Hello. I am new to this Community, and was diagnosed with CLL two years ago after many chest infections and coughs. I am on Watch and Wait. I was very positive at the beginning and have not thought much about my diagnosis, as having been told I could go many years before needing treatment, and I have kept pretty well. My main symptom I have noticed is the fatigue which can suddenly hit you. After two years I have found I am struggling with my emotional health. Two elderly parents who need more of my support, and a Husband who has medical problems too, I feel I am being stretched beyond what I feel able to cope with, and feel very overwhelmed. I seem to be giving out support, but not receiving emotional support. My question is can emotional stress have an impact on my health and how CLL could progress. Thankyou
Hi again Rusticsoul and well done navigating across to this group.
Living with conditions like Chronic lymphocytic leukaemia (CLL) and indeed my CTCL (Cutaneous T-Cell Non Hodgkin's Lymphoma) can be both a mystery and a challenge at the same time. The mind says "I have cancer treat me"....... but the experts say "you are not at the point where treatment is required"....... all very confusing.
CLL and SLL are slow-growing (low-grade or ‘indolent’) cancers. Many doctors group them together as a type of non-Hodgkin lymphoma. They usually behave like a long-term (chronic) condition that needs treatment from time-to-time to keep it under control.
I don't like the term Watch and Wait, I prefer the more positive term Active Monitoring as I find the thought that I am actively being looked after and assessed........ I was basically on Active Monitoring for 14 years before I had to have big gun treatments..... although I was having regular skin treatments...... my condition is rather rare and complicated (hit my community name for my story).
My question is can emotional stress have an impact on my health and how CLL could progress
The simple answer to your question is yes.
Reading through what you are dealing with, supporting your elderly parents, supporting your husband with and living 'with' your CLL I am not surprised that you are stressed and experiencing periods of fatigue.
The baseline is your bodies immune system is continually fighting your CLL 24/7..... unknowingly this does reduce your energy levels but on the whole you can push through this but add the pressures of supporting you parents. and your husband....... your energy reserves are running on low...... you do need to watch out for this as you will be diverting your immune system from keeping your CLL under wraps.
I strongly suggest that you talk this all through with your clinical team as they need to understand the challenges you are having and they can review your health in light of this.
From my experience with my elderly mum trying to make life simpler for myself as to how much we had to do for her against her total independent spirit (stubbornness) and total refusal of us getting in any help was very difficult to manage especially over my years of my main treatments (Mum passed away Nov 2020).
As to support, this group is always around so do use it to vent or just to chat. you
I always highlight the Lymphoma Action website. The Bold link above are taken for the site. Lymphoma Action is a small but very active UK Lymphoma Specific Charity who have lots of good reliable information, videos and run regular Lymphoma Online Support Groups for patients...... I highly recommend these groups as there is nothing better than 'talking' with others who have walked the journey.
They also have a great Lymphoma Action Buddy Service where people can be linked up with someone who has walked the same treatment journey. They also have a Lymphoma helpline on 0808 808 5555 where Sharon or Nic will be on hand to give you some support - open every week day from 10 till 3.
As always do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing.
Always around to chat and help as best as I can.
The journey ebbs and flows over the years...... I was actually discharged from my Haematology department back in June 2018 with the words " Go live your life.......you know where to find us"
I am still navigating some post treatment leftover conditions but happy to be around and living a great life ((hugs))
We live 10 mins drive from the shores of Loch Ness....... so it was and still is our 'go to' head space place.
Many a day we have stood at the Loch edge and skimmed stones across the water...... some sunk very quickly but others went on dancing across the water....... I always think that this is just impossible..... but there is a picture there with regards to the cancer journey, especially with the type of cancer we both have.
We just have to deal with the sinking times (the stuff of life and the stuff surrounding our cancer) but we must aim to celebrate the dancing times....... often these times are few and far between but we must look for the gold and keep focused on living life.
As for my mum. She was 92 when she passed away and she achieved her wish of living relatively independent. It was all very sudden but she had no pain. We live 2 1/2 drive away from her so by the time we got the call that she was taken into Aberdeen and do the drive it was the matter of minutes........ unfortunately this was bang in the middle of covid times and we were meet at the hospital doors by a doctor from the ward she was in. He said that it was not a safe place for someone like me who was on the CEV list and who was still shielding........ but my wife was able to get kitted up and made it in just in time to be with her.
My mum expressly wanted a private and had an exact list of who she wanted there........ the covid limitations at the time was just sufficient for the 15 names she had on her list....... so she definitely got her wishes.
It is lovely to hear your positive thoughts
The more you talk on here the more you will see that I am a total glass half full person.......sometimes annoyingly ((hugs))
