Hello....
This is proving difficult to write and come to terms with, so please bare with me as I wipe away tears for the umpteenth time.
Today, was a day I never ever thought I’d ever have to face. That is being told that my 16 year old son has been diagnosed with cancer. I never want to hear tears like I did this evening when my wife and I told him the news. Especially as he’d had a great day at college and was buzzing afterwards. To be brought down with a crash was horrible. Then there was telling his brother who promptly burst into tears and hasn’t really stopped sobbing. Oh and of course other family members and close friends.
So, where did it all begin? Around 4 months ago, I don’t remember exactly when, my son found a lump in his chest. He immediately came and told us and we arranged for a doctors appointment (sensible lad). The doctor examined him and he said that all it was likely to be was a fatty lump or cyst and to enjoy life.
A few weeks ago, he son came back to us and said that it felt bigger and was concerned. So, we took him back to the doctors who again said it was more likely to be a fatty lump or cyst, however, as it had grown to be on the safe side he’d arrange an ultrasound.
14th January he had his ultrasound, but the chap who looked at it couldn’t really tell what it was at the time and he was sent home. Around 5:55 pm that same evening we had a call from the doctor (I remember that time so well). They’d had another look at it and it had raised concern. It wasn’t a fatty lump or cyst as there were blood vessels attached. As a result he’d arrange for a MRI scan to be done urgently.
I’m sure people know that this period of time is horrible. As humans all kinds of things go through your head. Could it be? Let’s hope not. There were obviously some tears and thoughts cross your mind, but ultimately life goes one.
Monday, my wife received a call, can we bring him in for the MRI on Tuesday at 6:40 pm. Which we duly did. He was in that scan for nearly an hour but we knew he’d be in there for a considerable amount of time.
Again, that limbo period as we wait for results. You hope and pray that the results are fine and it’s nothing untoward. Well, today we received that call or should I say my wife took that call. I received a text from her and could tell by the tone it wasn’t good.
i walked through the door and bless her she was in tears. It was highly likely that it was a sarcoma. I don’t know about people on here but your head goes into a complete whirl and you can’t always take things in.
A biopsy has now got to be arranged, followed by likely trips to the Royal Marsden Hospital to have it removed and further treatment if required.
Thank you for listening to my ramblings. I just wanted to get things down, because you always think your little family unit is invincible. Then you have the stuffing literally ripped out of you by something like this.
Does anyone have any experience of the Royal Marsden and want to expect from this? Advice would be appreciated - Thank you.
Good morning and second welcome to the Online Community, although I am sorry to see you finding us and so sorry to hear about the issues your son is going though.
A cancer diagnosis can bring a lot of stress, confusion and many questions on all the family but having been on my cancer journey for 20 years there were a few things I learnt quickly.
Deal with facts, so get as much information from his team as possible as this will turn down the noise between your ears and will develop some control in this.
Don't aimlessly use Dr Google as this confuses things, stick to known sites like Macmillan and talking with people who are on the same journey can help a lot.
Can I direct you to this link to our very supportive Soft tissue sarcomas group as this will open up your concerns to a wider audience who know exactly what you are going through at the moment.
Just follow the link I have created then hit the ‘Join This Group’ tab just under the main group name, then go to the 'Start a Discussion' tab and set up your very own Discussion and introduce yourself to the group and ask your questions.
You may also find our Carers Only, and Friends and Family groups to be good places where you can connect with others support family through their cancer journey but more importantly the carers care for each other.
You may find our various Macmillan Support Line Services to be helpful - call them on 0808 808 00 00 This free service covers Emotional Support, Practical Information. Clinical Information, Financial Support and Work Guidance mostly open 8.00 to 8.00 but check the link.
We also have our ‘Ask an Expert’. section where you can post questions to our mostly Volunteer Experts but please allow 2 working days to get a reply.
Our Online Information and Support Section is a good place to find information covering cancer diagnosis, treatments and pages covering most types of cancers.
When you feel up to it try putting some information in your profile. This really helps others when answering. It also means that you don't have to keep repeating yourself. Just click on YOUR username, select 'Edit Profile'. Put as much or as little in your profile and you can amend it at any time - you can see members profiles by hitting our forum names.
All the very best.
Well done,
Clear information is important in these early stages as with this you can all make plans to get through this.
I would always say get a family note book and this is the place where you record EVERY question that comes to mind. The note book goes to all appointments and when the Consultant says ‘have you any questions?’ the note book comes out.
A lot of people freeze at this point and are overwhelmed by information. So you can say ‘yes we have some question’ you go through each question one by one, making sure you write down all the answers you get. If you don’t understand something you stop the Consultant and ask them to put into language that you understand and remember the record everything they say and again if you don't understand, fold your arms and say 'explained that so we understand' You don't want to be going home after an appointment saying 'I wish we has asked ........'
The note book also helps your sleep!! As these questions often come at silly-o’clock so get the note book out and write the thoughts down and park them - it does help a lot.
I would always recommend that there should be two people at appointments as two pair of ears take in far more and the onlooker will catch the stuff the patient will not hear.
I would also recommend that you go have a cup of coffee/tea straight after the appointment and unpack what had been said so that a clear understanding is made and with this you can plan to move forward.
All the very best to you all during this time.
