Just starting chemo, after being on W&W for about 20mths

After my last appt I mentioned a cough and breathlessness , which I had put down to a virus; fatigue which I put down to looking after my husband as he’s been diagnosed with Parkinson’s Plus, which is a fasting progressive condition. I’ve also been dealing with incorrect medical records, he nearly died following a traumatic catheter insertion, so my stress levels have been sky high. I had a PET scan which has shown a 5cm mass in my chest, where the trachea divides to go into the lungs. I had a biopsy the following week, then consultant rang the next day to start me on steroids. Saw him on the Tuesday, along with my 3 children and he’s decided not to wait for biopsy results, as he’s assuming it’s gone from low grade to high. He’s going with the most common lymphoma large B cell, for now. Chemo and antibodies were given on Thursday, all good. I’m feeling a bit out of sorts now and yesterday I used my husband’s toilet spray as a deodorant.

Im feeling really guilty now, as on the day of my treatment my son and I were just about to leave when my hubby fell over. Chris picked him up, cleared up his breakfast, checked he was ok and we left. It as only yesterday that I saw the grazes and bruises he had and not until last night did I realise I should have had him checked over, as he’d had a cataract op the day before. He assured me his sight is ok, but again it’s really affected his confidence and I feel bad that I’m having to put myself first for a change. We have lots of support around us, I have arranged a care assessment for us for later this week. My daughter saw how much I do for him, so she’s looking to see if he will qualify for nursing care. 
mom so glad there are apps to sort meds, as I have a crate full to take on different times during the cycle

Can I ask how people have coped caring for someone and any tips on treating side effects of chemo please. I have researched but personal stories and tips I find work better xx

  • Hi I’m 49 year old male diagnosed with large bcell lymphoma in my lower jaw on August 14th had 1 st Rchop chemo 8 th September. After 13 days I’m still bit fatigued my sleep is also scattered, waking every couple of hours for toilet urine. Basically I’m just trying to eat in small portions throughout the day to get my immune system back up before next chemo on 30th then again 3 weeks after. Coming of steroids too has messed up my sleep and aches in muscles. It’s important to drink water throughout day to washout medications and basically dead cancer cells, I force a banana and weetabix in me by midday then watermelon in afternoon then soups or chicken dishes with rice. My wife has been brilliant as she is also a cater to my autistic son . I too worry about the extra pressure she has taken in . I’ve total given up work to focus on getting better. High grade lymphoma are very treatable and can be cured not just remission. I hope your family and you especially find the right balance to get through these dark but temporarily days take care

  • Thank you for taking the time to reply to me, I will take your advice re food, at the moment my appetite is good but it’s early days. My sleep and waterworks are just like yours, my body clock has reset to 5am, where I wake with a flushed face but then eventually I do get back to sleep. I pleased my cough has improved a bit, as originally it was so bad I could barely speak, let alone hold a conversation. I wish you well with your next treatments, and so glad you are being looked after by your wife, as it is a strain on those around us x