Telling family

Hi Pifkin,

I am really sorry to read your news and my thoughts go out to you as I remember how utterly terrible the time just after diagnosis was. The Covid situation must be making things even more difficult so I am definitely feeling for you at the moment.

Ultimately, there is no right or wrong in this and you should decide to do what feels best for you. For what it is worth, my approach was always to be open and honest. My situation was perhaps a bit easier as I was in hospital for around 10 days having lots of tests done so I think my family was already expecting something bad was happening. My children were quite a lot younger (8, 6 and 2) so we had to explain things in a way they would understand, but we made the decision to not hide anything from them and to keep things factual - I was poorly but the doctors had a plan to make me better. Your situation is much different and not doing things in the same room must make it so much harder but I wonder if the same principles can apply? The facts are you are poorly, but the doctors have a plan to make you better? A cancer diagnosis is completely devastating, not what anyone would ever want to happen to someone they love, but it has happened and I always think it is best to let your loved ones know the facts. And personally I would do it at the first available opportunity. I think it is better to just get it out there, in the most sensitive and tailored way that you can. It sounds like all your children need to be told the message in different ways and you will probably know what will suit them best but I think the fundamentals of being factual as to your situation is still the right way to go.

What treatment are you starting on? It is factual to say that there are lots of great treatments for myeloma and lots of evidence that people do really well when they start on treatment. I really hope that you will experience this Pifkin.

All the best

Greg

Hi Greg

Thankyou for you kind words . It is so hard for us to come to terms with , but I have managed to tell one of my sons with the mental heath issues , had to bend the COVID rules a bit , as could not do it any other way .It was very emotional of course . I start my treatment next Friday . I will be having Bortezomib , steroids , Thalidomde and Zoledronic acid . This will be for four weeks then a break for two/ three weeks . In one way I am lucky as I don’t feel I’ll. Over two years ago I was bitten by something ( may be tick) and had what I think was Lyme disease , was treated but all bloods test came back negative . Lots of on going blood tests show raised light chains , and bone marrow biopsy confirm that I have Myeloma . 

Thanks 

Caroline ak Pifkin 

Hi Caroline / Pifkin,

I think something like this is incredibly hard to come to terms with. I am almost 6 years after diagnosis now and whilst I very much live “normally”, there will still be times that I catch myself and ruminate on how and why. There was a whole spectrum of emotions I went through - shock, grief, anger, before I finally got to acceptance - it wasn’t a linear process, there were lots of blips along the way but eventually the times I felt better mentally grew and grew to the point that it was not a problem anymore. I’m sure you’ll get to this space at some point, but it is going to take time, so please don’t give yourself a hard time if you’re feeling some difficult emotions, that’s definitely normal and expected.

Your treatment plan is very similar to mine - I just had cyclophosphamide as I couldn’t have thalidomide. Generally speaking I tolerated the treatment well with sleepless nights and mood swings the worst I experienced due to the steroids. I am really hoping you will find the same and that the treatment does it’s job of putting myeloma back in its box. 

All the best with talking to your daughter and other son.

Greg

Hi, 

I understand it is incredibly hard to break the news to your loved ones, even more now that we can't be together. 

In my case we decided to let the children know, mine are teeneagers 16 & 14 , they took the news a lot better than I expected. 

I believe the best is to tell as soon as you are ready and to know they are more resilient than we think or expect. 

But every one is different and every family situation is different too. At the end of the day there isn't  a right or wrong way, you must do what feels right for you and your family. 

Best of luck with everything. 

Xx

Just to let you know have managed to tell all the family ,and I thank you for your support . Have now emailed my art students to let them know that their weekly art lessons on WhatsApp might have to be postponed if my baby can’t cope .So I am getting there . 
thanks again x 

Not baby ! Body ! 

Hi Greg,

I was diagnosed today. I'm in pieces. But, I just want to thank you for you words with Caroline that helped me make some sense of how to discuss this with my family.

Kind regards. Paolo

Hello,

Thank you for sharing.

Kind regards, Paolo

Hi Paolo, we are here whenever you need to. Hang in there, is hard but you will get through it. When are you starting your treatment? 

Thank you so very much, Vextal. That's a great comfort. Not yet in a position to discuss treatment as diagnostics not yet completed.

Take care.

Kind regards, Paolo