High AND low grade non Hodgkin’s lymphoma

Around 6 months ago I found a lump in my groin. After seeing doctor and consultants they decided to take it out and on 30th October I went to day surgery and they started to remove it. It was under local anaesthetic howeverwhen the surgeon started removing it he found the node was connected to another node and he tried his best to remove that but the deeper he went the sorer it was so he decided he had enough for biopsy. My doctor received a letter dated 7th November saying initial tests found nothing concerning however they had sent it to a specialist for pathology. So I got a call last Tuesday to say my results were back and doctor wanted to see me at his next clinic on Tuesday (3rd December)

So I went with my 5 year old son thinking it is just a blocked node after the “nothing concerning” letter. He told me I had Lymphoma but in the week leading up to the appointment I’d received another appointment for haematologist for yesterday morning ( 5th December) so I went along and he explained I have both slow progressing and aggressive non Hodgkin’s lymphoma. So I had to go this morning for a heart echo and ecg before I start treatments to make sure it’s strong enough for treatment and also to get a baseline. That was ok so on Monday (9th December) I’m booked in for a bone marrow aspiration then chemo starts on Monday 16th December. I also have a ct scan on 20th December. These results will tell exactly what stage I’m at and how treatment will go. I may only need 3 treatments and radiation if it’s localised but I also may need 6 months of treatments.

im a single mum with a 5 year old son and live in Glasgow and ALL my family are in Dundee. I have great friends though which is fab. So can I ask a couple of questions?

 

Will I still be able to look after him myself or am I best organising childcare?

How long can I expect to be in the day centre on treatment days? 

Lastly did your hair start falling out after the first cycle? The reason I ask is I’ve patiently been growing my hair for 2 years after having half shaved off (hairstyle at the time) so I finally got it all the same length I was booked in next week for a trim and a colour. I don’t want to sit and watch it all fall out so I want to shave it off and deal with it as soon as it starts to fall out. I just don’t know if I should i expect it to happen after 1st treatment.

 

Because of the slow grade lymphoma I need to be on Rituximab even after chemo stops for a further 2 years as it’s the slow grade lymphoma that always pops back up so hoping this will prevent it. I can’t find a list of side effects of this drug. I will get it every 2 months for 2 years

 

i can ask my macmillan nurse on Monday during bone marrow biopsy but I always think I know all the questions and when they start talking I forget them. I did write questions down but forgot the paper

  • Hi, I am a 42 year mum of three, youngest 7.

    I was diagnosed with non hodgkin in October, it's high grade, also in neck and abdomen so was very painful. 

    I've had two rounds of RCHOP, have four to go. If I'm totally honest with you, yes, I would get childcare, I'm not trying to scare you just being honest. I find for four days after chemotherapy I can barely gt out of bed, my mouth gets sore, headache, dizzy and no appetite.

    Prepare and freeze meals. Pull in all favours off people. Saying all this some people get hardly any symptoms.

    Yes, to your question my hair has come out. 

    It all sounds so scary but you will get through it, I feel blessed that it's curable, its made me look at life in a different way, I'm excited to get this done and live my life. 

    Di, good luck, hope this helps x

    Claire 

  • Thank you for your reply.

     

    it really does sound awful. Dreading it tbh. One last question (sorry)

    how long can I expect to be at the day unit for chemo? So I know what to expect in regards to childcare?

     

    darrelle x

  • 3 hours, not too bad. 

    Good luck, let me know how you get x

  • Oh that’s actually not bad I thought I was gonna be there the whole day 

     

    thanks for your help

    darrelle x