Newbie

Hi  welcome 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 (HL) but was diagnosed in 1999 with a rare, incurable but treatable type of Skin NHL (CTCL) Stage 4a so although my Lymphoma ‘type’ is different I know this journey rather well.

You have been told this information out of the blue, A cancer diagnosis can bring all types of thoughts into your mind but let’s take a step back.

Lymphoma is the 5th most common cancer in the UK. The treatments available for HL are well tested and on the whole provide great results. Yes the treatment may be full on but are do-able.

My type of NHL is incurable but I am 66 and living a great life in remission. You mention stage, you will see that I was stage 4…… if this had been an other cancer like kidney, lung, prostrate…… my high stage number would have been very bad news - in Lymphoma it is completely different with stage numbers used to identify where your cancer is presenting, what is the best treatment and how long you would be on it.

You need to understand your HL better so do have a look on the Lymphoma Action website. Lymphoma Action is a small but very active UK Lymphoma Specific Charity who have lots of good reliable information, videos and run regular Regional Lymphoma Online Support Groups and a great Lymphoma Buddy Service where people can be linked up with someone who has walked the same treatment journey.

You may also find these link very helpful in getting yourself ready for talking with your Haematologist Questions to ask your medical team about Lymphoma and Getting the best from your medical appointments

Lets look for some of the group members to pick up on your post. You can also look through the various posts (hit the main group name and scroll down) and as always you can hit reply and ask some questions and see if the member is looking in.

Always around to help more or just to chat.

Hello Mike - I'm Pete and (eventually) diagnosed  with Stage 4 H-L in September 2019 and soon to be 77 and on my third course of treatment - oh joy! This is a holding message to you as I've been gardening, haven't eaten and am knackered and want to do your message justice which I intend to do tomorrow.  Meanwhile the reply from Thehighlander has good info.

Remember,as somebody said, if you wake up tomorrow, it is a bonus.

Keep safe -Pete

Thanks mate, greatly appreciated.

No problem, these groups are here to help lighten the load. I wish I had found groups like these 22 years back…… but Google etc was not a ‘thing’ back then so we had to walk this blindfolded at times.

You can see some members stories if they have completed them by hitting their community names.

Always around to chat.

Good morning Mike(s), well, I pondered a bit how best to reply and quickly realised that I would have to be vague and give out some thoughts and pointers. I will park my thoughts how you were told of the diagnosis!!!

I'm sure by now you would have realised that the bloody cancer is full of unknowns unlike, say, a broken leg which has a beginning, middle and end (occasional complications) and a (no pun intended) well chosen path to recovery. H-L has the "how long is a piece of string" hanging over it.

So, trust? Over the years I have been "involved" with H-L treatments I quickly realised that my knowledge was extremely limited. Yes, I could access websites -  Thehighlander has mentiond Lymphoma Action and it is an excellent scource of info and a supportive charity. As I couldn't critically evaluate the websites/treatment offered so went along with what was offered. I did ask the consultant at the beginning "what would happen if I refused treatment?" and as a shot he came back "You will die". Nuff said.

So, how to get the best out of the resources working with you? The staff are on your side. And one of the most important resources are the specialist nurses who act between you, the doctor(s) and haematology department and any associated services (e.g. social services). Hopefully one will be with you when you see the consultant. Use them, any queries etc, don't hesitate- the treaments etc is a partnership.

So, how are you? When professional asks you- be open. We are "trained" to be reticent "yes, I'm alright". If you have problems don't hesitate to let the people know. I didn't say I had severe constipation, as a result of the treatment, thinking I can deal with it myself- I couldn't and ended up in hospital for 10 days!

If logistically possible, join a cancer support group where you can meet people in person- Zoom meetings are a second best but once underway for a few sessions usually work quite well.

Most probably you will, if not already, be "labelled" as very vulnerable. Oh joy unbounded. Although my blood markers, following blood tests, are all good (ask- if they don't tell you!) I am still carefull but not living in a cotton wool bubble. Take and keep control.

When in doubt, give somebody a shout - me included.

Keep safe, Pete

Thanks Pete