A week ago my boyfriend was diagnosed with hodgkins, and today he started his first round of treatment.
I am finding it really hard to stay strong, and knowing he will struggle with the treatment is really challenging for me to understand as I hardly ever see him in pain or ill, I’m usually the one who is ill and needs that extra care haha.
I really want to be there for him in every step of the way, and I need advice to cope through it all.
Hi mary325 and a warm welcome to this corner of the Community although I am sorry to hear about your boyfriend’s diagnosis . I am Mike and I help out around our various Lymphoma groups.
I don’t have Hodgkin lymphoma (HL) but I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable type of Low-grade non-Hodgkin lymphoma (CTCL) eventually reaching Stage 4a in late 2013 so although my Lymphoma ‘type’ is different I do appreciate the challenges of this journey rather well.
As much as this all feels traumatic and impossible….. HL is very treatable with good results.
You need to trust in his clinical team….. they are doing this daily and will take great care of him.
The first treatment t will start to make a difference, yes the journey may get tough but this can be done.
You may find this link helpful Top Tips for the day of your Chemotherapy as it’s a collection of thoughts from people who have been through treatment.
What treatment regime is he having?
As for the journey?.... if we line up 10 people on the same treatment for the same HL we will get 10 different stories...... as the Side Effects of Treatments can be ever so different.
My great CNS initial words were “……Mike you can read all the information available and then start to catastrophise that every side effect that you have read about will happen but the reality is very often rather different….. take each day as it comes, celebrate the good days, endure the not so good day”…… and she was spot on.
I had very aggressive treatment back in late 2013 into 2014 and honestly I did well during it all and this was with me having 6 cycles that had me in hospital 6 nights/5 days on my 2 IV pumps 24/7 for over 120hrs each treatment.
These are some of my simple tips.
Nausea may be a challenge, but remember he must not to suffer in silence as there are lots of tools available - but his team need to know how he is getting on as at times it is trial and error to get the right one. I was only sick once during my 750+ hrs of main chemo and this was down to a bad food choice…… I just wanted some takeaway food….. believe me it’s not a good idea.
Cancer-related fatigue may well build up over time so take each day as it comes but at the same time keep some activity going as this does actually help overcome some of the fatigue..... the less he does the longer the recovery.
There is a real Risk of infection so care needs to be taken to control infection contacts. Generally it takes about 48 to 72 hours for the body to break down and/or get rid of most chemo drugs.
But the effects of the chemo on growth areas and his general immune system will last for weeks and is important to remember that he may well be more open to infections at about days 7-14 as this tends to be the window when his immune system is at its lowest……. then the body recovers in time for the next cycle….. but the more chemo he has the longer the recovery can take so by the end of treatment it could take a few months this to recover completely.
I was given this simple rule for keeping eye on infections…… If my temperature is 37.5°C, repeat in one hour. If my temperature has increased, whether I feel unwell or not, I must contact the hospital.
I would also highlight the importance of drinking lots of water (the aim is 2 litres every day) as this will flush out all the toxins released by the chemo, protects the kidneys and keeps him well hydrated.
It is VERY important to have accurate contact information/names/numbers for reporting in issues especially during out of hours and weekends.
There is no need to be a hermit….. you can go out. I would meet up with friends in a quiet corner of a burden centre….. fresher is a good healer……. The main thing is check that folks visiting you at home are not carrying a bug…. coughing, sneezing etc….. and open the windows and let some fresh air in,
Always around to answer questions or just to chat ((hugs))
Good morning mary325
ABVD is a very effective treatment but it is strong but on the whole this tends to do the job and life can move on.
As I said I was only sick once during my main chemo but was often nauseas but we just kept changing the ant-nausea meds….. even going back to the first meds again as the symptom and the the body does change over the treatment……My story is rather complicated See my story as I had to go onto other treatments but I am 8 years out from my last treatment and doing great.
Everyone - both patients and caregivers look fir snd accept support in different ways…. this group is just one of a number of support platforms.
If you are in the UK you may want to check out Lymphoma Action.
Lymphoma Action is the only UK Lymphoma Specific Charity who have lots of good reliable information, videos..... basically all things Lymphoma....... pre, during and post treatment.
They run regular Support Platforms both for patients and caregivers- I highly recommend these groups as there is nothing better than ‘talking’ with other who have walked the journey.
They also have a great Lymphoma Action Buddy Service where people (patients and caregivers) can be linked up with someone who has walked the same treatment journey.
They also have a Lymphoma helpline on 0808 808 5555 where you can talk with someone and get support - open every week day from 10 till 3.
I also volunteer with Lymohoma Action and a way of some encouragement you may want to listen to this link Kicking on - Robbie Fergusson. back in Aug 2021 I did a Lymphoma Voices Interview with Robbie Fergusson who was diagnosed with Hodgkins Lymphoma back in 2013 at the age of 20. Robbie goes on to talk about his diagnosis, treatment, recovery and eventually getting back to playing professional Rugby Union, playing for the Scotland 7s International Team and representing Team GB in the Rugby 7s Team at the Tokyo 2020 Olympics.
Always around to chat ((hugs))
