Hi, this is my first post. Im so so ashamed to say Im falling apart when Im supposed to be strong for my husband.
Hes in the prediagnosis stage of finding out which cancer he has. His Dr is pretty sure its lymphoma but needs to narrow it down. Theyve found more lymph nodes as they've done biopsies. Were doing that dreaded waiting game you'll all have been through.
We've had a tough few years and my mental health has been struggling a while due to other things. I'm also diagnosed with being autistic and my cptsd seems to have me becoming overwhelmed at the moment. And Im so ashamed to be crying and falling apart at times when he is being so pragmatic and strong.
I just dont know where to turn to find a way to get some strength. I've come here in the hopes someone can direct me to somewhere I can find some help to indirectly help him. If im like this now what will I be like when he does get a diagnosis. And we still don t know for sure which type it is. The consultant said hes hoping its lymphoma as it has the best prognosis.
Im finding mornings the hardest when I wake as it seems it all seeps when I'm open and vulnerable and i wake up wanting to scream and am in tears of despair as soon as I wake. .
Are there any areas I can go to here for carers with autism for some guidance please?
My husband lost this brother to cancer only a few years ago and my first husband the father of my children also lost his life to lymphoma, which is triggering. Im an only child and my support would normally be my husband, Im so lost and dont know where to turn for support. I need to get ta grip for him.
Hi Kizzyy and warm welcome to the Macmillan Community although sorry that you had to find us and especially sorry to hear about your Lymphoma diagnosis. I am Mike and I help out around our Lymphoma groups.
I was diagnosed way back in 1999 at 43 with a rare (8 in a million) incurable but treatable type of Cutaneous T-Cell NHL (a type of slow growing Low-grade non-Hodgkin lymphoma) ……. eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell NHL (a type of fast growing High-grade non-Hodgkin lymphoma) was then presenting so although my Lymphoma ‘type’ my be different I most definitely appreciate the challenges of this journey rather well.
As there are over 60 types and sub-types of Lymphoma you will be best staying in this discussion until he has a clear diagnosis……. Do ask your questions and J will do my best to help you out.
We can’t have a group for every type of Lumphoma but these are our main Lymphoma groups below.
General Non Hodgkin's Lymphoma
These groups are safe places to talk to others with a similar diagnosis, treatment experience, to ask questions and get support.
Once you know his type have a look at the group list above…… then click on the link that best fits your type of Lymphoma……. and when the group page opens you will see a [Black - Click to Join - Banner] at the bottom of the page, click in this box and this will then confirm that you have joined the group.
When you are ready……. you can introduce yourself by putting up your very own post by clicking [+ Create new post] or [+] in the top right of the group page.
It is an emotional time supporting family so you might find this Macmillan information your feelings when someone has cancer helpful as well as this link getting help with your emotions.
The Macmillan Support Line is open between 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00…… this service provides cancer information, practical information, emotional support or just a listening ear.
Talking to people ‘face to face’ can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing.
Do get back to me if you need further help navigating the community
As I said do ask your questions ((hugs))
Hi again Kizzyy there is no specific area of the community that supports free las with cptsd and autism but we do have our Carers only group but there most likely will not be anyone support family through Lymphoma treatments.
Sorry to hear that your first husband died of NHL…… this will obviously taint your experience but honestly this is much less the case compared to other cancer types.
Do call Maggie's as they can help.
You may want to also check out Lymphoma Action. Lymphoma Action is the main UK Lymphoma Specific Charity who have lots of good reliable information, videos..... basically all things Lymphoma....... pre, during and post treatment.
They run various Support Platforms… I highly recommend these groups as this will widen your support base and there is nothing better than ‘talking’ with others who have walked or are walking the same support journey.
They also have a great Buddy Service where you can be linked up with someone who has walked the same treatment support journey.
The LA helpline is open every week day from 10 till 3 on 0808 808 5555. This is a safe place to talk things through and get support.
Hi again Kizzyy it’s good that you have joined the Lymphoma Action Group…… you will definitely connect in with a wide support base……… as I am one of the volunteer moderators on the group I may well have been the person to approve your application 
I definitely recomand the monthly online zoom Support for family, friends and carers.
As for my story, it’s just one description of one persons journey….. we all have our own story to tell……. and yes….. when there are challenges on the journey it’s not oh no!!!!!!…… It’s what’s next?
I will keep my eyes open for you ((hugs))
