Father diagnosis - conflicted

Morning Alex, 

I remember once being in a yoga class. The young woman next to me felt she had put her life on hold, to care for her mother who was terminally ill. She felt her life was in limbo.,

I never wanted any of my children to feel like that I have always wanted them to live their best life. I didn’t want their lives to be affected by my diagnosis My youngest daughter has gone travelling a couple of times with my blessing. She has spent a year in Australia and almost a year exploring the East. It was wonderful to see her enjoying all the wonderful experiences. 

My son was working as an engineer in London. He made the decision to come back home, without discussing it with us The choice was totally his. He met the love of his life here and they now have three beautiful children, my adored grandchildren. 

I just want to see my children happy, living fulfilling, purposeful lives. I am sure your dad will feel the same. You have nothing feel guilty about. You are not being selfish. Just make sure you have no regrets, make decisions that sit easy with you. 

Hi Alex,

You say in your post that you feel tremendously guilty about being away and considering and going back to the UK "to make up for all the lost time", versus mourning for the life that you currently have.

Soon after my diagnosis, I called the family together and asked them to live the lives that they wanted to live, getting on with work, studies, holidays etc exactly as they would do otherwise. They have done that. At this moment, half of my family are in Asia on holiday and one of them may just relocate there!

You (and your father of course) have received the shocking news of a cancer diagnosis. I suggest that this is not the time for a knee jerk emotional reaction, such as rushing back to the UK.

A few things to consider:

1. The medical bit. You don't mention anything about your father's diagnosis (please feel free to give us more info if you have it yet). Myeloma is a cancer, and it is incurable. However, it is not a death sentence these days. I was diagnosed in 2022, went to the gym this morning, and am now heading back from my 3rd holiday so far this year!

2. The most common treatment goes on for around 6 months. The standard combination Is 4 chemo drugs, Daratumumab, Velcade, Thalidomide and Dexamethazone. He may or may not have a stem cell transplant (the rule of thumb is that this is less likely if he is over 70 and/or has other health issues).

How he responds to treatment - in terms of side effects - is unknowable just yet. They vary enormously. Therefore there is simply no way of knowing yet how much help he may need.

3. Which leads on to the next item. Are there friends or other family who can help him?

4. Then there is your situation. Uprooting yourself and coming back to the UK is a big step. How feasible is it in terms of:

- Any family that you have with you?

- Employment?

- Anything else, such as a home?

Hi alex030376  and welcome to this little corner of the community.

I am Mike and I help out around our various blood cancer groups….

I think that your feelings are definitely justified but don’t put yourself down in any way…. the fact that you are posting in here says a lot about your love for your father……... but you are looking at this from on one side of the cancer table.

I was diagnosed in 1999 age 43 with a rare (8 in a million) hard to treat incurable types of slow growing Low-Grade T-Cell Non Hodgkin’s Lymphoma (NHL) when our daughters were 14 and 18…… 14 years later in Oct  2013 a second very rare (4 in a million) more aggressive fast growing High-Grade NHL came along taking me to stage 4…….

Over these 14 intervening years we continually encouraged our daughters to follow their dreams….. this was based on the foundation that back in 1999 the then median survival for my first type of Lymphoma was 3-5 years….. we insisted that they must not let the ‘what if’s?……’ hold them back - we wanted to see them succeed and flourish.

The 3-5 years timescale was blown out of the water as the developments in treatments were out running my cancer….. I did have to have some intensive treatment between Oct 2013 to Oct 2015 (750 hrs chemo, 45 radiotherapy zaps and 2 Allograft (donor) Stem Cell Transplants……

Yes this 2 year period was challenging especially as they both lived considerable distances away…… but technology ment that they were at my bed side 24/7…..

All these 26+ years later went on to see our daughters graduate, get married, set up very successful businesses and provide us with 4 beautiful granddaughters….. I turned 70 back in Nov last year and I am coming up to 10 years 8 months since my last treatment.

What does your father feel?…… what would he deep down actually want?

Hello Mike,

This is a truly remarkable story. You give me hope. My father would be happy to have me back but I know deep down he would be disappointed to see me leave a life that I love back. This is all very new to me. I am very scared. He starts chemotherapy tomorrow and I am so scared. But your story helped me. Thank you. 

Sending best wishes from the bottom of my heart. 

Alex

Hi Alex alex030376  as my chemo was rather different due to me having 2 types of Lymphoma so my treatment experience is most likely different but I am sure that the others can help you out with their first hand experiences.

My great CNS initial words were “……Mike we can line up 50 people on the same treatment for the same Lymphoma (in my case) and we will get 50 different stories...... as the side effects can be ever so different.

You can read all the information you are given and then you can start to catastrophise that every side effect that you have read about will happen……. but the reality is often very different.

I had 6 cycles that had me in hospital 6 nights/5 days on my 2 IV pumps 24/7 for over 120hrs each treatment........ and I actually had no real issues.

Hi Mike,

Thank you so much for this. Any advice on how to approach it from my own side? I just don't want him to think I only see his diagnosis instead of him. Like every time I ask how he is, I care for him as my dad, not for his diagnosis and I don't know if he understands that. I don't want to feel like everything we talk about now is only about his diagnosis. Any ways to make him feel loved and understood, over what he is diagnosed with? I don't know if my question makes sense.

Thank you,

Alex

Thank you so much for this message. I am quite overwhelmed at the moment. I feel guilty for wanting what's best for me when my own father, the person who let me dream about all those things I have now, might need me there. 

Hi Alex,

If I can intervene on this, you are saying that you don't want him to think you only see his diagnosis instead of him.

From his point of view, he has probably had one hell of a shock in getting that diagnosis. The early weeks of treatment are likely to be dominated by hospital visits, getting used to chemotherapy etc. He may or may not want that to be the main topic of conversation. You could also point him in the direction of this forum for information, experiences, advice etc.

Over time myeloma becomes just part of day to day life. Being father's day, I have spent the day with 2 of my kids, and myeloma got mentioned a few times, but inbetween the football World Cup, their work and studies, news and current affairs, and everything else!

All the best to you and your father.

Good morning Alex, I have only ever been on the patient side of the fence so my viewpoint is very formed by this.

Over all my years my family and friends only ever saw me…. not my cancer.

The reality is I had not changed n any way and we got on with living life as normal as possible.

Yes there were points in the unwanted journey that the family had to know about and understand the treatment requirements but on the whole our remote conversations (FaceTime) were not monopolised by the C word…

Blood cancers are ever so different from solid tumour cancers like Lung, Pancreatic….. and some of the great reply’s you have received from Chicken2 and Maybee60bea925  are good first hand Myeloma patient view points.