I'm not sure where to start. My husband has lymphoma as a rare side effect of a kidney transplant earlier this year. His last chemo was in August and they told him in mid-September that (after an initial delay of September's treatment) that his cancer was no longer treatable. They estimated he had about 12 weeks. The only possible hope for more time is if he could get onto a clinical trial specific to his condition.
The trial they referred him to sadly could not take him on, but that hospital suggested another which we are hoping he might get accepted on to. It offers a small hope (a last hope), but the waiting extends his time without treatment which is a worry.
I'm feeling like his initial hospital (not those running the trials) has just washed their hands of him now. He's not treatable, and not officially dying either while the trial is a possibility But he's had no treatment since mid-August for an aggressive cancer, and nobody - literally nobody ever gets in touch or wants to see him since they gave his terminal diagnosis last month. We're in a medical no-man's-land. I don't know what I'm expecting, but some contact with the base hospital - a weekly call to check in on us maybe - would make a world of difference. I've called them twice and have been told that we just have to wait to hear about the trial, and if that doesn't come off he'll be passed on to a palliative care team.
Until (if) he gets on this trial he's a dying man, and I don't know how to handle that. I don't know what I should be looking out for, what's normal/not normal. At the moment he doesn't really belong to anyone medically and that's really hard. It's all on us.
Is it normal to be left like this? I do get that all medical staff are really stretched, but if there was any capacity to keep in touch with those in our position it'd make the world of difference.
Hi Kitlou and welcome to the Online Community but so sorry to hear about your husbands diagnosis.
A cancer diagnosis like this in the family can be such a challenging and stressful time but I do hope you will find the Community a safe place to get support and to ask your questions.
I have lived and been treated for a rare type of incurable Non Hodgkin’s Lymphoma for over 23 years now and so far we have found the next treatment for me.
You may want to check out the Lymphoma TrialsLink on the Lymphoma Action website. We do have a number of Lymphoma Support groups on the Community but at the moment there is no one in the same position as yourselves.
When it comes to the practical and emotional challenges of supporting family you may also benefit from joining our general Carers only and Supporting someone with incurable cancer support groups where you will connect with others navigating the same support challenges.
If you'd like to connect in with a group click on the Green (Bold) links I have created above. Once the group page opens click on the black banner that says [click to join] at the bottom, or the [Join] button under "Group tools."
You can then introduce yourself by putting up a ‘new post’ by clicking in the box near the top right with + New or + (Depending on the device you are using) and you are ready to go. You could copy and paste the text from this post into your new post.
Macmillan have many support services so do check out the Macmillan Support Line is open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00. These services provide cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear. We also have our Ask an Expert section but do allow a few working days for a reply.
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 and aim to give support to all the family.
Please do get back to me if you need further help.
((hugs))
Many thanks for the information (and virtual hug!) Mike - that's really helpful. I'll definitely look at the trials link and will take a look at those online groups too. Thank you 
I am sorry that things have developed the way they have but it does unfortunately happen.
Lymphoma Action have a very good Lymphoma specific helpline on 0808 808 5555 where Sharon or Nic will be on hand to give you some support and my be able to help you out with any info on trials - open every week day from 10 till 3.
((hugs))
