I lost my Dad 4 weeks ago to multiple myeloma. He had been suffering with a bad back since lifting some old carpet back in November 2021. It took until May before he was admitted to hospital for tests. It took a further 5 weeks for the blood cancer diagnosis. He died 3 weeks later. To this point in November he was a fit an active man at 81. His mobility reduced quickly. If only the Dr had thought it could be myeloma. Looking at the symptoms now he pretty much had them all. Don’t know why they didn’t consider it.
Wondering if anyone has advice how I can look after myself, and my young family but also balance that with my Mum who is now so alone.
A very warm welcome @Bluemackster and I am so sorry to hear that you lost your Dad 4 weeks ago, you must all be so sad and in shock.
Blood cancer charities have been campaigning with the symptoms of blood cancers for early diagnosis for a while now, the problem is that the symptoms are very generic of many conditions.
As for advice of how you, your Mum and young family can grieve and you can balance your lives. All I can say is that you will have an individual situation but by personal experience it will be different for each of you, but you are in the middle. I think an open environment where everyone can be honest and say how it is for them is important.
Some people find their faith helps. Some people find some emotional support helps either from Cruse Bereavement Care or another support or counselling service.
Might it be appropriate for your mother to stay with you for a limited time.
Have you got anybody that could help with childcare while so spend some time with your Mum, however I know it hard to ask for and receive help but it is worth it.
These thoughts still mean that you are pulled in all directions and it is so important that you have time for yourself as well, if you don’t look after yourself how can you be in a position to look after others.
Perhaps all commemorate the different anniversaries together however you want.
Some young people like to make memory boxes where they can put everything they want to in to remember their Grandfather.
It is natural to grieve and it will take a very long time and is a rollercoaster of individual thoughts and emotions, but most important all look after yourselves and be very kind to yourselves
The Blood Cancer UK support line is there for you if you need to talk and we are here for you.
I look forward to hearing more about you.
@Bluemackster I am so very sorry to hear that you recently lost your Dad- I can only imagine how you and your family must be feeling. Please do give us a call if you feel it might be helpful to talk things through with us or if we can help you find any specific support like counselling, practical support etc? The freephone number is 0808 2080 888.
There may be others who have been through similar experiences to you so I’m really glad you’ve joined this forum.
Hi @Bluemackster I’m so sorry for your news. I’ve got Multiple Myeloma too and it can be a very difficult disease to diagnose as most doctors might not ever see a case during their career. I know it took a while for me to get my diagnosis as I was just treated as a bad back case for a while and told I needed to do physio. I hope that you are able to find some comfort at this terrible time for you and your family and of course you will draw strength from each other and support. You have always got all of us here on the forum if you need us and of course Blood Cancer UK Support Team if you need a chat. Best of luck to you.
Thank you for replying all of you. That’s really thoughtful. I gave up on Facebook and social media some 8 years ago. I lost my daughter as a stillborn I’m 2014. From then I put the shutters down. I eventually opened up to close friends and family. I stayed with that circle of friends. I never returned to social media after that. I know I made the right choice.
I picked up my Dads ashes today. My Mum waited in the car. I see solace in him being home. Not sure my mum see’s it the same way. It’s tough decisions. Got a memorial stone sorted in nearby churchyard which will be lovely to visit for mum.
Hi @Bluemackster I have probably the most common leukaemia Chronic lymphocytic leukaemia (CLL) and when I was diagnosed in 2003 my GP medium sized surgery had only ever had one case of Chronic lymphocytic leukaemia (CLL) and I was helpfully told that they had died!!!
You say that you picked up your dad’s ashes and that you find solace in him being home whereas you are not so sure your mum feels the same and that demonstrates how we all grieve and feel differently about things and that’s OK.
The memorial stone in a nearby churchyard sounds really lovely and appropriate.
From my experience the important thing is to keep open communication with your mum and how you are both feeling and what you would like to do.
We and the Blood Cancer UK support line are there for you when you need us
Look after yourselves.
I’m sorry to hear about your dad
I can only imagine what you are feeling
There are no words that can take your pain away
Having somewhere to go with the memorial stone is a lovely idea and we all grieve differently no one size fits all. Even sitting together in silence is ok because sometimes we just don’t have the words to express how we feel
I know as a parent I try to protect my kids from seeing me upset but they are brilliant if I cry one makes a joke the other says nothing and both ways are ok to me
It’s also ok to not be ok
GP’s don’t seem to be at all clued up about Myeloma
I had never heard of it before I was diagnosed
If it wasn’t for my gallbladder infection I probably wouldn’t be here now as my myeloma was quite advanced
My myeloma was found by chance in 2017 aged 49
I thought I was menopausal legs ached my knee was hurting tried too make a GP app for the knee around the Christmas time no appoints till the new year 2016 previous to that 2014-15 I was constantly having a cough and on inhalers had the tests done and nothing showed up and stayed on them
I found I would fall asleep in my car after work
By Feb 2017 I was having pain in my left side and feeling sick all the time
Admitted to A&E with projectile vomiting and going to have a large gallstone blocking the entrance and causing an infection sent home after a couple of days on antibiotics ended up back in A&E the following weekend same thing and found to be very anaemic. Asked by consultant about cancer history in the family
Endoscopy and colonoscopy showed nothing all clear so my bloods were sent to haematology that took around 6 weeks from being in hospital where I was presenting with bony disease, kidneys on the verge of collapse and Protein and light chains sky high
I was diagnosed on the Wednesday had a bone marrow biopsy done 75% myeloma cells
Had a CT scan on the Tuesday and started chemo on the Friday
Sorry to hear about that.The problem with bad backs is there really common and I assume that most are muscular so a GP would probably think that.By a coincidence I’ve had a bad back recently and it is always at the back,no pun intended!,of my mind could the Non Hodgkin’s Lymphoma I have have infiltrated the internal organs and be causing it but the only way to find out from sure is a CT Scan or similar.I’m guessing that mine is muscular and you don’t like to trouble the doctors as you know that they are busy with other patients but as I have discovered more swollen lymph nodes as well I’ll ring them next week to tell them about the nodes and mention the back too.
So sorry to hear about your Dad. I know it seems strange but I have Multiple Myeloma and was lucky to be diagnosed within three months. I run a support group for people with a Myeloma and their family and friends. I hear lots of tales of how it took six months to diagnose their illness and back backs are often the start of it. It certainly was with me. I used to be a GP Practice Manager and now am a patient at that practice. In a group practice of 8000 patients I am the only one with Myeloma so doesn’t surprise me it took a while to diagnose your Dad. Do feel for you and your family at this difficult time. Joan
Thank you. I appreciate your words. All of you that have made the effort to respond. It’s very thoughtful. I try not to Google too much about illnesses in general. But one question to still have is whether multiple myeloma is rare? I think it’s like 18th on the chart of cancers. So I guess it is? People say Drs don’t necessarily meet patients with it so don’t spot it. If they do, in good time, then it’s treatable if not curable. So am I right to think it’s rare?
Hi @Bluemackster from @Joan reply and my experiences is that all blood cancers are rare and symptoms could be several conditions and therefore not the first thing that medical people think of and there are also at least 137 blood cancers.
Look after yourself
So sorry to hear of your loss. Im Here if you need to chat rant, rave or just chill out. Losing somi w isnt eady ive had my fare share iver padt whole just this year alone my neice died in feb 5 weeks to the dsy which was a thursdsy her dad died too of cancer so my eldest sister lost her youngest daughter and her husband within 5weeks of esch other both to the big C. Just take each minute as it comes and know you got threw thet minute and youll get through the next one even though its hurting… Im here if u need me so hollar at me…