Half way through treatment

Good morning Red36 - Pete here and just woken up and am out soon (volunteer on a heritage railway) so I will give you a considered reply later today. To put myself in context for you, I am 79; diagnosed with Stage 4 HL in September 2019, treatment completed in February this year - told I am in remission (whatever that actually means) and am having one of my regular haematologist reviews next Monday.

Until my reply, have a long distance hug (more of which later)

Pete

Hi Red36 and a warm welcome to this corner of the Community although I am sorry to see you joining us and hear about your challenges.

I am Mike and I help out around our various Lymphoma groups.

I don’t have Hodgkin's Lymphoma but for some context I was diagnosed way back in 1999 at 43 with a rare (8 in a million) incurable but treatable type of Cutaneous T-Cell NHL (a type of slow growing Low-grade non-Hodgkin lymphoma) ……. eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell - Not Otherwise Specified NHL (a type of fast growing High-grade non-Hodgkin lymphoma) was then presenting so although my Lymphoma ‘type’ is different I most definitely appreciate the challenges of this journey rather well.

Our mental wellbeing can for some spiral out of control….. this is a rubbish unwanted journey you are on…… but you are half way to getting this uninvited squatter evicted from your body…… so focus on this encouraging picture of you standing at your door kicking the backside of your Lymphoma as it leaves your house…… and this is a good motivation to push through and out the other end.

Who have you around you that you can sit and unpack?….. this is very important.

You have made a good move coming into this group but there are a number of other places where you can connect in to get support on 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.

You may want to also check out Lymphoma Action. Lymphoma Action is the main UK Lymphoma Specific Charity who have lots of good reliable information, videos..... basically all things Lymphoma....... pre, during and post treatment.

They run various Support Platforms… I highly recommend these groups as this will widen your support base and there is nothing better than ‘talking’ with others who have walked or are walking the same journey.

They also have a great Buddy Service where people can be linked up with someone who has walked the same treatment journey.

The LA helpline is open every week day from 10 till 3 on 0808 808 5555. This is a safe place to talk things through and get support.

Always around to chat 

Eventually Red36 I am replying "properly" to your message - yesterday was hectic.

I am not going to repeat what Mike (The Highlander) has said - wise words. I obviously don't know your circumstances so I can only offer generalisations. What I have learnt following 4 and 1/2 years of treatment is that you must be open and confide with professionals when they ask you "How are you?". They are not just being polite - your "medical" treatment might need to be reviewed and revised. And they would also be very interested to know how your mental health is - again depending on where you live there may be resources to help you.

Now about you being proactive. You should have been given information about a vital group of professionals associated with your haematologist/treatment unit - Clinical Nurse Specialists. These are highly experienced people who can act as an intermediary between you and the consultant/department. Over the years they would have seen dozens of patients and built up a vast body of knowledge. I would bet that they would have seen "you" before and would be able to assist. BUT only you can tell them how you are. In my experience, they are very very usefull. You ask "is this normal?" Dunno - nobody wants cancer - how to cope is the trick. My wife died because of a brain tumour and lived/worked for 17 years after the initial diagnosis/operation and I learnt, sadly from her, to panic when we had to and not before.

Finally - family and friends. Shielding them from your feelings isn't productive although understandable. If the boot was on the other foot wouldn't you want to know? To be able to offer the arm(s) around them. To laugh together. Red36 you deserve hugs and laughs (actually we all do).

All the best - have another long distance hug,

Pete

Hi Red36 - I'm 41 and am also half way through treatment and can definitely confirm that I'm driving myself mad. I started on ABVD and got through 2 full cycles (so 4/12) and then had a 'positive' PET2 scan so have been moved onto escBEACOPDac. 

Weirdly, I suffered SIGNIFICANTLY more with driving myself may through ABVD . I found that the come down from the steroids was particularly intense and so entered a really dark funk (probably better described as full on despair) between Days 4-9 of each cycle. (Worth noting that I also found that if I took too many of the metaclopromide anti sickness pills that it added quite significantly to the depression on those days.)

I have my PET3 in two weeks time which will hopefully give me good news but I'm absolutely terrified that it will go the other way and mean I need to go through more treatment. It's a real rollercoaster journey!!! 

Hi Red36

I’m Martin and like you halfway through treatment. My program is six cycles (12 sessions one every two weeks) of ABVD chemo (just AVD actually after cycle two as they dropped the Bleomycin). 

I also suffer by hitting a wall around day 4/5 after treatment feeling that I just can’t do this anymore. My diagnosis was in September of Hodgkin Lymphoma stage 4 though I also still have non-Hodgkin Lymphoma that was diagnosed in March 2021 but now in remission. 

Even though I’m a Coaching Psychologist and therapist with over 20 years experience and have plenty of “tools” at my disposal I still suffer with my mental health. For me when it comes down to it I just try to grind my way through each day knowing that the feelings will eventually pass. I find trusted friends help me enormously just by being there sometimes more so than close family as it can often be hard to be totally honest with your closest loved ones about how you are feeling. 

It will pass my friend, as hard as it feels sometimes and it will be worth it. After PET scan two only last week I was told I am already in full metabolic remission from HL. But make no bones about it this chemo thing is tough and from hearing what others have gone through I sometimes think I’m getting off lightly at times, at other times however I literally feel like the chemo is killing me, which of course it isn’t. 

I find talking to my professional team really helps especially my lymphoma nurse and my chemo nurse on treatment day. 

Good luck with it going forward and this second half will soon be done also. All the best.