As you'll see in my Bio that I'm an estate manager on a country estate in rural Kent, a position that I have held for 17 years, The owner being a wealthy businessman. I have in the main got on with him well over the years, worked hard and often gone the extra mile to get work completed.
In 2023 I began to have a persistent cough, I'd also lost a lot of weight and felt tired a lot of the time, which I'd initially put down to the anxiety of losing my father, a man I loved dearly and spent many a happy day fishing or enjoying a pint, the previous year and still looking after my very elderly mother. All the usual tests were taken, and I was found to have raised white blood cell count and referred to a specialist in June 2024 at our local hospital confirmed that I have CLL and at that point I mentioned it to the boss who said that I worry too much! In September I was given the news that I have the complication of TP53 mutation which could mean the disease progresses more rapidly, I'm currently on "Watch & Wait". I discussed my prognosis with the boss and told him that both my GP and consultant said that perhaps I should consider either retirement, cutting down on work hours or if staying on at work to take things at a slower pace and take more rest breaks. He initially agreed and told me to take as many breaks as I needed. a week later he pulled me up for having a coffee in the estate office at 4pm on a particularly wet day when i spent the majority of it in the woodland clearing fallen trees.
The estate has been on the market for over a year and recently three members of staff has resigned and taken work elsewhere. The last one he was particularly upset about as he hadn't even completed his probation! I then got hauled in and told that I had to "up my game" to keep the place looking good for potential buyers...phew!
I can't say that I'm happy with this treatment, I've been a loyal employee for all those years but there seems to be a total lack of empathy... should I resign and get some part time work to help cover the bills and spend more time out doing what I love, fishing, birdwatching, walking or sit it out and do what I can here? Our mortgage is paid off, no loans or debts and we have a few quid in the bank but not enough to see us through retirement....My head is in a spin, any thoughts appreciated greatly....
All the best
Rob
Hi Rob Rob B and a very warm welcome to the Macmillan Community but sorry to hear about your CLL diagnosis.
I am Mike and I help out around our various Blood Cancer groups.
I don’t have Chronic lymphocytic leukaemia (CLL) but for some context I was diagnosed way back in 1999 at 43 with a rare (8 in a million) incurable but treatable type of Cutaneous T-Cell Non Hodgkin's Lymphoma……. eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell was then presenting so although my blood cancer ‘type’ is different I most definitely appreciate the challenges of this journey rather well.
Although CLL has the word Leukaemia in it, in Heamatology terms it actually comes under the umbrella of slow growing Low-grade non-Hodgkin lymphoma - yes very confusing I hear you say.
I was first diagnosed when our daughters were 14 and 18 and I continued to work for 12 years in a demanding teaching job but once my condition started to kick off I took retirement at 55….. and basically became a professional NHS patient fir a number of years See my story
You basically need to do what is right for you, your health and most certainly reducing your stress burden will help you a lot….. stress and blood cancers are not good friends.
The Equality Act 2010 protects you once you are diagnosed with cancer as it is seen as a disability so your employer must make suitable adjustments that help you continue to do your job but must not discriminate against you due to your CLL diagnosis and the challenges you have resulting form it.
The Macmillan Support Line is open between 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00…… this service provides practical information, benefits/financial/work guidance or just a listening ear.
Navigating a cancer journey can be such a stressful and challenging time but getting support from people who have walked or are walking the ‘exact same' journey can help a lot.
The Community is actually divided into dedicated Support Groups (Discussion Rooms) so can I recommend that you look to join and put up your own post in our dedicated……
…… support group where you will connect with a wide range of members navigating the exact same challenges.
To connect with a group click on the “Bold Italic Links” I have created above …… then once the group page opens click in the [Black - Click to Join - Banner] that appears at the bottom of the page and this will then confirm that you have joined the group.
When you are ready……. you can introduce yourself by putting up your very own post by clicking [+ Create new post] or [+] in the top right of the group page.
Always around to chat but I will also keep an eye open for you in the CLL group.
Good morning Bob Rob B living in the Highlands of Scotland I totally appreciate the passion you have for your job….. I have a few friends who are in the same-ish position as you and I have spent some time ‘on the land’ with them.
I have also been fortunate to get paid to do things I loved…… working with wood for many years producing bespoke joinery for some great new building but also for our now departed Elizabeth II having done work for Balmoral Castle….. then went into teaching the skills for 20 years and I loved this roll but my condition started to progress and things were changing in how the skills were being delivered…… it was all about bums on seats to get money and this came with pressure, and pressure brings stress……. the rest you have seen.
I talk with a number of folks with CLL on the community but also through Lymphoma Action.
Remember that CLL comes under the umbrella of low grade Non Hodgkin’s Lymphomas !!!!……. Lymphoma Action is the main UK Lymphoma Specific Charity who have lots of good reliable information, videos..... basically all things Lymphoma....... pre, during and post treatment.
They run various Support Platforms… I highly recommend these groups as this will widen your support base and there is nothing better than ‘talking’ with others who have walked or are walking the same journey.
Even although the TP53 gene mutation has changed the long-term outlook and that it is more likely to progress more quickly……. does not take away from the fact that this would still remain to be very treatable… yes some treatments can be dems ding but there is still life on the other side.
As much as my journey sounds and was demanding I have no hang ups about going through it….. they say that 1 in 2 will be affected with cancer in their life time…. and volunteering on here showed me that having a blood cancer is certainly not the end of the world….. as it is very treatable.
All the best with your discussions and I am Akways around to chat.
