So having been to see ENT consultant following appearance of lumps 4 years into remission the wait begins again! Now have to wait 2 weeks for biopsy, CT scan and then a further 2 weeks for next appointment with ENT. The waiting is the worst thing imaginable because your brain can’t help but run through all the possibilities bad and worse. Having just got myself fit and happy in my own skin it feels like I have been hit with a hammer! It would have almost felt better to have been told the lymphoma was back. Any tips for getting through the waiting gratefully received.
oh @Penny1 I’m sorry to hear this. The waiting really is so difficult isn’t it. I think we all discover how good our imaginations are during the wait period. I wish I had an easy fix for you. In the past have you found keeping busy helps or do you prefer to be left alone? Do you have work or hobbies that you could throw yourself into? Or some good friends or family that you could task with project distraction? I write a blog and I often find getting my feelings out helps a little. I hope it doesn’t drag too much and the news at the end of the wait is good. Please keep us updated. xx
Thanks For your response @MrsGriff Lisa. I am working hard to keep busy and have recently joined a local social group which is involved in many events over the next few weeks so I am signing up for as much as possible in an effort to make the waiting time a positive time.
That sounds really positive. I hope the events are enjoyable and offer a good distraction. Don’t wear yourself out though!
Hi Penny and @MrsGriff, yes, the waiting is the worst and no good for me health wise as I take it all inside. I can find lots of diversions to try and stop my washing machine brain whizzing around with all my fears, thoughts(mostly unhelpful) and feelings, but it is that ‘darkest hour before dawn’ when I wake up and cannot get back to sleep that is the worst for me. Music and people help me most, a really good book or film can help although my washing machine brain can multi task and dominate. I get this horrible feeling in my stomach as well. I wonder if the medics realise how we are all affected by the waits. Don’t forget we are all here on this community forum to support you when you need us and please keep us posted.
I am totally with you @Penny1, I find waiting is one of the worst situations because my mind goes into overdrive at the best of times. What I try to do is continually remind myself that no matter what I think about, it will not change the outcome and it’ll be better for my health to focus on right now rather than worrying - your local social group sounds great. To calm my body, I concentrate on my breathing and try to focus on something relaxing like colouring in, puzzles or crafts - I’m sending best wishes and keep us updated x
Sorry to hear your bumps have returned @Penny1. From all I have read about lymphoma I concluded that stress seems to play a huge part in kicking it off in the first place so I set out to change myself and the way I thought about my lymphoma. I found out all I could about my type. I know it may well come back from time to time but is easily fixed. If its taken 4 years to get back to a visable bump then its a slow grower. There is no great rush, the doctors know that and diagnosis, treatment etc can run the normal route without incurring any risk. I just resigned myself to knowing I would have to play the game every so often and if you measure an indolent lymphoma against other types of cancers I actually stopped worrying about it. I now focus far more on living a calmer and more chilled out life, care a bit more about myself and slowed everything down. Rarely think about it, even got signed off check ups until I grow another lump. Mine was on my forehead and in my eye socket which was well scarey until I properly understood about what I had and how it works.
My advice is to try and accept that youre unwelcome friend has come to stay for a while, he will be a pain for a few months but he will be kicked out again and be glad the doctors are not panicking about you. Remember they see folk like us all the time - they know when to panic
With a of luck, you should be back to normal in two or three months. Just try to relax and go with the flow until then.
All the best K
Thanks to you all for the support. The reason the wait was so scary is that my consultant was not convinced it was the lymphoma and I think we both thought it was throat cancer which is really scary! However the biopsy results are in and it is the return of my unwanted companion and much as many people find it strange I came out of the appointment whooping with glee as it is the devil I know . Next is bone marrow biopsy and PET scan before we make a treatment plan but weirdly the pressure has lifted so although chemo is not pleasant at least I know what I’m dealing with now.
Hi Karen, I notice your unwelcome friend is a ‘he’ !!!
Hi Penny, yes, only we on this community forum would understand you coming out of your appointment whooping with glee !!! Please let us know how the bone marrow biopsy and PET scan go and then what your treatment plan is, please also share your fears, thoughts and feelings.
Sorry not very PC
Hi am starting chemo round 2 on Monday so waiting is finally over! Unfortunately it was found in my bone marrow but more positive it is the slower growing indolent NHL. A new drug this time Bendamustine so would love to hear from anyone who has had this one xx
Hi Penny, thanks for letting us know you are starting chemo round 2 on Monday. I have not had any info on Bendamustine. Look after yourself and be kind to yourself. Please let us know how things are going.
Thank you so much for sharing your experience. It sounds as though you have had to jump through some hurdles. You mentioned in December that you started your second round of chemo and that you also started a new drug. How have you been feeling since then?
Halfway through the chemo and not too bad so far had some muscle pain following each round but nothing I can’t cope with using good pain medication. The lumps started to disappear after the first round so looks hopeful. Due to have a scan after round 4 so watch this space lol
Hi Penny, yes, please let us all know the results of your scan when you have it.
How are you doing with your treatment at the moment @Penny1, I hope you’re doing okay? How have you found the bendamustine?
The Bendamustine was a walk in the park but unfortunately the PET scan still lighting up around the base of the tonsil so yesterday I had to have the tonsil removed to be tested. This is not so easy at my age and now I have yet another wait so here we go again
Welcome back to the forum penny, have just read you post describing your diagnosis, another blood cancer I’d never heard of. How does this effect your daily life ? I see you have had chemotherapy does that mean you are in remission. It’s good to see a representation of as many blood cancer patients stories as possible as I know people come to the site after diagnosis.i hope you are well all things considered.
I was in remission then after 4 years it returned so just finished second lot of chemo but still cells showing On PET scan so now awaiting histology results from the tonsil they took.