Hi to all
im new to this forum and hoping for some advice
my mum was diagnosed with non hodgkins over 5 years ago , this was diagnosed after enlarged tonsils
She has appointments every 3/4 months with her cancer doctor but these have been done over the phone since before covid , she has a blood test 2 days before and then the cancer doctor calls her and she hasn’t been back to the hospital for a face to face for over 2 years
she started her chemo just before the Pandemic started and it went well and she has plodded along for the last couple of years doing the best she can with the illness
There have been several occasions where she has been poorly and been managed by antibiotics given by her GP
she has gotten a lot more tired and more bad days than good over the last few months
last week she had to call an ambulance because she felt very ill, she was sick, tightening around her abdominal area and very light headed and dizzy (she’s been having dizzy spells for a few months now) the hospital kept her in A and E overnight and run some tests
the following morning I arrived at the hospital and the doctor came to speak to us.
now firstly my mum believes ignorance is bliss and will not hear anything that is bad , she gets very upset (we lost my dad to lung cancer very quickly 4 years ago and it was a terrible time) from what the doctor said and what my mum would allow him to say is that the lymph nodes where in her stomach but my mum stopped him there. The doctor said he would refer he back to the cancer dept and they would be in touch
ocer the last week she’s been struggling with indigestion, unable to burb and very uncomfortable in that area
the appointment has now come through for next week , I will be asking my mother to allow my to speak with the doctor so I know what we are dealing with
can anyone or has anyone got a similar story or know if it’s likely that it’s spread to her stomach and what is the likely outcome ? I do appreciate everyone has a different story but my head is all over the place and just a little bit of direction would help
my mum is 74 years old.
x
Hi Shaza24 and a warm welcome to this corner of the Community although I am always sorry to see folks joining us. I am Mike and I help out around our various Lymphoma groups.
I was diagnosed way back in 1999 with a rare, incurable but treatable type of Non Hodgkin’s Lymphoma Stage 4a so although my Lymphoma ‘type’ may be different I do appreciate the challenges of this journey rather well.
Sorry to hear about your mum, you don't actually say what of the 60 types of Lymphoma your mum has...... some types of NHL, like my rare type is incurable so it can sit dormant for weeks, months and even years (even after treatments) and can show it's face anywhere in the body...... like most blood cancers it can return anywhere............. and the stomach area is one of the many presentation areas.
A return like this is often referred to as a Relapse, I relapsed multiple times over my 23 years so we just moved through the different treatments available so generally a relapse can be treated just the same as her first presentation but as you say everyone is different.
You do need to talk with her consultant as it's the only way you will get a clear understanding as to what is going on and as to what the plan is
Always around to help more or just to chat.
Hi again Shaza24, sorry you have not revived any replies yet but in the meantime 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 run regular Lymphoma Online Support Groups for 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 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.
Always around to chat more.
