How to help son with diagnosis & biopsy risk

Ruthmumpositive 1 day ago

3 replies

Hi, my son has recently been diagnosed with a tumor by his spinal cord & the first step is a biopsy (high risk due to location) . The surgeon we just saw was brutal in outlining the possible risks & left no stone unturned leaving my son (28 years old) & his girlfriend absolutely terrified about the procedure over 10 days away, he is in bits! How do I help him during this time? I try & stay positive through visualization, imagining him walking out of the hospital after the successful surgery. This is the only scenario I can allow myself to imagine. this type of encouragement does not help him. I would appreciate support from others in terms of how they have helped their loved ones. I am also in complete shock at the surgeon’s candour. How in the world do they expect patients to go in to the op positively knowing all the possible risks???? I asked him this myself, but he said he had to know all the facts. I will be recommending my son call the macmillan line tomorrow as soon as it opens but in the meantime, any guidance would be welcome. Please. Thankyou in advance, Ruth

admin 1 day ago

Hello Ruthmumpositive,

Welcome to our Online Community. 

We’re sorry to read about your sons’ recent diagnosis and all you’re going through as a family. 

It’s understandable that you have questions and want to do all you can to help him during this time. 

Hopefully other members of our Online Community will see your message and share how they have helped their loved ones. I will also ask our Information and Support Nurse to respond to you as well, in case that’s helpful. 

If you are unhappy with the care your son has received, you can raise any concerns you have with a staff member at the hospital if you haven't already done so. There is also the Patient Advice and Liaison Service (PALS) or Patient Advice & Support Service (PASS) in Scotland who are there to answer questions and provide advice when it comes to concerns around NHS treatment and care. You can find more information about the Patient Advice and Liaison Service here: https://www.nhs.uk/service-search/other-health-services/patient-advice-and-liaison-services-pals . 

Whilst we’re unable to comment on the care and support provided by others, our Support Line is here to offer a listening ear if you, your son or his girlfriend would like to talk about what you’re going through or how you are feeling. You can reach us by calling Freephone 0800 090 2309 or via online chat. 

Take care,

Marie Curie Online Community Team 

Marla 1 day ago

Hi Ruth, my name is Marla and I am a nurse with the Marie Curie Information and Support Line. I am so sorry you, your son and his girlfriend are going through such a difficult time, it must be extremely challenging taking in all the information you have been given and an emotional r ollercoaster for you all. Thank you for reaching out to us. Whilst the difficult conversation with the surgeon has left you all feeling shocked and overwhelmed, they have to give you all of the information on the risks associated with the surgery. You may want to consider on reflection, discussing with the surgeon how the last consultation left you all feeling and why. If you feel able to, having a discussion with your son to explore his feelings and if he would want to further discuss what happened and what steps (if any) he would want to take next, asking him what you can do to support him may also be helpful. I hope this helps, please reach out to us again if we can be of any further support. Take care.

Ruthmumpositive 7 hours ago

Thankyou. Marla, I asked the surgeon there and then how on earth he expected anyone to go to the surgery remotely confident or in a decent state of mind after the news they had received. He simply said he was sorry, but he has to tell us the facts. I will ask my son what support he wants from me, thankyou- I can’t believe I haven’t asked him that yet - thankyou