Happy New Year everyone!
I hope everyone had the best Christmas and NY that they could possibly have!
I've started mine with yet another Infection, bloods are all low. I have been on preventive antibiotics since the end if September and this is my second infection while taking them.
Just had my check up and had a CT scan for the sinuses and an ultrasound for the spleen which has also enlarged since November 24 by 2cm. Just waiting to hear to see what's happening with the sinuses. Immune system is so low at 6.5 but has to be lower than 4 to get the replacement treatment. So it has been Infection after infection since August 24.
I guess I just wanted to ask how any of you guys cope with constant infections and knowing you have an immune system that is never going to really recover because of the blood cancer and side affects of the chemo.
Feeling so fed up, I have fully accepted that the cancer is something I have to live with but also having the immune system problems I'm just struggling to find a way through.
Sorry for the rant
Debbie x
Hi Debbie and let’s look for 2026 to be a good one.
Post treatment life is the gift that keeps on giving….. I am over 10 years out from my last treatments and infections are part of life.
5 times back in hospital (38 days) with Chest Infections, Lung Fungal Infections, the RSV Virus, Pneumonia and Neutropenic Sepsis x2
At the start of November last year I had one virus after another….. they cleared up just in time for my 70th birthday on the 21st then kicked off again a few army’s later, ended up in A&E after collapsing in the shower… CT to check my head as I am in blood thinners but all was ok…… but a chest X-ray showed I had Pneumonia……. so the strong antibiotics stripped the lining of my stomach so was not eating…… but thankfully everything cleared up on Christmas Eve.
My main mindset to get through with putting up with these temporary bumps in the road is compared to my treatment not working and me not being around I am happy to navigate the infections.
‘Speaking’ with others can help a lot.
If you are in the UK you may want to check out Lymphoma Action.
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……
Their Closed FB group alone has over 6000 members and unfortunately you would most likely bump into me on there also ;)
They also run the very good Lymphoma Focused Live your Life Course that is a peer-led self-management course.
The LA helpline is open every week day from 10 till 3 on 0808 808 5555. This is a safe place to talk things through and get support.
