What happens after treatment or being referred back to GP

@CaroleCW has inspired me to write this post in her post on Nurse Advisor Q&A- Your experience of Lymphoma - General chat - Blood Cancer UK Forum , so many thanks to her, she has raised issues on the thoughts and emotions side that resonate and came flooding back to me with me in a slightly different situation.
I will leave you to read her post.
After seeing my haematologist 6 monthly for 13 yrs he suddenly referred me back to my GP for monitoring with the proviso that if my tests or symptoms raised concerns I would be fast tracked back to my haematologist.
I came out of his office in complete shock, in a bubble with the world going on as normal around me.
I felt loss, anger, confusion, a fraud, bereft, uncared for, tossed away, a sort of loss of an identity (that I actually wished I did not have), how could I tell my husband who has his head in the sand about my Chronic lymphocytic leukaemia (CLL) anyway, how could I tell friends and how could I stay on this forum etc.
Logically I was the same person with Chronic lymphocytic leukaemia (CLL) and the same symptoms and limitations as I was when I went into his office, however my thoughts and emotions have been heightened since diagnosis.
Logically it was far more convenient to pop to my wonderful GP surgery for tests and monitoring, but logic went out the window and those other feelings were there for a long time and at times made me quite tearful.
I hope others will share their thoughts and feelings that have come up along their ‘cancer journeys’.


Hi Erica
I have had Chronic lymphocytic leukaemia (CLL) since January 2020 on WW and always been seen at hospital. I too on my last visit in January was referred back for my care under GP, who like yours are wonderful. To be referred back if anything changes. Since April this year I have had problems with aching feet then knees and then it’s gone to my hands. Finally got a diagnosis of inflammatory arthritis so been on steroids and methotrexate which with the inflammation has put my white blood count up to 26.7 it was 13. It worried me not going to hospital but now with this happening my head is more over the place with the arthritis again affecting my immune system. I’ve just had my booster for winter which is one good thing. Im sure if anything changes your GP will refer you back straightaway so try not to worry. I too have a husband that sticks his head in the sand if you don’t discuss it it’s not happening :joy::joy: take care and stay safe xx


Hello Carole - I know exactly how you feel and was in the same position in June when, thankfully, gratefully and overwhelmingly was discharged into the care of my G.P. Unfortunately for me, care of my G.P. is a ‘ha ha’ moment and I too felt fearful, shocked and worried for my future care. After speaking to my specialist Nurse at haematologist they reassured me that I could in fact still give them a call at any time to discuss concerns. This has settled me and whilst I intend to use my G.P. as a first point of call, this time around I will not waste any time in contacting my nurse if I feel that my G.P. and myself are not on the same wavelength, so to speak!
Next to bereavement cancer is one of the most devastating things to happen in anyone’s life and it’s not surprising that we feel all of these frightening and sometimes irrational emotions. If I am honest I can’t see that I will ever be able to put my blood diagnosis ‘to bed’, but rest assured that there are good people out there just waiting to help us through, including of course this forum. Look after yourself and go gently for a while.


Hi @Shelz I have been thinking about you and wondered how you are doing now?
Look after yourself

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I get that Erica

For the first year of my treatment i was getting blood tests done every two weeks and the same lovely lady rang me from Haematology with my results…she was the tinker lady…she tinkered with little things and finally found the right levels of medication for my ET

Then one day it was another lady who called…not the lovely Tinker lady.

An onslought of different emotions for a while but the new lady …well the old lady now because i have had her call for a year is just the same as the tinker lady!:rofl:

Change can throw you for sure.

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Hi Erica
Im doing okay my lymphocyte count is down to 12.5 and WCC to 15 so looking better. My arthritis is still a problem my hands are not very good now referred to occupational therapy so hoping they can sort me out. Just had sinusitis and GP given me 2 nasal sprays and antibiotics they are very good and making sure I’m okay.
Hope you are keeping well.