Recently Diagnosed

Hi Gina94 and welcome to this corner of the Community although always sorry to see folks joining us. I am Mike Thehighlander and I help out around our Lymphoma groups.

I don’t have Hodgkins Lymphoma but 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’ is different I understand this journey rather well unfortunately.

The time it takes to get a clear diagnosis then the intel shock of being told you have a blood cancer plays with the brain..... but its important to 'get' at this early stage that this is very treatable with great results..... yes it may be hard work at times but this will pass.

Do watch where you look for information, a random google search will give you a 1000 answers and only a few will be up to date and helpful.

Could I suggest you check out Lymphoma Action, a small, but very active UK Lymphoma Specific Charity who have lots of great information, videos and run regular regional online Lymphoma support groups and indeed a very great Lymphoma Buddy Service.

You don't say where you are based but talking to people face to face can help a lot but during these strange times it’s not that available but do check to see if you have any Local Macmillan Support in your area has opened up. Do also check out for a local Maggie's Centre as they run very good one on one support and great Heamatology Support Groups.

The treatment information you are given to read can be challenging as the side effects can all sound daunting...... but people don’t have every side effects and when these do come along everyone experiences various levels and not all are bad. If we asked 10 people with the same condition who had the same treatment you would get 10 different answers.

These are some useful links for you to have a look at:

Nausea, remember not to suffer in silence when it comes to nausea there are lots of tools available - but your team need to know how you are getting on.

Fatigue may well build up over time so take each day as it comes but at the same time keep some activity going as this does actually help overcome some of the fatigue. During my 6 cycles of R-EPOCH I was on my chemo for 120 hrs 24/7 at a time and the main issue I had was fatigue but my nurse team told me to keep active so I walked the ward corridors with my chemo stand after every meal and actually did a few miles a day.

Avoiding Infections obviously is very important but you will totally get this during these challenging times.

I would also highlight the importance of drinking lots of water as this will flush out all the toxins released by the chemo and protects your kidneys.

You most likely will have lots of questions so ask away and someone will will come along and help out ((hugs))

Hi Gina, 

I'm sorry to hear about your recent diagnosis! I was diagnosed back in march with Hodgkins, at the age of 27 - so please feel free to message me about anything!

Definitely agree with Mike though, avoid googling! Stick with Macmillian, and Lymphoma Action - there's a Facebook support group for Lymphoma Action and its been a great support to dip in and out of whenever I needed some reassurance but maybe silence the notifications as it can be overwhelming if you aren't having a good day! 

The main thing to remember is that its one cancer that's very treatable especially at our age - and now you've got a diagnosis, it's a road that despite tough, one that means you're moving in the right direction. 

Paige. X 

Hi Paige, good you are finding the LA group helpful and I hear the Young Persons Online support group is great  

So sorry to hear of your diagnosis! I was also diagnosed at 27 years old this past October, also because of a lump on my neck and started treatment on 19th Nov. I hope you’re getting on okay with your treatment. If my maths are right you should be due for a PET scan just after your fourth treatment so I hope it goes well for you!!! I’ve just had mine which was negative