Relapse worry

Hi Darquoise,

I am glad that you have found useful help here and I am happy you have now posted, although I am incredibly sad to read about everything you’ve been through and your current situation. I don’t have Hodgkin’s lymphoma, so I can’t help on the specific of that unfortunately, but something struck me in your post and so I felt compelled to reply. It was when you asked “how do I win this war against my will?” I have been in this place, as I am sure many people going through something like this have, and so I wanted to reach out and mention what helped me. The best thing that happened to me was when I finally managed to accept that I might lose the war. The notion of fighting was so deeply engrained in me but it eventually dawned on me that as much as i might want to win and desperately try to do so, sometimes there is nothing more that we can do. And that’s ok. I asked myself if it really mattered if I lost? And could I really force a win? What was really in my control and what really wasn’t? It took me a long time and I wouldn’t say it is a permanent state, but I definitely felt a calmness in the moment of acceptance. I also asked myself if it really helped me to see it as a war anyway? The notion of a war helped at certain critical points of stress, but it’s not particularly sustainable and should it really dictate with what I decide to do with my present? I started thinking in terms of paths. We all have our own unique ones to follow and as much as I might prefer a different path, this is mine to walk. So let’s just see where it goes.

I don’t know if this will help in any way Darquoise, and I’m really hoping that what you’re experiencing now is not sinister, but I just wanted to offer some things that helped me when the thoughts you mentioned in your post swirled around my brain. If you’re really struggling with it, please reach out for some professional help, I have used it in the past and I found it incredibly helpful to help me to allow my brain to process thoughts in more helpful ways.

Wishing you all the best

Greg

Hi  and a second welcome to our little corner and for Community, for context I had a rare type of Skin NHL so very different from your HL.

As always a great reply from Greg and I can only agree with him.

What I can bring to the table is that the post Allo (Donor) SCT recovery can for some be very hard work. My main challenges were more physical as I did have a lot of issues, with significant infections with a number of hospital stays....... and a few times dealing with "what if" aches and pains.... but like Greg I am coming up to 5 years post SCT and doing great.

I had 2 Allo SCTs, the first in June 2014 and by Christmas it had failed so went back in October 2025 for a final roll of the dice. I now have been in remission since Sep 2016... from a condition diagnosed back in 1999 as being Incurable but treatable but would never see remission. So from my point of view I have had an amazing result considering back in late 2013 I was told a few years on the clock.

I would highlight stress often being a big contributor to some of the issues you are facing and as Greg suggests it would be for you to talk with some people trained in this type of support.

I am at peace with where I am at, I totally understand that my cancer could come back and we will have no tools in the box and the 14 years treatments I had before my main treatment has put me well up the 'at risk' from skin cancer...... but I just can not control this but what I can do is live life to the full, enjoy my family and if and when I face these challenges I will face then full on with no fear.

COVID has made accessing support more complicated but can I highlight the Macmillan Support Line on 0808 808 00 00 where you can talk one on one - mostly open 8.00 to 8.00.

Also check this link to the Macmillan Buddies Telephone Service

You may want to check out this link to Maggie’s Centre as these folks are amazing. Yes the sites are closed at the moment but have people to talk with and do run online support groups.

We are also always around to listen and support as best as we can.

Hi ,

I can understand your wishes of not wanting treatment other than natural ones, but medicine has come a long way and for HL, a surprisingly long way in a short time for those who seem to have resistant or relapsing types on HL. However, getting a second opinion is one that I would advocate, and  I would suggest a couple of excellent UK specialists for your team to talk with, one being Professor John Radford at Manchester’s Christie Hospital, (he and his team have a huge wealth of information and knowledge) and Dr Chris Macnamara at London’s UCLH. He has to my knowledge run several trials. 

I would think about the possibility of Nivolumab also Pembrozilumab as drugs that have been successfully used in relapsed HL, sometimes in a combination with Brentuximab. Where in the country are you being treated? 

I had a conversation with a Macmillan nurse who said there was no reason to give up unless and until everything had been tried, and the saying ‘while there’s life, there’s hope’ and that helped me deal with our daughters HL which proved to be primary refractory, it just refused to respond to chemo or radiotherapy! But she’s doing ok now.....

hugs xxx

Hi Greg,

Thanks for your prompt reply 

I read it earlier and have been mulling it over. I would like to have a revelatory wake up call like you described and let go of the prospect of not winning... I have tried to take myself into that frame of mind in accepting my future fate whatever it may be and occasionally have waves of centeredness and perspective especially in the light of the pandemic and social and racial inequalities which are shaking the world. But while I still have life in me I am always racking my brains for solutions and truly believe we have a part to play in our own healing journey, I can’t just sit back and let the experts take full rein of my body without supporting with my complimentary approaches.

I expect if I was given a terminal diagnosis next week I would eventually come to terms with it and try to prolong life in the most peaceful graceful way, surrounded by nature and loved ones. 
however because I’ve been in this unknown hiatus for so long now there is this primal instinct for survival and finding a sense of control in the situation. If I just let go completely and put it into the hands of fate (and at the mercy of the doctors) then I just become this floating body without a soul. 

When I practice being present through different creative mediums and meditations I can feel this sense of release which I think is what your getting at and the thing that brings us back down from our thoughts which are so tied to our beliefs.

Also I didn’t choose this war, it chose me and I am having to participate involuntarily, against my will. That’s what I meant 

I’m trying to stay hopeful and optimistic still but it’s hard when the disease is so pervasive and resisting everything. 

Thanks again for your message.

Georgia 

Hi Georgia,

Your post is clearly thought through and makes a lot of sense to me. I think you’re completely right in that I am not saying to let go completely, it is absolutely important to seek control in those areas that are within our control. One thing I learned personally in all this is that I am actually a massive control freak myself! I like to think that everything is in my control and I feel very uncomfortable when I come across something I don’t seem to be able to control. That is what I sensed in your first post and that was the thrust behind my post about acceptance. I definitely had the mindset of “if i do this or do that, then I will get better.” That was a driving force behind the 18 months or so when I was in a constant bubble of fighting. For me, though, that mindset of continual fighting ultimately did me no good as no matter what I did and how hard I tried, I just was not getting better. That was when I starting breaking down emotionally. And it was at that point that I felt like I had to meet face to face with acceptance. That’s not to say that I would give up or let fate take its course, I still very much believe that we can influence our futures to a very great extent. It was more accepting to myself that I couldn’t 100% guarantee that I would get better and it ultimately wasn’t in my control to make it happen, as much as I might hope to. It wasn’t about giving in, I think it was more about being kinder to myself and not putting too much pressure on myself. I allowed myself to consider that it might all go wrong, but that ultimately that was ok because I was doing all I can.

It is great that you have creative outlets and practice meditations. Whilst those things never eradicate thoughts completely, they definitely help to stop things running away with themselves. Release is a good way of putting it. Just allowing things to go and to be. 
I am really hoping you turn a positive corner soon Georgia. I think you’re right that it’s impossible to be hopeful and optimistic all the time - all of this is one big nightmare we could definitely do without, but I hope my words help in some small way to get you to a better place in your mind, or at least to a place where you can pick yourself and go again.

All the best

Greg