My wife was in hospital for 11 days and discharged on 10th October.
On 25th October she was confirmed as having Hodgkin lymphoma.
She finally had her first chemotherapy session on 16th November
During all of this time she has “been unable to lift her head from the pillow” as she describes it.
She can only shuffle walk and is continually. very tired and sleeps, at least 16 hours per day.
Has anyone had similar experience, and all there any words of advice or comfort you can give her?
Hi Dicky and a warm welcome to this corner of the Community although I am always sorry to see you joining us and to hear about your wife.
I am Mike and I help out around our various Lymphoma groups........ I don’t have Hodgkin's Lymphoma but I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable type of Low Grade NHL eventually reaching Stage 4a in late 2013 so although my Lymphoma ‘type’ is different I do appreciate the challenges of this journey rather well.
What your wife is experiencing is unfortunately rather normal for a lot of folks....... Cancer and Treatment related Fatigue is one of the side effects of having a Lymphoma diagnosis and a treatment side effect.
The problem with fatigue is the less you do the worse it gets..... as the bodies muscle mass start to reduce meaning normal activities gets harder then the recover takes longer - it is actually a vicious circle.
Yes you sleep when the body says sleep but there comes a time that setting some very simple daily activities can help the body remember what it's supposed to do.
My journey is very complicated (see the link at the bottom) but during my main chemo I was able to keep active and this was the same during my first Stem Cell Transplant but during my second Stem Cell Transplant I became very ill so was basically bed bound a lot.
But my wife insisted that I was handled onto a wheelchair and put under the shower every day and she helped me wash and shave...... but this was not enough to protect my muscle mass so after my 4 weeks in hospital I left in a wheelchair and had to have Physiotherapy twice a week for about 3 months to get me up and walking.
So from my point of view and our lived experience the more 'little' activities she can do will help her a lot........ my wife Fiona called it 'tough love'
It's a hard time for you both but the one thing to keep in mind is that this period of time is temporary and will pass.
Always around to chat.
Hi ,
I was diagnosed with HL in 2019 . My first treatment was fine for a few days , then was exhausted and everything ached then second week I started to feel a bit more normal, that was the pattern every time I had treatment. I just rested when I was tired and when I felt ok I pottered about , went out and kept myself busy . Physically I was ok but my mind was mashed , I use to cry over nothing ( my poor husband never knew what to expect!!!) my husband was patient and kind and most of all just listened to my fears and made lots of cup of tea !!
my advise is rest, eat well and drink loads of water especially on treatment day and a few days after ( it really helps) and keep ticking each treatment off ..
I joined HL group on Facebook and everyone there are so kind and helpful and no question is too stupid so might be worth checking that out ?
if you want anymore help please feel free to in box me but assure your wife everything she is feeling is exactly right .. it’s awful , sad , hard but hopefully like me she will get better and it will be a memory ..
sending you both lots of love and prayers 
Lisa
Hi Mike, Thank you for your detailed and very informative reply. It gave my wife more hope
Hi Lisa, Your experiences can be related to easily by my wife. Thank you also for your FB suggestion. It was a very informative and kind reply thank you
Hi again Dicky, good that you found my post helpful.
You may want to check out the Lymphoma Action website. Lymphoma Action is the only UK Lymphoma Specific Charity who have lots of good reliable information, videos and have a number of Lymphoma Action Support Platforms for both patients with a few groups specifically for Family and Carers...... 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 can be linked up with someone who has walked the same treatment journey.
They also have a Lymphoma helpline on 0808 808 5555 where Sharon or Nic will be on hand to give you some support - open every week day from 10 till 3.
Hi Dickie ,
im glad I could help a little bit but please feel free to ask me anything . My treatment was ABVD , the BEACOPP, E shap and finally Brentuximab.. so it wasn’t straight forward however it got me in remission in the end and I am fully recovered and feel great so please tell your wife we are all thinking of her , she can and will get through this as awful as it seems now ..ohh and sending you love too , it’s tough being the partner .. my husband was brilliant but I never lost sight of how hard it was for him and the rest of the family and friends, with you being so supportive, us “patients “ would not get through it !!
lisa
