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A mum who lives a long way away

Posted by

Hi all

tomorrow, my son  (27) will be having his first bout of chemotherapy, and I will be coming over from France.

We have known for most of the summer, he has been having tests, scans etc. he found a lump in June and sensibly took himself off to the doctor.  He was told he needed further tests, blood, scans etc, and then finally a couple of weeks ago he was diagnosed with Hogkin's Lymphoma. .  He is on stage 2a - which means there are no symptoms, apart from itchy palms.  
So he still looks normal, no weight loss etc.   He will be having 8 lots of chemotherapy,
 I came over in July, when the first tests started, but was only over for a couple of days.  My son was been adament that no-one knew anything, and I respected his request not to say anything.  But, eventually , I think after speaking to the consultant he realised there may be changes and his illness may not become unnoticed.  He is such a private person and he does not want to be defined by his illness and hates the thought of having it discussed, or having lots of people being 'sympathetic'.
So, that's it really - I will be supporting him as much as I can, both in the Uk,. and back in France, but it is so hard - we chat a lot electronically, I am trying hard not to treat him any differently.
He has moved back in with his father (we have been divorced 11 years),.  I am trying to keep all channels of communication open with him for my son's sake, and I know my ex-husband will do the same.  
So, any suggestions as to how to support him, both in the UK and at a distance?  Any suggestions gratefully received.
Posted by

Hello CarolBT, 

welcome to the Macmillan site, I see you have already made your way to the HL group, for common thread on support for your son and to get aupport for yourself you might like to try the Friends and Family group. I was in the reverse situation for a while with me being ill and my grown up daughters being away. My daughter bought a gift where I had to register and a mystery gift was sent to me each month that was supposed to be something to help with depression. At the time I felt like I couldn't handle that and the gift card ungrately remains unused. Her purpose was to take stress away from me, you know I would have preferred a game over the Internet with her regularly that would have achieved the same purpose, for me as I suppose I value her time and contact a simple thinking of you text for them to let me know what's going on in their day to keep my mind of things. We are all different though I wonder what your son likes and that you could do, it may be that your messages and visits are already sufficient.

There is some information on talking about cancer and Keeping in touch in and around the link I've added.

Best wishes

Posted by

Hi Carol, a second welcome to the Macmillan Community but sooo sorry that you have had to look for us.

Your son is having a hard time and the journey before him will get harder before it gets better. But we are seeing more and more people surviving the battle and going on to live full and healthy lives. But the distance you are away from him will multiply the issue for both of you.

I am a Macmillan Volunteer and help people get connected in the site, I am not medically trained but I have been on my own Non Hodgkins Lymphoma journey for over 18 years.

KT has highlighted that you are part of the Hodgkin's lymphoma Forum, you will find it helpful as you can get connected with people who have walked the HL journey as a patient or carer.

It may be a place that your son could consider looking at. Its a great place for support and at the same time he is safe as he can hide behind his forum name ;)

At some point in time he will have to take some people with him on his journey as he will not be able to hid it all the time. He needs people to support him and to call on when he needs help.

This is link to the Macmillan Lymphoma Info page, but I am sure that you have done your research already.

We will always be around to help at any time.

Posted by

Thanks so much for taking the time to reply.  I am sitting at the airport now, reading everything about the disease, treatment etc, the site is so useful.

I have been something of an ostrich when it comes to searching for information - relying on my son to tell me as much as he wanted to.

I now think that has been a bit of a mistake - I think he has been playing the seriousness down somewhat, and I have been a little foolish in believing him, perhaps because I wanted to.  Time to woman up I think.

Lots of really good advice regarding communication though, I shall try it out tonight.


Posted by

Hi Carol, good flight.

I meant to say that I would always recommend that patients and/or carers should start a note book/phone notes and keep a record of ALL the questions that come to mind. This can happen at sillyo'clock when you can't sleep as your mind is in overdrive. Its just a good way to pigeonhole stuff until you can actually ask the questions.

Also keep a record of what the Consultants and Nursing staff are saying, any advice, types of treatments, drugs etc as this info can be very useful if you have to come onto the forum and ask questions.

I took all my family and friends with me on the last 4 years of my 18 year NHL journey. Posted on my Facebook page every day, told the truth as to how I was doing, when I was bad I told everyone and celebrated the times that needed celebrations.

Take each day as it comes. Your son may not admit this, but you may find him to be on the scared side. If he has been consulting Dr Google he will most likely have come across the negative side of the internet, but that is just not the case. 

We are always around to help out - and a good Highland ((hug)) to keep you going.