Brother

Josie- hello- This is just to say hello and I haven't the time now to do justice to your request but will reply later today. All I can say - from three years chemo/immunotherapy treatment - the people treating your brother are lovely, caring and determined to do their best, no matter how long it takes.

Pete X (and hugs to you, your brother and family)

Hi Josie Wanderer45 and a warm welcome to this corner of the Community although I am always sorry to see folks joining us and to hear about your brothers diagnosis. I am Mike and I help out around our various Lymphoma groups.

I don’t have Hodgkin's Lymphoma (HL) but I was diagnosed back in 1999 with a rare, incurable type of NHL Stage 4a so although my Lymphoma ‘type’ is different I appreciate some of the challenges of this journey well.

This is a challenging time for all the family but the important thing to get is that although the Chemotherapy Treatments used for Lymphoma can be full on but do-able....... with the results normally very positive.

My treatments were rather different as i had long periods of in-patient stays but let's look for the folks with HL to talk about their experiences with their HL treatments.

This link may be helpful as you all prepare for his treatment - Top Tips for the day of your Chemotherapy.

Good support for a teenager will be challenging......... unless he is being treated in a hospital that has a Teenage ward or a ward funded by the Teenage Cancer Trust he most likely will be being seen under Pediatrics with Hematology input....... who/where is he being seen by/at?

Over the years I have been volunteering on this Community we have not had anyone his age post on the site and very few family members but I would recommend that as family you checkout the Teenage Cancer Trust website as you will find some great resources.

However I have along with many others been recently supporting a few family members on another support platform who have been supporting their teenage family through their Lymphoma treatments.

Lymphoma Action is the UKs only Lymphoma Specific Charity who have lots of good reliable information, videos etc. They have a very active Online Support Group that you can join and connect with families who are in the same position. Do remember to answers all the joining questions as this is the only way you will get accepted into the group.

Lymphoma Action also run Monthly Online (ZOOM) Support Groups for Family, Friends and Carers..... I highly recommend these groups as there is nothing better than talking with other who are or have walked the journey.

Talking to people face to face can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing supporting all the family........ but it may be hard to get hime to connect in with these facilities. Our local Maggie's do run teenage support groups so worth a check.

The group is always around to help as best as we can ((hugs))

Hi Josie,

I'm sorry to hear to hear about your brother and what he's going through, it's incredibly tough for both him and you as a family. I know there isn't much I can say to help ease your worries. 

I am a 26yo male who is almost half way through chemotherapy for classical hodgkins lymphoma, I'm having ABVD (most likely what your brother is going to have). I'm also from a medical background myself having worked in the NHS for my entire working life so far. I completely understand that your brother is being reserved about the whole situation and it's a lot for him to absorb right now, but if your brother, yourself or any of your family members would like to message me privately, I am more than happy to answer any questions or give some advice on what to expect in regards to chemotherapy and scans etc, I'm an open book. The treatment tends to develop its own predictable side effects and routines, it's tough, mentally and physically but it is absolutely doable.

The forum is full of wonderful people who will help however they can. I completely understand he may not want to hop on the forum just yet, but again, he is more than welcome to message me and I'll do my absolute best to answer any questions.

Best wishes, 

Calum

Hello again Josie - since ytou first posted about your brother, you have had two replies that I feel covers a lot of ground and much information. I'm at the other end of the age spectrum to your brother, being 77. Reading the published information it would appear that the younger somebody is, the greater the chance of a cure. I really don't feel I can add anything meaningful to what has already been said by others.

As I stated before, those treating him are on his and your side. There are specialist nurses (often Macmillan) associated with the oncology/haematology departments who have vast knowledge, access to your brother's consultant - use 'em. They are there to answer your questions and support you all. Your brother should have been given their details.

All the best for the future to you all (and hugs)

Pete

Thank you for your reply, it’s been hard for him for sure he has just received his GCSE results which he wasn’t happy with so there’s so much to deal with. I hope you are well 

Thank you Calum, I hope you all the best! He is very conflicted at the moment he has had his GSCE results which have caused more stress. I am hoping he joins a support group sooner rather than later, I appreciate your offer to chat very much. He said that he would like that. 
thank you

Josie

Hello Josie thanks for the thanks -your brother is certainly going through it! More sisterly hugs required.

I do hope he does join a support group - they can be very beneficial (he says from experience). Even though I spent years in social work, including supporting people, when I had to confront, head-on, my own position, when given the diagnosis three years ago, I quickly recognised that group support would help me- and it did. Unfortunately I've moved to a part of the country (south Kent) without easily physically accessed cancer groups. My family are lovely and supportive BUT they are going on a voyage of possibly horrible discovery so there is only so much I feerl I can load onto them.

All the best

Pete + hugs

Hi folks I thought I would again do highlight the Lymphoma Action very active Online Support Groups where regardless where you live you can connect with people monthly

Lymphoma Action also run Monthly Online Support Groups for Family, Friends and Carers..... I highly recommend these groups as there is nothing better than talking with other who are or have walked the journey.