jus being fed up so taking each day as it comes atm.. im sure ther will be better weeks thankyou for the links & nurse details I hope your having a gud week
You’re very welcome @Amie_lilly, isn’t the forum great? People here really do understand, which can feel so helpful when these horrible illnesses can make us feel so lonely.
May I just say it’s very kind of you to be so thoughtful of other forum members when you’re going through your own worries, and thank you for asking how I am. The Polycythaemia vera ('PV') I live with is a rare one but it’s quite manageable now so no need to worry about me, use that energy for you and your husband.
If you haven’t told his specialist about the nausea and other symptoms then I’m sure they could suggest ways to minimise those beyond stopping his chemotherapy. There are plenty of medicines I’ve read other forum members mentioning, some are mentioned in that red link above.
The BCUK nurses can also suggest ways to manage those symptoms, so do consider giving them a free call on 0808 2080 888.
Hope that helps a little @Amie_lilly, I’m sorry your husband and you are going through it right now. I’m glad you’ve got support around you and do consider leaning on others at stressful times like this.
Morning @Amie_lilly
You are most welcome it’s why we are all here.
I am so sorry to read how poorly your hubby is—that bloating and lack of sleep is just exhausting for you both.
It’s a lot to take in when the treatment plan changes, but hopefully, the immunotherapy will be much kinder to him. It has worked wonders for a lot of people and I know I found it very easy.
In the meantime,do speak to the nurses and ask them specifically for help with the bloating and headaches—there’s no need for him to suffer through those while you wait for the new treatment to start.
Hi @Amie_lilly, I am really glad to see that you’ve been receiving brilliant support from the community. I don’t want to duplicate what’s already been said, and so thought I’d just pop in to say hello, both as the Forum manager and as someone who has had Hodgkin Lymphoma myself (diagnosed at 30).
@Jules is right that immunotherapy has made a real difference for many people with Hodgkin lymphoma. We, Blood Cancer UK, have a page specifically about treatment options for relapsed Hodgkin lymphoma that might be helpful to look at, if you haven’t come across it. And as @Duncan and @Jules say, it would be worth letting the team know about the nausea, bloating, and sleep difficulties if they don’t already have the full picture, just so they can keep him as comfortable as possible while things settle.
And a word about you, if that’s okay - you’re carrying a huge amount right now, and it’s easy for your own wellbeing to slip down the list when you’re focused on someone you love. The Support Line is there for family members and carers too, not just patients, so please don’t feel you have to keep everything together on your own. You can call them on 0808 2080 888 (option 1) or email support@bloodcancer.org.uk.
i guess i think im just hoping thers other people who would like to talk & supporting each other, its such a hard time at moment its like wer jus in our own little bubble at moment, i dnt no what to say at times me keep asking are u ok love when clearly hes not 
i dnt no, i wish I cud take it all away from my hubby & everyone else suffering from this nasty disease 
my hubbys reallyunwell this week sick, headache, painful bloated tummy really fatigued but cant sleep its hard feeling so helpless hes so low bless him the team have stopped his chemo this week because its not working thy dnt think it will make any more difference so thy have suggested trying immunotherapy I hope with all my heart it helps & take away his symptoms 
It is tough atm its definitely a roller coaster! going hospital every week wer finding thy are more positive 1 week like last week all going to plan, this week totally upside down! But u go with the flow Duncan dnt you, u jus have to ride the coaster wether u like it or not 
I hope your ok .