Feeling very low- worried mum

Hi Leileijoy and a warm welcome to the Community although I am sorry to see you joining us and to hear about your daughter.

I am Mike and I help out around our various Lymphoma groups. 

I don’t have Anaplastic large cell lymphoma (ALCL) but for some context 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 skin 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 - Not Otherwise Specified NHL (a type of fast growing High-grade non-Hodgkin lymphoma) was then presenting so although my Lymphoma ‘type’ is different I most definitely appreciate the challenges of this journey rather well.

More so as amongst my many treatments I have had 2 Allo (donor) Stem Cell Transplants the first was in June 2014 with the second in Oct 2015…… and I remain in remission to this day.

ALCL is a type of T-Cell NHL so you may want to join and post n our dedicated T-cell lymphomas support group but more importantly our Stem Cell Transplant support group.

I will keep an eye open for you on the groups.

Thank you Mike x

Hi Leileijoy, so very sorry about what you're going through.  I really can empathise, my daughter was diagnosed with a very rare cancer just over a year ago. She had 8 cycles of brutal chemo, 3 surgeries and 15 sessions of radiotherapy. Now 5 cycles in to a further 14 chemos. They say she's responding well but the treatment has made her so ill.

You have to have faith in the medical team. They want the best outcome for your daughter. Although they've said they haven't come up against her type of cancer before, the multi disciplinary team will have huge experience and will have discussed your daughter in great detail before deciding on the best course of treatment.

I survive by living in the moment and doing my best to enjoy the little things. When daughter is feeling well enough, we try to do something nice - even if it's only a cuppa and cake in a nice tea shop or a walk in the park.

You'll find a way through this - as mums, that's what we do. You'll do it for your precious daughter.

Sending you and your daughter love, strength, and the biggest hug.

Hi again Leileijoy I was wandering how things were going.

To widen your support network for both you and indeed your daughter you may want to 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 regular Support Platforms both for patients with a group specifically for young people the same age as your daughter but also for family and caregivers…… I highly recommend these groups as there is nothing better than talking with others who are walking the journey.

They also have a great Lymphoma Action Buddy Service where people can be linked up with someone who has walked the same treatment journey both fir patients and family and caregivers.

Lymphoma Action have a Lymphoma helpline on 0808 808 5555 open every week day from 10 till 3. This is a safe place to talk this through and get support

I’m so sorry to hear about your daughter and I hope you get some better news soon. I’m new to this forum and just posted about my 32 year old daughter. As a mom I don’t think there is anything worse than facing a scary illness of a child at any age. I see more and more stories about cancer in young adults and I’m angry confused and alone - full of guilt that my oldest child has to have this problem and feeling helpless and trying to be strong for her 31 yo sister who is her only sibling. I hope to make a connection with you and chat.