Hi all,
I’m new on this website as in deep need of advice and support!
My husband (50) had Lymphoma 2 years ago treated successfully through rigorous Chemo. Unfortunately lymphoma is back with the added bonus of now being diagnosed with Meolodysplasia and gene problems too!!
Dr. are giving us a few weeks to a few months to live! We are devastated!!!
Chemo start today for Lymphoma but we are told there is nothing they can do to tread the new conditions.
Have any of you been in a similar situation? Challenging Dr. to try to get on trials?!?!
Many thanks,
Sandrine
2 Likes
Hi, Sandrine, a great big welcome to our community forum, I hope you find it as supportive and informative as I do. I cannot imagine how you are both thinking and feeling at the moment. What I have realised is that I need to write down all my fears and questions for my medical team and make sure I ask all those things, like 2nd opinions and getting onto trials, to my medical team and also the follow up questions. We are all here to support you both and also the Bloodwise support line is free from UK landlines and mobile phones on 0808 2080 888 and they are available to take your call Monday to Friday from 10am to 4pm and on Wednesdays from 10am-1pm, but you can get in touch whenever you want and leave a message and they say they will get back to you within one working day. The other thing I have found is, for me, it is important to have honest, open communication and to try and do all those things you have promised yourself you would do and spoil yourselves. Oh, and keep posting.
3 Likes
Good morning Sandrine. Twelve years ago I had agressive relapsing Hodgkins Lymphoma which was eventually seen off with a stem cell transplant and radiotherapy. Unfortunately I do not have any knowledge of the further complications you are faced with. My friend, Erica, has given very good advice about contacting the support line, and there may be information on the Bloodwise website too, although each patient is unique, and responds in different ways.
I hope you have some support from a Clinical Nurse Specialist at the hospital. Do ask what help (emotional and financial, as well as physical) is available to you both. You probably feel as if you have been hit with a thunderbolt, and feel like hunkering down, but dealing with practicalities can sometimes help.
I would also agree with Erica’s final comment about not forgetting to do some of the things you would both enjoy, and most importantly, look after yourself too.
3 Likes
Hi Sandrine, I am so sorry to hear of your husbands recent diagnosis and the news you have both been given. I can imagine this has been incredibly challenging for you both. How are you doing? As Erica and Louise have mentioned, please do reach out to our support services if you would like support at all, we are here for anyone affected by cancer. Please do take care of yourself, and let us know how we can support you.
3 Likes
Thank you for your messages … I did forget I about this post!!!
We are in 1st cycle of chemo for his burket lymphoma and have a meeting mid January with the MDS consultant. Fingers crossed xxx
2 Likes
Hi Sandrine, I expect you forgot about this post as you have both got so much going on with your husbands medical appointments and just trying to keep everything else ticking over. You must be emotionally and physically worn out. It must be so wearing being the carer. Take care of yourselves and keep posting, we are all here to support you both and don’t forget the Bloodwise support line, I gave you the details above, is there if you need it.
1 Like