My Mum (72) was admitted to hospital in Bangor before Christmas in a confused state. She is normally fit and well but scans four weeks ago found lesions on her Lungs, Liver and Kidneys. On admission for the confusion, Hypercalcemia was diagnosed and then on Christmas Eve we got a diagnosis of Diffuse Type B Large Cell Malignancy following biopsy. She was discharged from Bangor Hospital on Christmas Eve to my elder brother who lives on The Wirral. Three days later she had to be admitted to Arrowepark Hospital as the Hypercalcemia had returned. We’re glad as the care seems a lot better. She had no discharge plan from Bangor! All information from Bangor is with Arrowepark but we have no knowledge of Bangor’s proposed treatment plan and Arrowepark are checking Bangor’s findings but basically trying to get the Hypercalcemia under control and Mum fit to undertake any proposed treatment for the NHL although we haven’t reached that stage yet with Arrowepark.
My question is this - am I correct to assume the Hypercalcemia is being caused by the NHL?
I live in Scotland, my Aunt lives in Manchester and my brother is closest on The Wirral. We are trying to sort out a Power of Attorney but Mum is not mentally competent at the moment so will need the hospital to act as Certificate Providers for that - any advice on that would be welcome
but my thoughts are on my first question and a reasonable expectation of next steps would be helpful. I have heard that Mums situation is indicative of wide spread and thus would mean palliative care? I’d rather be hoping for the best but planning for the worst. The speed of deterioration has been shocking from a normally fit and healthy lady to someone saying she was tired a couple of months ago and falling asleep during the day to suddenly becoming confused and admitted to hospital to then getting a cancer diagnosis.
my final question and probably a really hard one but should we be thinking that Mum doesn’t have long and we are talking weeks rather than months?
I would normally be happy to wait for the process to run its course and get to a prognosis conversation but the combination of Xmas, shocking care at Bangor, Geography and now New Year has made the last two weeks horrible. Just a sense of what we are looking at would be very helpful. I work in the NHS so I’m not going to come back with a “but you said” statement. Please help!
Thanks
Mark
Hi Mark and welcome to this corner of the Community but sorry to hear about your mum.
The experiences you are all facing can happen a lot as folks just like your mum could have been living with the NHL for some time. I obviously am no expert but the fact the this is a cancer of the blood the Hypercalcemia may well be caused by this but a question for her medical professionals I think.
When cancer comes into the family the worst is always assumed...... but unlike many sold tumour cancers, blood cancer is rather different.
Blood cancer can go where the blood flows so yes can be everywhere in the body but unlike Stage 4 in solid tumour cancers being most likely a death sentence..... it’s not the same in blood cancers. Indeed I was stage 4 and am still around doing well 5 years out from treatment.... (hit my name to see my journey)
Each lymphoma journey is different but you do need to understand that on the whole NHLs like DLBCL is very treatable and we have had people come through this site being diagnosed at 80+ years old and are successfully treated.
DLBCL is classed as High Grade so will grow quickly so does need some strong treatment, the chemotherapy used has been used for many years and are very effective.
You do need to get some clear information from her medical team as they are the ones who will set out what this journey looks like,
I am tentatively bringing some hope to your situation as until you are told different your mum can be treated.
Power of Attorney at any age should be put in place so you do need to talk with the ‘system’ to get this done. My mum died two months back at 92 and she refused point blank to allow us to get PoA in place but as she died suddenly it was not needed.
We do have a dedicated Diffuse large B-cell lymphoma group so you may want to join this as well especially during the times of treatment.
It’s always good to talk and the Macmillan Support Services provides lots of information, support, financial guidance or just a listing ear.
Most services are open 8am to 8pm, 7 days a week and it's free to call on 0808 808 00 00 have a look by Clicking here to see what is available and we also have our Ask an Expert section, but do allow two working days for replies from our expert team.
Lets keep talking and see if we can help you and the family navigate this.
Me again
The link below will take you to some clear information on the Lymphoma Action Site.
https://lymphoma-action.org.uk/types-lymphoma-non-hodgkin-lymphoma/diffuse-large-b-cell-lymphoma
It’s is very important that you don’t do random Dr Google searches as this would be unhelpful and take you down some dark rabbit trails.
Do come back with your questions at any time.
Yes let’s look for some clear answers. I will put up a link about questions you should be asking her clinical team.
Obviously from my community name I am up in Inverness. My 92 year old mum who lived in Aberdeenshire died in mid November...... We did get down to Aberdeen with 10 mins to spare but due to the very high COVID issues in the Shire and me being COVID Clinically Vulnerable the hospital team and my family did not let me into the hospital, hard at the time but totally the correct decision.
COVID has made what is a challenging journey that more difficult to navigate.
Edit: Questions to ask a clinical team
lymphoma-action.org.uk/.../LYMweb0014QsMedTeam2020v4_PDF_information_sheet.docx.pdf
