Mother of child with cancer

Hi Gem44 and warm welcome to the Macmillan Online Community although sorry that you had to find us and especially sorry to hear about your child's 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, incurable but treatable type of Low Grade T-Cell Non Hodgkin’s Lymphoma eventually reaching Stage 4a in late 2013 so although my Lymphoma ‘type’ may be different I do appreciate the challenges of this journey rather well.

We do have a dedicated T-cell lymphomas support group but I am not aware that we have anyone in the group in the same circumstances but do join the group as it's a safe place to talk to others with a similar diagnosis, treatment experience, to ask questions and get support........ T-Cell Lymphomas are rare so any help will be positive.

To join a group first click on the “Bold Link” I have created above then once the group page opens click on “Click to Join” when the black banner appears or “Join” under “Group Tools” (this all depends on the device you are using)

You can then put up your own post when you’re ready by clicking “+new” or “+” in the top right next to the group title. You can copy and paste the text from this post into your new post.

I will keep an eye open for you but if you are not sure what type you have pleased do get back to me on this post and I will help you out further.

Hi , my boy does have a T cell type of lymphoma but is apparently treatable and curable, you are very similar to my age! ️ 

it’s juts been very hard the crossover between 2 worlds I have kept very separate I order to do my job and be a mammy. 

I will attempt to join those groups you suggested, thank you. 

so hard for anyone to find themselves here

Do give me a shout if you need further help in navigating the community.

I can understand in part the challenges you are facing. Having talked with both patients and family who were medical professionals my experience has been that unless the person has had professional experience in blood cancer especially Lymphomas the world is every so different from most other cancers.

Hi Gem44 and a second welcome to the online community

I noticed that you asked in your post "what are good travel insurance companies". Unfortunately, it can be more difficult to find travel insurance when you've had a cancer diagnosis so can I recommend that you join us over in the travel insurance group where you'll find recommendations from others who have been successful. Once you've joined look for the thread called 'recommended travel insurance' as this is where the majority of recommendations are.

Most people say that it's best to phone the insurance companies rather than try and do online quotes as often at the end of the online quote it will tell you to phone the company and you'll then have to go through all the information again. Also, sometimes the broker can refer to the underwriters to see if they would provide cover when an online quote might just give you a straight refusal. 

I hope this helps

Thank you, we aren’t looking to go yet as too risky, hopefully at end of treatment and cured but that’s a great tip! ️️

Hi again Gem44 from my long experience from living with and being treated for Lymphoma the majority of Travel Insurance Companies will look for Lymphoma patients to be 2 years in full metabolic remission before offering insurance at an affordable level due to the reduced immune system and infection risks following the treatments used to treat Lymphomas.. 

Thanks highlander, I realised I misread your message before and you said you were diagnosed a LONG time ago! 

so x2 years in remission o.k that’s great. Hopefully we will be in remission for a time before we want to go away anyway. ️

You can see my rather complicated story in this link See my story 

For the first 16-17 years I only ever was in partial remission the longest 9 months but I am over 7.5 years out from my last treatment, still in remission and doing great.

Do introduced yourself to the T-Cell group….. as T-Cell Lymphomas are rare the group is not busy but it’s a good place to get support and you never know there may be someone n the group with the exact same type of T-Cell as your son ((hugs))

Aww that’s helpful, ye, my experience of oncology is when they come to intensive care, I have looked after some of families that we now sit with. 
it does colour my view and make is very negative but due to the amazing team looking after my son I now realise I do a small minority of patients in my work. I know very little about “normal “ treatment so I fee better about things.