Difficulty coping emotionally

Hi again Eifionh and welcome to this corner of the community.

I was diagnosed way back n 1999 with my type of rare, incurable but treatable Skin NHL (CTCL) Stage 4a so although my Lymphoma ‘type’ may be different I know this journey rather well.

First, what exact type of NHL do you have?

Having treatments like R-CHOP can be full on both physically and mentally……. tiredness, irritability, restlessness, sleep issues etc are all part and parcel of the journey…… then add in the emotionally and psychological side of being on a cancer pathway…… I totally understand where you are at.

The issues are had to separate out as they all tend to crossover. It just takes time to sort out the various elements of the journey, what can you pinpoint as cancer related, treatment related and just your body dealing with all the stuff at the same time.

As I said I have been on my journey for coming up to 23 years (hit my name to see my story) and the main lesson I learned very early on was that all the the bumps on the road (tiredness, irritability, restlessness, sleep issues etc) are temporary, they don’t last forever and some sense of normality does return …… but not as quick as we would often want.

’Talking’ with others who are navigating the sand journey can help a lot. This community is here and can help but I always highlight the Lymphoma Action. Lymphoma Action is a small but very active UK Lymphoma Specific Charity who have lots of good reliable information, videos.

They run regular Regional Lymphoma Online Support Groups for both patients and Carers and a great Lymphoma Action Buddy Service where people can be linked up with someone who has walked the same treatment journey.

Always around to chat more and answer questions.

Hi Eifionh. Everything Mike said is gold.

As for sleep, I had a similar issue at some point while on chemo. When I realised I was scoring an own goal with all the stress I decided at some point to try and take my attention off of it completely, sleep when I could, rest when I could, ignore completely the day/night cycle if I had to. Not sure that's good advice in general but it worked for me. 

Speed of recovery may differ from one person to another. At some point after my last chemo I decided it was time for me to do more, physically. Quickly regretted being so rash but was also pleased at being able to complete the walk that day. Promised myself I'd wait a bit longer, then did the same again two days later. Regretted it a little again, but not as much as the first time. And so it goes.

While on chemo I made sure not to take anything without clearing it with my oncologist first. He had no objections to my taking some vitamin and mineral supplements, so I took some, making sure not to overdo it either. 

Distractions. For me, delving into a particular YouTube channel to learm more about certain aspects of aviation provided the perfect escape, on those days I was able to focus enough. Made me forget, even if only for half an hour, but that did a lot to "recharge the batteries." I'd go with anything you like, be it reading a book, knitting, watching the football, etc.

Welcome to the forum.

I have high grade NHL.  

Hi again, there are a number of different types of High Grade NHL

Do any of these links sound like the one you have?

High-grade B-cell non-Hodgkin lymphomas

• Diffuse large B-cell lymphoma (DLBCL) and other large B-cell lymphomas such as:
  • Intravascular large B-cell lymphoma
  • Primary mediastinal large B-cell lymphoma (PMBL)
  • Primary cutaneous diffuse large B-cell lymphoma, leg-type
• Burkitt lymphoma
• Primary central nervous system lymphoma(primary CNS lymphoma)

High-grade T-cell non-Hodgkin lymphomas

• Anaplastic large cell lymphoma (ALCL)
• Angioimmunoblastic T-cell lymphoma (AITL)
• Enteropathy-associated T-cell lymphoma (EATL)
• Adult T-cell leukaemia/lymphoma (ATL)
• Extranodal NK/T-cell lymphoma (nasal-type)
• Hepatosplenic T-cell lymphoma
• Peripheral T-cell lymphoma not otherwise specified (PTCL-NOS)
• Sézary syndrome

Hi there 

I had treatment late last year for non hodgkins, DLBCL, I had 6 rounds of R-chop.  Now in remission.  I remember my fourth round being particularly tough, I’d pretty much sailed through the previous three, but the fourth hit me, not just physically but mentally too. However, I got through it and so will you. What I would say is just take one day at a time, please don’t put any pressure on yourself, sleep when you need to, eat the foods that you enjoy and just be kind to yourself.  I know I had problems with sleep, I still do, I think it’s all anxiety related. Have you tried any guided mediations or relaxation apps to help aid sleep?  I use a great series on Spotify called ‘Nothing much happens’ stories for sleep. They are short stories, but the tone and speed in which it’s read makes you fall asleep! I was sceptical…but it works. Just a thought if you wanted to try it. 

Take care and just do one day, or even one hour at a time.

Sarah x

sorry to be late replying, my diagnosis is Stage 2 diffuse large B-cell lymphoma on germinal centre

Had my sixth (final) R-chop last Wednesday.  Some weight loss since the fifth and that’s continued into this week.  Need to change the course of that weight loss somehow.

I have as referred to a Dietitian following my treatment as ai had lost 27kgs so they reviewed my diet and suggested a way forward.