I'm single mum and parent carer to my adult son who has autism spectrum disorder. By far, the single hardest thing has been what, how, and when to tell him about my cancer and chemo, which starts this Wed. He can be very blunt at times, which is hard for me now when I'm so scared and emotionally fragile! He also has physical and high emotional temper outbursts, understandably now with all the stress flying around, but I haven't got the energy to handle them as I normally would. We don't have any other family, but I've discovered some really great friends, which has been fantastic.
We manage mostly through very black humour but already I'm really tired and I haven't even started treatment yet. I also feel really selfish being so frightened about this for me, when my focus should be on getting him through this, esp if I don't make it. I HAVE to think about how to prepare him. This is not negativity!
Sorry: I'm just venting. I'm not sleeping much and just feeling a bit sorry for myself. Some bracing advice please would be useful! X
Ok. First mistake. Auto correct got me! Is therea way to change the heading to my first post: should have read CARING for kids with special needs. Argggh.
Welcome to the online community group and I'm very sorry that you have had to join us but you have found a place where everyone is very supportive of each other and I'm sure that once you've settled into the groups you've already joined and start to post questions and join in the discussions you'll meet many people who'll be willing to share their experiences with you.
I'm only going to touch on a few of the points you made on your original post.
First of all go back to your original post and at the foot look for the word MORE and click on it this will bring up two or three options click on EDIT and this will take you back to your post before you pressed POST when you're back there you can make any amendments you want and when you've finished press POST again and you message will be as good as new.
You mentioned Wigs in your profile and you can get information from the ladies (and Gents) in our monthly discussion thread called July Chemo Chat and I'm sure if you pop your head round the door and ask your question on wigs there you get lots of helpful advice including alternatives to wigs!
This may be of interest to you in the Breast group (don't be put off by this) there is a long running thread called AWAKE where mainly the ladies who have trouble sleeping hit the keyboard and have a night time gossip and I am assured that it is not restricted to the members of the breast group and they make everyone very welcome, and you may get some good advice on head wear also.
No matter which group you post in never feel the need to apologise for venting you are amongst friends all of whom feel exactly as you do wanting to let off steam and feeling angry and not sleeping. This is a safe place to come to where no one will judge you but will be on hand to give help, support and advice and share their experiences with you 7 days a week.
I afraid I don't know enough about your diagnosis but you have a fellow Scot from your part of the country called Mike Thehighlander who looks after the groups you are a member of and I'm sure he will be along in a few hours to give you his welcome and some information and some advice.
I also hope that someone will be along with some encouraging words on how best to prepare your son about starting chemo on Wednesday. I don't think you are showing any negativity you are doing what all mothers do and try to put the needs of the family first but you must take care of yourself as you prepare for the start of your treatment.
Apart from being able to come to the online community for a chat you also can phone our telephone support line and speak to one of the friendly advisers in confidence about anything and they will listen to everything you have to say and give you advice themselves or pass you to one the expert teams who can advise on all manner of things including anything financial or they may suggest that they pass you to one of our specialist nurses for a chat and all this all happens by making 1 freephone telephone call to
0800 808 0000
Between 8 am and 8 pm 7 days a week.
I hope I've helped little and apologies if I rambled on, it must be the Scots in me!
I hope you will keep in touch with the group members and that you get the help you need very soon.
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Hi MaggieAnnie and a second welcome to the Online Community but so sorry to hear about your diagnosis and family challenges.
I MIke Thehighlander that my friend Bodach tagged me into your post.
Ian has given you some great links so please follow them up.
As you have already joined the Diffuse large B-cell lymphoma forum why not come over and go to the 'Start a Discussion' tab just under the main group name. Set up your own Discussion and introduce yourself to the group - you could just copy an paste what you have in this first post.
We have lots of folks who are going through or have been through treatment for this type of NHL.
Please understand that blood cancers are very treatable, yes, it may be hard work at times but the success rate is very high with people in the group on long term remission and living and living life to the full.
I don’t have a child with autism but do have a family member who is also going through cancer treatment who has a son who also lives with autism so have some basic understanding of the challenges you are facing.
Come over and post on the group I gave you the link for and let’s see if we can unpack the journey you find yourself on.
Mike - Thehighlander
It always seems impossible until its done - Nelson Mandela
So now the 2nd question is how to remove a post/reply now that I've fixed the issue and it makes no sense. X
Hi Bodach, or do I call you Ian?
Thanks so much for all your patiently explained and detailed information. I'd have been back to you sooner but I've been lost in the frozen wastes of " not being in the right place/can't see the post I want". Also I'm on a mobile, trying to kid myself I might get some sleep if I'm in bed. I have edited my post at least 3 times and it's suddenly dropped me out of the site so that I've lost all my carefully crafted words. Grrr. Neither does it help that posts on my phone appear in something like 3 point fonts...
Once I'm fully trained up in navigating the site, I'll definitely follow up all your suggestions. Anyway so many thanks, and esp for the blindingly fast response time. X
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