Tips to help adult DD just started BEACOPP for stage 4 lymphoma

[IVbumble]

Looking for simple things that might help DD feel more comfortable throughout the process. I can see it's really hard for her - everything has happened so fast & she feels so exhausted already - we still have another 3 or possibly 5 cycles to go. She has DS6 & DD2 who are also struggling with her not being at home for periods of time during the diagnostic process. We know there is a high chance of eliminating it but it's how to deal with things until then. Any ideas would be appreicated.

Im sorry to read this. I had cancer when my children were small but not as young as your daughters. The probably obvious advice I would give is lots of listening when she wants to talk, help with housework food prep and childcare. A comfie sofa and a freshly changed confortable bed with comfy cushions, maybe some easy tv or a book to listen to. When she can, get out into the fresh air with her for a little walk or whatever she likes. My mum , stepmum and MIL did all of this for me and it helped so much. It feels like chemo will never end and I imagine they are going at it with strong stuff to eliminate it asap but it does come to an end and you do start feeling better. In my hospital it was possible to see a therapist alone or for members of the family, that might give you some pointers for the children. I feel for you as a mum watching your daughter going through this.best wishes to you and to your daughter

A cleaner. Food prep and school runs- see if you can get a rota of friends to help out. So her time can be focussed on herself and the kids. Continuity is good for them and knowing what to expect when they can.

Thank you for responding - we understand she is going through the grieving process - for her previous healthy body along with all the physical & emotional impact. We hadn't thought of a cleaner so will look into that. Her husband is good with both DC but I think she is struggling with the idea she cannot care for them in the way she did previously.
DC understand that she is ill - youngest is fascinated by her PICC line. We do mention the word cancer between the adults but she doesn't want to use this word with DC in case anyone at school says 'Oh my x died of cancer'. It has been helpful to write all this down too. Sometimes it just goes round & round in my head. I can't imagine what it's like in her head.

Help as and when she needs it. Me personally, I would have hated a cleaner. A cleaner is actually a lot of work because you have to declutter and put stuff away first. It’s very different to having a familiar person sorting things. Also it’s a whole extra person to have to explain that you have cancer to when they see you in your pj’s looking awful.

What would have helped is childcare, especially when her Dh is away. I need a nap every day. If there are days when no one is around and I have the kids, help so I can have a nap - taking them out for 2 hours. Extra help with childcare would mean Dh could clean and sort the house and meals more easily.

Financial help - the reality is that most people will have to stop work. I’m stage 3 and I’ve had a year and a half off work. 90% of the women my age in my support group have had to stop working. It’s manageable for most people for 3-6 months. After that, it can get dicey. I was made to take redundancy, so I got sick pay for a bit and then a small redundancy payment that kept me going for a few months. But after that, you fall off a cliff edge. It’s very hard to get back into work. If you can contribute financially so that she is able to stay off work as long as possible and her Dh is able to take additional time off to childcare, especially school holidays, in the summer, that will be a huge help.

People often think freezer meals and hampers, but honestly, what is really needed is practical help and money to stay afloat.

@mindutopia thank you for your thoughts - I'm naively shocked by the impact on work - she isn't fit enough to work at present due to some prediagnosis side effects & then just starting chemo last week. She has been in her home working dream job for just 12 months with only statutory sick pay but they are paying her 3 months full pay. I guess they might drop down to 3 months half pay after which we assumed she'd be able to return but it sounds like that idea is more unlikely.

We already are doing daily nap time. I work 2 long days & have always had DGD2 two days a week. Her DH is self employed & has dropped his hours to be at home more often. I think we are still in the denial part of the process & probably only take on board one thing at a time.

I agree with @mindutopia in that financial and practical support is probably more useful than fancy hampers and freezer meals.

I have cancer and as @mindutopia mentions, I’ve fallen off a financial cliff, on receiving only Pip and ESA, it’s dire. Any kind of financial contribution will
help (unless DD’s husband can keep things afloat financially?) Obviously help with the children I expect will be welcomed.

