This is my first post here and I’m in a bit of a state with my second treatment. I have Follicular Lymphoma and was originally treated with OCHOP and sailed through the treatment with lots of platitudes about you’ll die with this rather than because of this; this is the rolls royce; 80% of people have a 7 year + remission and in fairness I did do well on the treatment and after 6 months was in complete metabolic remission. Carried on with the maintenance with the same stories then at the end of treatment scan after 2 years was told that there was growth. Now the mood music was very different and I felt like not even buying a book in case I wouldnt get to the end of it. Then a scan is 3 months and volte face as the growth hadnt got any larger and guess what “we could still be having the same conversations in 2 years time”. Also is next scan OK then prob go onto every 6 months rather than 3. Next scan you’ve guessed it back the other way and need treatment now. So I’m on Rutiximaub and Bendamustine for up to 6 months with a view to a stem cell transplant after that.
Sorry for long start but my difficulty is that whilst the first treatment felt curative this just doesnt feel it and I’m struggling with this. I try to be the happy go lucky in the family - my way of coping but I’m finding it really tough. Can anyone help with how to feel better? How to feel positive?
I’m not normally like this but am really looking for a silver lining here for my massive black cloud.
It’s a journey rather than a ride I am viewing it as I am currently sat in a busy waiting room at my local hospital waiting to see the surgeon for stitches removal. In the last six weeks I have had two separate surgeries to my neck for lymphoma to remove neck nodes for biopsy.
I was diagnosed in 2018 with lymphoma and received rchop I too was told I was more likely to die with it etc etc
Not a great consolation to celebrate 5 years in year January and then in August to find these new lumps. I don’t yet know my treatment plan other than it is definitely chemo likely to be rchop but is all dependent on this biopsy result the first sample was insufficient.
I am with you on this journey we can do this:)
Always here if you need an ear although I now have no sensation in my right side of my face and ear as it’s numb post surgery ( strangest sensation ever) makes lying down at night very difficult!
There are many treatments lots of protocols for us nothing lost stay strong don’t give up hope.
Keep in touch let me know how you get on
It does sound like you have been through a lot and it is no wonder you feel negative at the moment. As @Jules mentions, the positives are that there are further effective treatment options but it is understandable that you would want the initial treatment to be the one to be the only one.
May I ask whether you have a Clinical Nurse Specialist that you can talk through your concerns with? This can be so beneficial to understand the options and the future treatments more. They could also suggest support for you locally too.
We would be very happy to speak to you over the phone around your treatment and of course the way you are feeling? Blood cancer information and support by phone and email | Blood Cancer UK
We also have some information here on Blood cancer: mind and emotions | Blood Cancer UK which does provide lots of tips on how to look after yourself during the treatment and blood cancer experience.
If we can help at all do call and please keep in touch.
Hi @Andy.K a great big welcome to our forum and @Jules and @GemmaBloodCancerUK have given you brilliant responses.
One of the great things that I have found about our forum is that it is the one place that I can be completely honest and say how it is to be me. I love family and friends dearly but in my experience they cannot understand my emotions and thoughts and want to make it better. You certainly do not have to put the happy go lucky mask on here.
As you say your first treatment felt curative and this doesn’t feel it. Perhaps it’s no wonder you are struggling perhaps your thoughts and emotions are all over the place and as you say you feel ‘in a bit of a state’
Never apologise for your posts I know feel honoured to really know the real you.
In my, non medical, personal experience you cannot force yourself to feel better or positive, they have to come naturally or I found counselling helped me.
Give yourself time and be ever so kind to yourself and please keep posting as I look forward to hearing more about you.
Thank you both for such lovely words and advice. I went for bloods today and hopefully I’ll pass the consultant meeting tomorrow for treatment on Thursday and Friday. Am feeling a little more secure now but am still thinking and worrying about what happens after but we’ll see. I’ll keep talking as I go through this.
Yes, @Andy.K please do keep talking your way through everything that is going on for you with us.
Perhaps in the famous words, that seem to be so true, just try and take it a day at a time (easier said than done with my washing machine mind!!!)
If you would like to actually talk to someone the Blood Cancer UK support line is there for you on 0808 2080 888.
Be kind to yourself and I look forward to hearing from you soon.