Hi. Can i ask the people who are on watch and wait how often between your consultant appointments? I was every 3mths,but ive decided to do every 4mths because i felt i was always there,12 weeks passes so quickly and your back again. I have mcl stage 4.
Hi New York, I have CLL and I have been on watch and wait for 15 years. I have always been on quarterly blood tests until recently when the consultant changed me to six monthly, unless my symptoms exacerbated. I was also discharged back to my GP with the proviso that if my symptoms or blood tests showed cause for concern I would be fast tracked back to the consultant. I had mixed emotions when I was discharged back to my GP, but I have always been happy with the timings of my blood tests. I always get anxious before any medical appointments or blood tests. The GP surgeries blood tests are more comprehensive than the consultants anyway. I also chart my blood tests and watch for anomalies anyway. I believe in listening to my medical team and going with what you feel comfortable with, good idea for a post please keep posting how you are
Hi, I’m every four months at the moment.
Erica,while i say its better for me,every 4mths,i dont thithink i could do 6mths. Last time i had pet scan and there’s another mass behind the left groin ones,i think sometimes you can have too much of one thing,i needed brain space to get on with my life till chemo and sct. May i ask what stage you are and how long you’ve been on w and w. 3yrs end of February for me,stage 4. Kind regards Becky
Hi Becky, of course you can ask me anything. I was diagnosed with CLL in Dec 2003 at stage 1. I have been a very lucky girl and I have kept fairly stable and been on watch and wait ever since. However I have had several other health challenges since including an irregular heart beat, osteoporosis, continuing shingles, infections etc. Take care and keep posting.
Hi I’m Ann. I have had CLL for 2 years and 3 months. I am on watch and wait and have not required any treatment. Due to the Corona Virus I am now shielding for 12 weeks as advised on the NHS and government websites. Can I just ask if anyone has received their letter from the NHS, GP, to inform them that they should be sheilding at this time. My manager has been asking if I have received a letter. I live in Scotland and know we are behind England on this matter. Just want to clarify if I am meant to be shielding or should I be going to work. Has anyone at the same stage as me received a letter? Thank you for any help received on this matter.
Hi Ann, welcome back in England some of us have received a NHS letter and others a GP letter or both or none, very confusing for very anxious people, families, friends, carers, work and access to priority food deliveries etc. I have had CLL since 2003 and been lucky enough to be on watch and wait ever since. I am 70yrs old with other non life threatening conditions, but I have received the NHS letter. Many others have not received letters. As you say, and I have also heard, that Scotland is behind with letters going out. Our Blood Cancer UK website does give up to date guidance. I am very glad to hear you are shielding, as I am. Your safety is so important.
Hi, my dad has CLL and didn’t receive any letter or text. Seems a little odd, but he’s been self isolating anyway. He’s 76 so didn’t have to worry about work and I’m just down the road so can help with shopping, prescriptions etc so it makes isolation easier for him. I imagine it’s much harder for others x
You say you imagine it’s much harder for others but you have a lot on your plate.xxxxx
Hi @Aabeaton how are you doing? Did you receive a letter or did you manage to speak to your healthcare team about your questions around this?
I do hope you’ve been doing OK and that your workplace have been understanding?
Take care, Alice
Hi Alice, I’m doing ok, apart from feeling a bit isolated at times. I received my letter from the NHS yesterday. I hope you are you coping with all the changes to our lives. My work have been really good with me, I am now working from home. Take care and stay safe.
God Bless, Ann
Great news, Ann, that you have received your NHS letter and that your work have been really good and letting you work from home. If you have time it might be useful to hear the differences that has made for you and how that has changed how you feel. Stay safe.
Glad you’re doing ok Ann. It’s totally understandable that you’re feeling isolated at times. Are you able to keep in touch with friends/family virtually?
So good to hear that your work have been supportive and that you’re able to work from home!
Take care Ann and remember we are only ever a phone call or email away
Thank’s Alice, yes my family all stay close by and we are in regular contact. I also have a close circle of friends and we are in regular contact.
Take care and stay safe. X
I think it really helps to have support around, they are priceless.