All started with pain to right, then left flank, fatigue and a cough. Originally assumed some sort of cold/flu bug but when the pain didn’t improve took a trip to the GP and he threw the book at it in terms of tests. Blood works (came back anaemic), X-ray etc. X-ray thew up a significant mass across the chest so initially referred to Respiratory (fearing lung cancer I guess), who organised a CT, then a PET and lung function test. They came back showing suspected lymphoma and was referred to Haematology quickly. Day after was called by Haematology and admitted as an in patient for further tests, same day, that was Tuesday. Had a bone marrow biopsy and have an ultrasound guided biopsy planned next Tuesday, earliest appt apparently.
In the meantime been asked to remain as an in patient. Obvs super worried and scared but would say numb more than anything and just doing what I am told for now. Would love to make a few connections here with anyone who has a similar experience? Best.
huttonshonley just wanted to say good morning and send you warm wishes. I do not have lymphoma and am sure someone will reply soon who has. Good luck with your biopsy next Tuesday. Be kind to yourself and remember there is no right or wrong way to feel. I am not technical so do not know how to put up links but if you look around the blood cancer UK site there will be information that may help. It sounds like you are being well looked after. Best wishes Liz59
Hi @huttonshonley. Welcome to our forum. I’m so glad that you found us. It is a great place to connect with others that are going through or have been through similar experiences, or simply to share your journey and how you are feeling. I was diagnosed with Chronic myeloid leukaemia almost 13 years ago, and can relate to the feelings of worry, fear and numbness. It is an incredibly unsettling time as you go through the process of testing, but it sounds like you are in good hands and being looked after. Good luck with your upcoming tests. Let us know how you get on and do keep posting on here. Take care
Hi @huttonshonley a great big welcome, I am really glad that you have found us.
Well I was worn out just reading your post, I cannot imagine how you are feeling.
It sounds as if you are having lots of tests to rule things in or out.
I certainly relate to your worry and scaredness, so much going on but also a lot of waiting and not knowing.
Yes, all you can do is do as you are told.
The Blood Cancer UK support line is there if you need it on 0808 2080 888.
We are also there for you to say how it really feels to be you.
Be ever so kind to yourself and really look after yourself and please do keep posting
Hello @huttonshonley, so sorry you suddenly found yourself on this rollercoaster. It sounds like you are being very well treated and accepting the offer of an inpatient bed could well speed up the start of your treatment. It did for me - approaching a year ago I thought I had a post covid infection but couldn’t get rid of it and after a month a&e admitted me with sepsis. The first 2 weeks as an inpatient were all about diagnosis. I don’t recall being offered a choice of staying in or not but wasn’t well enough to be anywhere else. So many scans of different types and blood tests but within that time I was diagnosed with Non-Hodgkin lymphoma (NHL) and my first R-CHOP chemo was arranged as an inpatient.
Very best wishes to you and let us know how you get on.
Hi @JaneyH welcome to our forum gosh you go into hospital with one thing and come out with a completely new diagnosis and treatment, yes, a rollercoaster.
How are you doing now and what are you getting up to?
Really look after yourself
Thanks Erica, I think I finished up my six cycles of three weekly chemo and a ‘full remission’ on a wave of euphoria which carried me through for quite a few months. Now I’m realising just how weak and weary I really am and instead of trying to go full pelt to ‘back to normal’ I’m giving myself permission to have gaps between activities, not to take part in things if I’m low on energy. I’ve just begun a ‘Healthy You’ strength and balance class which I hope will give me more confidence. (I lost the ability to walk while in hospital and am decidedly wobbly now). Eating is hard as taste buds haven’t come back fully. I’m logging my intake but on a particularly bad day my 5aday score can be zero.
Yes, @JaneyH slow and steady wins the race, I am an ‘inpatient patient’
Don’t forget you and your body have been through a lot, be very kind to yourself.
