Feeling lost and lonely

Hi  and welcome to this corner of the Macmillan Community and so sorry to hear about your husbands diagnosis.

I have a different type of rare Non Hodgkin’s Lymphoma (T-Cell) but noticed your post and wanted to reach out to you.

How you are felling is normal as these first months and yes, it does take months to get all the information together is a whirlwind. But it is very important to get all the jigsaw pieces together to get the very best plan put in place.

Its hard to standby and watch him suffer and I do remember these times well before my treatment started but he assured once treatment starts it works very quickly and effectively.

One thing to note is that the stage number is used as an indication of where the cancer is presenting, what treatment should be used and for how long....... it is not to be seen in the same light as in solid tumour cancers. Indeed I was stage 4 for years and my last treatment was over 5 years back now and I am in remission and doing very well.

Its always good to talk and the Macmillan Support Services provides lots of information, support or just a listing ear.

Most services are open 8am to 8pm, 7 days a week and it's free to call on 0808 808 00 00 have a look by Clicking here to see what is available.

You may also want to check out Lymphoma Action as they may be able to set you up with a Buddy

.lymphoma-action.org.uk/support-you

We are around to help out so do keep posting.

Thank you so much for your advice. Much appreciated.  I do understand that the treatment is very good and cannot wait to start. My husband also. Long journey and it is good to know we have the support of this forum.  I will start the day with more  enthusiasm.  Pleased you are now doing well.  

Lesley, good that you are starting the day on a positive footing, it’s good to see every new day as a step in the right direction,

Where will his treatment be done as there may be someone who was treated at the same hospital?

I have been on my cancer journey for over 21 years now (hit my name for my story) as my type of NHL is classed as incurable but treatable but would never see any remission....... but remission was achieved 4 years back and living the dream.

One of our survival slogans was:

"A blood cancer journey is a war of both Body and Mind - Leave the Body to your Medics and You deal with the battle in between the ears”

((hugs))

You are an inspiration . He will be treated at the Royal Derby hospital. So far all the team have been amazing and our GP so no worries there. I have just told my husband he looks blighter this morning.  That could be because I am after your help. Xx

Hi Lesley, 

I’m the Mum of a lass who had HL and can say that although lengthy, treatments now are even better than when she was diagnosed in 2004. She’s in remission! 
way back before this site got so changed there was another group for HL and on there was a hugely long thread joined by a good number of folk who were diagnosed about the same time as each other. It was comical as well as supportive and informative but now closed. I am friends with a few of those folk on other (social) media and most are getting in well with their lives in remission. in fact one of them is living (working and back to running) in the Matlock area. So please do reel encouraged.

if you wish, there is another, more specific lymphoma charity, Lymphoma Action, you can find them online or phone on 0808 808 5555 and they have a number of services, one being a Buddy scheme, putting people in touch with each other who have similar problems and similar stages of treatments. 

Sending you a big hug xxx

Thanks for reply. My husband is 78 and not coping very well at moment.  We are both looking forward to treatment to start. He is feeling so ill today.  I am waiting now for doc to come as when I phoned haematology department they think He needs admission to hospital. X

I hope they manage to help him very soon. One of the people in that long thread was in his late 60’s and reached remission which held, I haven’t heard from him recently but guess all is well still.

Hugs xxx