Hi Alice, I know I am a very lucky girl to still be on watch and wait. I agree with avoiding bugs and germs and on public transport I always face the window and stop breathing for a while if someone sneezes or coughs. I like your travelling ‘bug’ though and we await hearing about your trip to Portugal.
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I have a PET scan in three weeks and already the stress is kicking in. At least I’m aware of what I’m doing - reading back previous medical reports, google search in overdrive; it’s definitely not healthy and I’m finding nothing new, no miraculous new information etc so what’s the point! It’s time consuming and makes me feel worse but yet those eyes keep reading and fingers typing. Going to try my hardest to ease up on it as from now. Will keep busy, try to think rationally and think positive - I’ll let you know how I’m going with that 
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Thinking of everybody else who had check ups coming up x
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Dear Nichola, thank you so much for sharing your thoughts. I am glad I started this thread as it has definitely opened up a conversation about a problem we all share and as the saying goes " a problem shared Is a problem halved "
Best wishes
Alfie
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Hi Nichola, it sounds as if you will wear google search out, at least, as you say, you know it is not good for you, I am sure it would not be good for me either, my mind is bad enough. Perhaps this site helps me to realise what I am doing and then I have a choice. I have so much to do and going on (mostly free) that I try and keep my mind diverted. I find the nights are the worst for me and my mind. Please keep posting how you are doing and feeling over the next 3 weeks and beyond, we are here to support you.
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Thanks Erica - helps just to share xxx
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It helps so much to share x
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Thank you all so so much for sharing your experiences, I can imagine it is really validating for those perhaps struggling with these feelings to read that others find it difficult too, and you’ve shared some very useful tips and advice. Does the length of time between appointments add worry, or relieve it as you know its months and months away? What advice would you give someone newly diagnosed and on watch & wait, who is anxious at the thought of months ahead of appoinments and checkups?
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Hi Nichola @Nichola75. Have you had your PET scan and results yet? The worst part of the PET scan is when you leave whoever may have come with you to go into a room by yourself while you have the radioactive injection and wait for it to work, and you have nothing to entertain apart from listening to music for an hour, then trying to stay away from anybody who may be pregnant and not cuddling little ones for an hour or two after the scan. I hope you received the best scenario x
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I completely forgot to update on here! Yes PET scan done and yes, horrible to be on your own. I took lots of magazines to try and keep busy. The results show the same activity in abdomen but nothing has got any bigger so back to 4 monthly check ups. Still getting my head around the whole active monitoring - have signed up for the national lymphoma conference this year so hoping to pick up some tips. Thanks so much for remembering xxx
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So pleased that things appear to be stable @ Nichola75. I wasn’t allowed to take in a book. Perhaps things are more relaxed now. I am sure from your previous posts that you will carry on getting the most out of life, and try to stay away from Dr Google 
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Thank you for this Louise, I didn’t realise there was a period where you were on your own, I’m sure it’ll be so helpful for others preparing for a PET scan to know what to expect.
@Nichola75 Thank you for coming back and sharing your results, very pleased to hear things remain stable! Hope you’re doing okay today. Attending the Lymphoma Action conference will hopefully be really validating and an opportunity to meet others who are in the same boat and get it.
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Is there anything you’ve found is helpful around managing stress and worry around appointments? Or, perhaps, anything that wasn’t helpful for others to avoid? Is it easier to go to appointments alone, or to take someone with you?
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Hi Dawn, my husband is a brilliant note taker at appointments, but not so good at emotional support or waiting in the waiting room. To be really honest I often like to just go on my own to appointments as I can just read my kindle in the waiting room, then concentrate on myself and the questions I have written down to ask. This I find helps me manage my stress at appointments !! However as for managing my worry and stress around appointments I think that is different for me, somehow over the years it is not as acute as it was, I think my emotions were on high alert for a very long while. I do get a yukky feeling in my stomach which comes whizzing back and the fears, what if’s, thoughts and feelings are popping into my mind. On the day I try and make sure that I have an extra long soak in a bubbly bath, eat before I leave the house, give myself plenty of time, play music on my Walkman and have my kindle with me. If it is going to be a long day I make sure I have a snack with me too.
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Hello! The conference was ok. Some really useful presentations and I think my husband found it really useful. The sessions that separated carers and patients needed to be a little longer and I have given that feedback. I think for me personally it highlighted that lymphoma (or the people that attended) were a lot older that me and because it is an illness with an average diagnosis age of 65 I do understand that. Im not belittling any of the conversations, advice and lovely people I
met but just feel there is a gap in supporting younger people with follicular lymphoma with regards to managing everyday life. Does that make sense?
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Dear Nichola, I’m glad you found the conference useful. I understand what you said about the age gap. There is a difference between managing blood cancer whilst working and dealing with it’s challenges during retirement. In my disease the median age of onset is 65 I am 55and my husband is 57. This seems to be a issue with most blood cancers, whoever is the minority is at a disadvantage to some degree.
Best wishes
Alfie.
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It is very different isn’t it. I loved lots of the suggestions to support emotional
And mental well-being but working full time and having two children (aged 10 and 13) makes putting all of the suggestions into practice very difficult. However, we have to try don’t we x
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Thanks Nichola, yes, I was at the conference too and I am one of the 69 yr olds and I agree with everything you say. I ate my way through the day. I often find it difficult in such big groups of people, but on the other side I rather like to be able to just be with my own thoughts. I thought the speakers were interesting although I am no good with medical slides and statistics and I also really enjoyed the breaking down into smaller groups. Yes, younger people certainly need a bigger voice and support for their needs. I cannot imagine what it is like have a blood cancer and to work full time with a family. Thanks for raising this issue and please keep sharing what it is like to be you.
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@Nichola75 @Alfie @Erica I am pleased that Nichola and Erica found the conference useful. I think each of us has different challenges whatever our differences, and we all have to find our own way of dealing with them. I have never been able to work since my diagnosis, although my employers kept my job open until I felt able to return. Unfortunately complications in treatment meant I had to face up to not being able to return and having to write a letter of resignation. At the same time my last fledgling left home. I had lost two jobs at once, and felt rudderless. My Bloodwise family were a great help in making me feel useful again. Now simple things are a joy, like seeing the grandchildren I never thought I would, and going to see our youngest next week in his first property (Bank of Mum and Dad have their uses) Take care all of you xxx
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