Mind running in circles

Hi daydreamer26 and a very warm welcome to this corner of the Community but I am sorry to see you joining us and to hear your concerns about your partner.

I am Mike and I help out around our various Lymphoma groups. 

For context I have been on my Lymphoma journey for over 26 years first diagnosed way back in 1999 at 43……. when my first rare (8 in a million) ‘incurable’ but treatable slow growing Low-Grade Cutaneous T-Cell Non Hodgkin’s Lymphoma (NHL) was found.

I eventually reached Stage 4a in Oct 2013 when a second, also rare (4 in a million) type of very aggressive High-Grade Peripheral T-Cell NHL was then presenting so I most definitely appreciate the challenges of this journey rather well.

The initial encouragement you should be getting from my first few paragraphs is that even the toughest of the 60 types and sub-types of Lymphoma are very treatable and here I am talking to you 26 years on, turned 70 last Nov and I am living life to the full.

The stress of this is not conducive to feeling healthy…. not accounting for the possibilities of there being Lymphoma Symptoms…..

Stay away from random Google searches as this in itself is a stress generator….. you will get 1000s of links and it just confuses you.

For good, accurate and up to date information stick to the Lymphoma Action website

Lymphoma Action is the UKs main Lymphoma charity and their website has lots of good reliable information, videos..... basically all things Lymphoma....... pre, during and post treatment.

All the links I use are taken directly from their website and I have volunteered with them about as long as I have with Macmillan……

Getting prepared for the Heamatology appointment is very important….. so the links below will help you both to get ready for that appointment.

Top tips for getting the best from your appointments

Questions to ask your medical team about lymphoma

He may not get any clarity at the appointment and you must expect for other Diagnosis tests to be organised like a CT and/or PET scan and most importantly a biopsy as this in itself is the main diagnostic tool…… I have never had a blood tests that highlighted Lymphoma….. but indications as to something not being right.

Controlling the noise between the ears is important so this link will help you with that….

Top tips for managing anxiety around tests and procedures

The main thing to keep as part of ongoing g conversations is that if he has Lymphoma it is very treatable with good outcomes……. even a stage 4 Lymphoma diagnosis is not seen as an issue….. the Lymphoma world is very different from sold tumour cancers…… to the point that some types of slow growing Lymphoma are seen as a chronic health condition and treated as and when required.

Cancer is a debilitating world…… and can throw up some negative thoughts about the future….. but this is Lymphoma.

Any other questions just ask ((hugs))

1. Hi im fran married also started last December with lumps in neck and under jaw had pet scan and biopsy was nhl had 6 rounds of chemo it's not easy but it does get better i feel my neck swollen again but chemo does effect glands n lymph nodes hes got u there which is the best there so many different side effects but rest support and normality really does help 

Hi Fran, I’m so sorry to hear about your diagnosis. He had his CT scan and biopsy 2 weeks ago this Friday. He has an appointment back in the Haematology clinic in the first week of August but I’m hoping if the results are back sooner, then his appointment might be brought forward. We’re obviously going to be concerned if it gets brought forward and if it doesn’t. But we won’t know until we know I guess. We can make assumptions on whether it’s good news or bad news depending on how quickly he gets an appointment. We keep saying if it gets brought forward, it’s bad news but if it remains where it is, it could be good news because why would they make him wait that long otherwise. Just can’t turn our brains off I guess! I hope you’re doing okay. Sending my love to you ️ 

Hi again daydreamer26  having had a good number of biopsies over my 26 years not only for my 2 Lymphomas but also for my Asbestos, Prostate Cancer and false alarms for Skin and Bowel cancers the timings of appointments actually make no significant difference to what you are told

As Lymphoma can be ever so complicated to diagnose and the fact that there are 60+ types the speed of getting results can often be controlled by the need to send samples for specialist testing…… my Lymphoma biopsies have taken anything from 10 days to 6 weeks for results to come back and add the need for results to go before a weekly MDT (Multi Disciplinary Meeting) where the experts then discuss each case…..

I have had phone calls calling me in for an appointment days and weeks early….. often due to filling cancellations, some to give me good news but a few with not so good news.

Lets look for clarity soon.

Hi my husband was diagnosed with nhl out of the blue- only a sore on his lip that wouldn't heal dentist referred urgently- took a month in all to get initial diagnosis but then several months before treatment.The wait is the worst! Lymphoma is very different to what our head deems urgent cancer treat it quick!

Like you my mind was constant- top tip- take time out- do normal stuff or take a long walk together- agree in your head and/or together to dismiss all thoughts of cancer etc for a few hours every day or if that seems too long try 1/2 hour at a time! Find something to concentrate on- we did many many jigsaws whilst listening to fave music just get respite from it! 

Remember he doesn't know what to say either sometimes words don't help! Make memorable days! do stuff you always said you would do! If he needs treatment life will revolve around hospital visits and side effects may mean he not up to doing much! I read up on various treatments just to give my head something yo concentrate on whilst waiting and so i had some idea of what was coming and lessen the shock! 
in appointments ask for plan in writing as you dont take it in! 
Thinking of you, be kind to yourself x

Hi. Thank you so much for commenting. I’m sorry to hear about your husband’s diagnosis. I hope he’s doing well. How crazy that a dentist found the issue and helped. Such a blessing that he had an appointment with them at the time. My partner phoned the Appointments team at the Haematology clinic. His results are back but we’re still going to have to wait a whole month before he’s seen! He has to have another blood test before he’s seen in August with his results which he’s worried about but I think that’s standard practice to have a blood test before a Haematology appointment. Can’t believe we have to wait a whole month for the results! It’s just a cloud hanging over us as we have a busy July and his work gets really busy in August. I also start a new job in a couple of weeks so we’ve got a lot going on. Trying to keep our minds off it though. Thank you so much for your advice, I really appreciate it.