Definitely take one thing at a time, otherwise it all becomes very overwhelming.

Best wishes and thoughts to you all 🌷🌼

I ‘ve lived and worked in France for many years and had cancer twice. Probably about three years off plus back to work part time in the beginning .I didnt lose an euro financially ( state and obligatory enployee/ employer insurance) it makes me sad and furious when I read this. The UK system needs a review it’s not a poor country FHS. I never get mad about being inconvenienced by French strikes btw !!!

I had beacopp for stage 4 lymphoma for six months in 2023. My children were late primary school age and both have SEN. To be very honest I found it brutal, I was hospitalised with sepsis and other complications many times and pretty much bed bound for most of the 6 months. DH had to take over everything with the house and children and his work very kindly gave him 6 months off to do so. My mum also came to live with us on & off to help on chemo days. Beacopp is a very intense chemo but it is very successful, I've been in complete remission since I completed it.

it sounds like your daughter may be tolerating it better than me (I took it particularly badly), but be prepared she may continue to feel weaker as she goes on. It really does take it out of you, I couldn't walk to the end of the driveway by the end and it's only now two years later that I'm starting to get my strength back.

Tips: take all help offered. My cancer nurses were excellent and offered a review halfway through to discuss issues and refer me onwards. They referred me to a dietician (I needed shakes/juices as I couldn't eat) and a physio, who I saw at the hospital and was excellent for helping me regain strength but also just a lovely sympathetic ear to talk to.

My mum was a huge help and I could never have got through it without her. The ways she helped: cooking (for me when I could stomach it, but more importantly for DH and the children), cleaning - especially the bathroom - your DD needs to be really careful about infection, childcare, supporting DH by being there to talk to him about it, and importantly, not being offended by how incredibly down and snappy I was! The chemo drugs and steroids really affect your mood and I was absolutely miserable most of the time. Please don't take it personally if she takes it out on you, you're probably still her safe person to vent to. Ditto her husband, which is why it's great if you can support each other.

I did find it very hard emotionally not being able to care for the children. Holidays, christmasses, birthday parties were all cancelled and I missed so many school events, first day of secondary school etc. I was so frustrated not being physically able to do anything. It was awful at the time BUT now I'm 2 years out, those six months feel like the blink of an eye and children are so resilient, they barely remember it now. I think the best thing you can do for your daughter is just weather the storm, be there for her and remember there is light at the end of the tunnel. She will get through this and there will come a day when she's able to do all the things she's missing.

sorry if I've been very negative, but honestly for me I wished I'd had a more realistic expectation. Like you it all happened very suddenly and I was not at all prepared for how intense that particular chemo is. I actually switched down to AVD after my mid treatment scan showed a good response. If that's an option for her I found it easier going in terms of infections/hospotalisations, although still tough in terms of fatigue.

if you have any specific questions feel free to ask. I'd also recommend the lymphoma action Facebook group, I often posted on there and got a lot of support from others who'd been through the same thing

Thank you so much for sharing your story @namechange0998776554799000 - it is good to have a realistic view regarding what is likely to come. DD is on escalated Beacopp which I imagine you may have been on too. Your comments about the children almost forgetting what it was like are very valuable & I'll pass them on. Interestingly DD's dad had a transplant when she was the same age as her youngest so I can ask if she remembers much around that time.
We're hoping that maybe she will not need the full 6 cycles but of course will have to wait till the end of Dec to know anything further.
I'll join the fb group too - it is so helpful to hear others stories & not just to know that you are not alone.

Just thought I'd update with some good news. DD is to start cycle 3 next week. PET scan has shown complete metabolic response which they've said means she only needs 4 cycles in total.
Chemo has been administered via the day unit which they've said is a first for that particular hospital. I know it's made a difference as on the ward for her first cycle the nurse rushed though the Doxorubicin in about 15mins when it's meant to take 30mins. They are more experienced & have a higher staff ratio.
DD is still tired & with no hair now but still in good spirits & now even better due to the scan update.