New to the group

Hello, Pete here - diagnosed with HL 3 years ago and have had chemo and immunotherapy but doesn't appear to have cured me but at 77 I still volunteer weekly at a Kent heritage railway (maintenence) and organise a u3a group and do daily walks etc. I too had a lump in my neck recently removed and awaiting pronouncement.

So fleets1987 what have I learnt over the past few years (treatments in Oxfordshire and Kent)? And in no particular order.

Bugger and double bugger - nobody is joyful at receiving the HL diagnosis because Big C hovers over and we have been brought up to think the worse. So feel rubbish BUT

You are not alone - there are so many support areas. Family - share - if possible bring a member of family along during discussions - also use a smart phone (with permission) for others to listen in and join a discussion.

All the medics are on your side - they have wealth of knowledge and to them you are one of many they have seen over the years. Importantly they want you to live- physically and emotionally. All medics- whatever their grade - are lovely and supportive. To you, a question you might think seems silly to them butstill  ask it- they respect you. Remember the Trade Union motto (one of many!) "Knowledge is power". And you may feel you need all the power going.

There are specialist nurses associated with your treatment regime- often MacMillan nurses. In my experience they are brilliant because they have knowledge, time and can access the medics/consultants. Get to know them- if you feel lousy, fightened, weary etc then speak to them. It could be you are suffering side-effects from the treatment. They put things into context. And yes your hair may drop out (every bloody hair in my case- so I was a member of the BBC - Baldy Buggers Club - which at least gave my family and friends a laugh - the swines!). And I am still here even though my golden locks have returned somewhat greyer.

Lymphoma Action is an important scource of knowledge and support. They run Zoom support groups. I don't know West Yorkshire but there could well be cancer vol orgs to support you and your family. Use 'em- you don't know what you may bring to the organisation that benefits yourself and others.

Finally, use this forum - you are not alone - and all the best for the future

Pete X

Hi fleets1987 and a second welcome from me to this corner of the Community although I am always sorry to see folks joining us. I am Mike and I help out around our various Lymphoma groups. I don’t have Hodgkin's Lymphoma but I was diagnosed way back in 1999 with a rare, incurable type of Non Hodgkin’s Lymphoma Stage 4a so although my Lymphoma ‘type’ is different I appreciate the challenges of this journey well.

The one big encouragement I can give you is that Lymphomas like HL are very treatable with great results. My type is rare and hard to treat but I am 23 years out from diagnosis and living a great life.

At Tenterden has mentioned Lymphoma Action. Lymphoma Action is a small but very active UK Lymphoma Specific Charity who have lots of good reliable information, videos, webinars….They also run regular Lymphoma Online Support Groups for both patients and Carers/Family and a great Lymphoma Action Buddy Service where people can be linked up with someone who has walked the same treatment journey.

Do also check for a local Maggie's Centre as these folks are amazing for all the family.

As a way of some encouragement you may want to make a cuppa and listen to this link Kicking on - Robbie Fergusson a Lymphoma Voices Interview with Robbie Fergusson who was diagnosed with Hodgkins Lymphoma back in 2013 at the age of 20. Robbie goes on to talk about his diagnosis, treatment, recovery and eventually getting back to playing professional Rugby Union, playing for the Scotland 7s International Team and representing Team GB in the Rugby 7s Team at the Tokyo 2020 Olympics.

Always around to chat at any time ((hugs))

Pete, a huge thank you for your lovely, warm message. And for giving me a laugh too - BBC - a club I am likely to join unfortunately! So far the support has been brilliant from my medical team, my friends and fam, and I've been joining a number of online support groups. People have been so lovely and welcoming and also very forthcoming with answers to some of my Qs and sharing their experiences. Thank you for sharing yours. 

Cat x

Hi Mike. Thank you so much for sharing your experience. 23 years, WOW! So glad you are living a great life and are here helping others. Thank you for the resources links - Lymphoma Action has been an invaluable source of support and information so far and I have just joined one of their Facebook groups. I am also in touch with Maggie's in Yorkshire, thankfully they have the centre at the very hospital where I will be going for treatment. Thank you again for your message and words of support. 

Cat x

Thanks Cat - I'm glad you had a laugh. You think you've got problems- I am having a colonoscopy today - wot fun. Look on YouTube- Billy Connolly and colonoscopy. Finding a funny side to situations (not every one obviously) helps me (and my family) cope. Yes, there is the 3 o'clock in the morning- awake- thinking about future times but I realise it is futile worrying about stuff I can't control. Easier said than done. But- as you mentioned in your first posting - it is your family that also is/are affected. And you worry (and feel guilty(?)) that you have (unwittingly) distressed your loved ones. So plenty of hugs. HL is not your fault. It has not been caused by your lifestyle. It is bloody hard luck and to rewite a phrase of Billy Connolly " You (and I) have Hodgkin's Lymphoma and I wish he would take it back".

I have decided to have carved on my headstone "NOW WHAT?" (My lovely late wife reckoned it should read "Beneath this sod lies another")

Cheers- Pete X

Hi Cat, good to hear that you have connected into the various support networks...... I am actually one of the moderators on the Lymphoma Action FB Group and also help facilitate the Scottish LA Online Support Group.

Over my years we have found our local Maggie's to be an oasis in our times of storm.

((hugs)) 

Love your attitude, Pete!!!!! X