Just need some support

Hi Caz777

A very warm welcome to this very supportive and friendly community.

So sorry to hear about your son’s diagnosis,did the ENT/Oncologist say that it is a HPV driven Cancer (+16)?these have over a 90% cure rate.

I can only begin to imagine how difficult this must be for you as a Mum to 2 children with ASD and ADHD. I appreciate the challenges you face and fears of how you can be there for them both.

My first tip would be to speak to your McMillan Cancer Specialist Nurse (CSN) they will be your main contact person ( for your team) Does your hospital have a Maggie’s Centre( these offer fantastic support if you are near one ) also visit your GP to discuss your fears as there maybe support from the “social prescribers’ who can offer tailored support ,contacting local charities/services.

Other thoughts for possible support

Macmillan Cancer Support:Online and on the phone 

National Autistic Society:

Ambitious about Autism:

Centre for ADHD and Autism Support (CAAS):

It’s a very overwhelming time and wanting to cry constantly is the norm.We will abe here to help you and your family through this . There is never a daft question and always seems to be someone available to offer a friendly ear or some advice based on there own personal experience /knowledge base.

I’ve worked with young people with SEND for the past 30 years and happy to offer you any further support if you like just send me a friends request at anytime.

Snding you and your family a virtual hug.

Debbie

My diagnosis T4N2bMO+16 I am 16mths post treatment 7 weeks radiotherapy and 2/3 overnight chemos

Hi Debbie

Thank you, it is hpv positive one small right tonsil and 3 nodes on the same side, its so much to take in, they are probably going to say a feeding tube so 2 nights in hospital, they said the chemo is a milder one, and it looks like 6 weeks radio, we are see them on the 30th to go over it all, also as my son can't do public transport it has to be cabs its going to cost a lot of money, and I can't work as im a carer for both of theme am new to this so I don't know how to add friends, I really appreciate you taking the time to help me, thank you. Caroline

Caz777 said:

I don't know how to add friends, I really appreciate you taking the time to help me, thank you. Caroline

Hi Caroline. 

Click on Debbie's name 

At the top right of the page is a + sign. On a computer it says connect on a phone it's just a + sign. Click on that to get a drop down menu. Click request friendship. Once you are friends you can swap messages.

Once you are friends and Debbielouise  sends you a message it will appear here

Hi Caroline and welcome from me, too.

I'm sorry to hear about your situation.  My eldest grandson has Autism (non verbal so no public transport unaccompanied).  When the time comes, do try for Hospital Transport.  The drivers are fantastic and although there's a lot of waiting involved, we saved an absolute fortune as neither of us drive now.  As my bloke's carer, I was allowed to be with him on every trip during RT and administer to his needs.  I'm hoping your daughter will be accommodated too if feasible for yourself.  There's always a way round things in difficult times and folk will help you if you look for it.

Sending you a virtual hug and let the tears come privately, as it can be a good release during worrying times.

Good luck lass.

Gill xx

Hi Gill

Thank you for talking to me, ive have looked in to everything and the help is just not there, sadly there is no funding anywhere, its just so much to deal with and im so scared that im not got to cope with it all, im scared something will go wrong and my son will suffer, I have really high stress and anxiety its so hard.

Caroline 

Oh love.  I'm so sorry for what you're going through, but do reach out for help and advice as it is there for you and your children.

As Debbie advised earlier in the thread, get in touch with your Macmillan support team as they're brilliant and will help you.  Could you make an appointment with your GP?  Be assertive and when you see your doctor, tell him/her everything that's worrying you.  I find making a list of concerns helps when seeing the professionals, so nothing gets missed out.

It's important to seek help for yourself, too, as you can't carry this burden alone.  

When all this started for us, six months ago, I made a list of organisations I thought pertinent and called them, writing down their phone numbers if I deemed them valuable.  Phone numbers were coming out of my ears but I now know who to reach out to in times of need.  Remember to keep your phone charged up!

Keep your pecker up and eat and sleep as much as you can.

Sending hugs to you and your family and, when you get time, please let us know how things are progressing.  I'm confident you'll get there.

Gill xx

Thank you so much for everything. Caroline xx

Hi there, so sorry to hear about your sons diagnosis. I was terrified about my husbands diagnosis at first, he's now about 16wks post treatment, he is recovering well, the treatment wasn't too bad at the beginning,but then side effect started to show, these were cruel, but we took one day at the time and we are getting there slowly,I can only imagine how challenging this journey will be for you and  your family and I wish you all the best,don't expect miracles and take one day at the time.I do hope you have some support of friends or family.As for transport, most of the hospitals provide an ambulance service we got a number given, that I believe is nation wide, it's 0800 0323240, we got transport for every appointment there and back.At the end of treatment the desk should arrange transport home Once you dialed, you will get asked to choose what area you live in, ie.we are in the north west,so we need Merseyside, once connected they will ask some personal questions in regards to your sons case, I am not promising anything, but give it a go. All my best wishes and hugs  Mel

Hi thank you for your help, if you don't mind me asking what did your husband have?, im just finding everything so hard.

Caroline

Hi Caroline, how are you holding up? How are your kids coming to terms? Your son must be terrified. My husband got diagnosed with T4N3M0 with throat cancer,lower tongue back in September,we knew something wasn't right when he discovered a lump developing on his left side of his neck,once diagnosed,the ball got rolling quick, Mask fitting,PEG fitted, MRIs and PET scans left right and centre, started 30rounds RT and 2rounds Cisplatin CT by  the end of November, finished treatment NewYears eve,now 16ish weeks later, the side effects are easing, they started half way through treatment, sore throat, slowly not able to eat solids,so dependent on his PEG,lost about 40kgs in weight,(40inch waist down to 34inch),tiredness and fatigue,no saliva,thick mucus,severe burn marks either side of his neck,was all painful to watch,i found myself crying to sleep at times,  he's alot better now,he's slowly getting back to normality,well a new normality, life won't be back to the old for a while I guess, we are now experimenting with food,having to find food he can eat and taste, working on him having the PEG removed next. I am not gonna lie, but if this is what they mean by 'for better and for worse'... it's an understatement. All I can tell you, that this journey for us was testing, I can only imagine what rollercoaster you guys will be on. You gonna have to be twice as strong then I had to be. I am here if you feel like talking. Don't give up hope,we got through by telling us over and over, that we may have  cancer, but it won't have us. Stay strong. All my love and wishes for now to you and your family  Mel xx