Hi, my 1st post

Hi and sorry you have had to join us, treatment is never as bad as we fear, I had 8 cycles of rchop which will be one of the treatments they may well be considering for you. The other key point to share is lymphoma is not like solid tumour cancers, the treatment goes everywhere, where your lymphoma is presenting and treatment is normally very effective. It helps if people know what type of lymphoma you have and any questions just ask, you will get all the support you need to help you get through this.

John  

Hi John thanks for msg, not 100% sure what type of NHL it is will ask again I know it's incurable. They have discussed previously treatment for when I need it I just didn't expect it to be so soon and struggling to come to terms with it. 

Johnr is a very good source of information. We have both been through a lot of diagnostics, procedures and treatment and we are both still here. I, for one, am delighted to be anywhere. There is much fear and apprehension regarding treatment, but all of this must be viewed in light of what the lymphoma will do without treatment.As john rightly mentioned, lymphoma is treatable at all stages. Some call it a "liquid cancer" and it flows in the lymphatic system (part of your circulatory system) as well as in the blood. Thinking about it, that is precisely where the treatment goes - the lymphoma has no place to hide.

Additionally, treatment is custom tailored to you and your individual situation. As much of an annoyance as treatment may be, it is far less so than the cancer itself. If you experience negative reactions, or if side effects become onerous, treatment can be adjusted, slowed, or stopped for a time. Other regimens may even be substituted and they might be even more efficacious.

The bully has not only entered the room, he is now threatening. Time to rise to the challenge.  

Hi again, it sounds like its a low grade lymphoma and most people with low grade have follicular NHL so it may well be that type. A good tip is to take a note book when you go to consultations as often a lot is said and only half is remembered, pre covid we always advised take someone a long so you can share what you both heard. The note book also lets you write down any questions and by having them with you you don't forget to ask. If by any chance you have a consulate who does not explain things well or spends time explaining things, don't be put off and persevere and make sure you get all the information you need.

john

Hi again Izzywoo and good to see you managed to navigate across to the correct group.

Information is key and you have received some great advise. Totally agree with getting a note book and start putting your thoughts and questions down. 

As John has said in normal times we would always say have someone with you to hear what you miss (90%) so do ask if someone can come with you, some hospitals are allowing this to happen now.

But use technology to its full.... hit the speaker button during phone appointments. Have someone sit in on video calls.... and remember you can ask to record everything.

Make sure someone takes you to an appointment and then immediately sit and unpack the meeting while it’s still fresh in the mind.

We are around to help you navigate this.

I was far too modest in my appraisal of your worth, john! I remember virtually nothing from my first consult.

I just want to say thank you for all your advice and support it's quite overwhelming. I have written down a few questions for my appt and my husband is coming with me. Just trying to get through the next few days until I get some more information, I am still worried and very unsure of what my journey ahead will entail and I am trying to stay positive, as I said your support is very welcome. You are all very inspiring.

Information is key so yes, always have a list of questions ready as this helps reduces the noise between the ears.

State you have a number of questions early on in the appointment.

I work on a 6 Ws and an N set of questions.

What...

what type of blood cancer is it? (the exact name and stage)

what is the plan to move this forward?

what treatment(s) are you getting? (The exact treatment name)

Why....

why is this route being proposed?

why is this treatment better than others?

Who....

who have the team discussed your case with?

who are my contacts? (name and numbers etc of your Cancer Nurse Specialist if they have one)

Where, When and how long……

where will this be done, will it involve inpatient stay, how long?

when will this be done?

….. and how long will the treatment be? Number of treatment cycles?

Worry’s...... about the process.....

I have Spinal Osteoarthritis and hours of Radiotherapy did not go together well.

Never....

never leave an appointment wishing you had asked an important question!

Hi, I was diagnosed last March, two days before lockdown. The whole thing still feels like a blur as RCHOP chemo started two days later. I’ve got/had both high and low grade NHL in my neck, spleen and vertebrae so stage 4. I can honestly say chemo didn’t make me feel physically ill and it went really quickly. I was worried sick too but please try to think positive and keep your sense of humour, it’s the only way! You’ve got this!! 

Hello  I completely understand how you feel as a cancer diagnosis comes as a shock to everyone. What has helped my throughout my Burkitts NHL treatment is the following:

1. why not me?

2. life is unpredictable for me but then again for everyone whether they’re a cancer patient or not

3. a poor prognosis is based on generic stats and not on me and what I’m capable of

4. find the small things that make me happy and create many happy moments around them

5. make the happy moments last 

6. there’s so much care and love around me I unfortunately failed to see and truly appreciate before my cancer 

7. never block my moments of sadness, anger and tears but also never block my moments of happiness, peacefulness and laughter - I’m entitled to them all!!

Results are scary so it’s ok to be scared  .. we’re all here for you