Hello

Hello Nigda,

You sound like me 6 months ago. I've just finished my 5th cycle of ABVD (dropped to AVD after 2nd cycle). It hasn't been easy, a bit of a rollercoaster ride but overall I've felt I've been well looked after by the all the health professionals and have had great support for family and friends.

It's fine to be scared, lots to take in and fear of the unknown.  However, as you say once you know the routine things won't seem so scary. This is true.

Take one day at a time. Listen to your body. I found some days I could very little and others I felt well enough to do anything I wanted. Eat well, stay hydrated, take gentle exercise (when you can) and don't be too hard on yourself!

Take help from family and friends. It can be lonely, there is support out there from people such as Macmillan. Check out Lymphoma Action. They have a buddy service if you feel that might help.  I've kept a diary (not every day just now and then) to write my thoughts down, this has helped me.

Wishing you all the best with your first treatment.  You've got this!

X

Hi Nagda Teach70 and a warm 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 but I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable type of Low Grade NHL eventually reaching Stage 4a so although my Lymphoma / Blood Cancer ‘type’ is different I do appreciate the challenges of this journey rather well.

You may find this link helpful with regards to Top Tips for the day of your Chemotherapy and your aim to drink plenty a d keep active is great - this will help you a lot.

Everyone will have a different Side Effects experiences to expect the best but be prepared for the worst but do remember in the big picture of life this period of time is going to be a temporary experience….. yes challenging at times but do-able.

Coming from an education back ground, as much as ai understand your desire to keep continuity for your class group…. You are going to have to concentrate on catering for yourself for a period of time,

Konstance has mentioned Lymphoma Action. Lymphoma Action is the only UK Lymphoma Specific Charity who have lots of good reliable information, videos and run regular Lymphoma Action Support Platforms for patients……. I highly recommend these groups as there is nothing better than talking with other who have walked the journey.

They also have a great Lymphoma Action Buddy Service where people can be linked up with someone who has walked the same treatment journey. They also have a Lymphoma helpline on 0808 808 5555 where Sharon or Nic will be on hand to give you some support - open every week day from 10 till 3.

All the best for your first treatment and do get back to us as we are here to help out ((hugs))

Hello Nigda - first of all- do have a long distance hug. I live in Kent so unsure of the distance required for this hug.

Secondly, I'm still in bed and want to give you a properly considered reply so this reply is a holding one to acknowledge your message and will put (one) finger to keyboard later.

Thirdly, you ain't lonely; I am now 77 and been where you are in 2019 (Stage 4 HL - stages and their meanings are explained on Lymphoma Action website). And I am still here raging against this horrible, detestable government and irritating fellow volunteers at a local heritage railway (Christmas = panic) and every third week getting an infusion.

Have another hug

Pete X

Hello again Nigda-I am awake (fully?) and want to give proper consideration to your message.

I will not repeat what has been stated by others but to add to the mound of information/suggestions you have received! And my bits and bobs to the pile is based on three lots of treatment since September 2019 - two chemos (ABVD being the first) and currently have completed 10 months of a 2 year course of immunotherapy. My side-effects have been interesting, the first major one, and not everybody has similar side-effects, is hair loss. I became a member of the BBC (Baldy Buggers Club) but as my dear old dad used to say "You can't marr perfection". So what? I was still lovely (well my family thought so).

I repeat, you aren't alone even though it must feel like it sometimes and yes, the sofa can be a great comfort. You have allies in the medical team supporting/treating you. They want to help you beat HL. And one (there might be more than one) of the most useful member of the team, is the Specialist Nurse. S/he acts as support and liaison between the consultant and treatment ward and any other associated medical/social services. S/he has a wealth of knowledge and experience which we patients don't and direct access to the consultant. To ourselves we are one of one. To the Specialist Nurse(s) we are one of dozens. They offer support to patients's families. Use them - no matter how stupid you think they will think of your query, they won't and welcome interaction. At this stage you don't know for how long you will be treated, so talk to them.

Is there a cancer day centre (a Maggies could be closeby - nothing to do with Thatcher by the way) where you (and your family) could be offered a range of support/coping strategies? The Maggies in Oxford where I used to live did a lovely line in tea and cakes. The Specialist Nurse should have a list of voluntary/self-help groups in the area if you feel you could benefit from them.

I obviously don't know your circumstances but if you are member of a teacher's union and due to time off for treatment etc, finances get tight, then the union may have a welfare fund which might help ease one of the pressures you could be under.

Finally - all the best - am happy to natter (and hugs are also part of the service),

Pete X