Hodgkin's lymphoma symptoms questions

Hello from darkest Kent - you have been and are going through it. One of the main problems we all have is the bombardment of information and - unless you are a specialist- the inability to filter the information. If I were you I would arrange to have a meeting with the clinical nurse specialist attached to your treatment unit. They are brilliant (in my experience) because they have a lot of knowledge, time to listen and advise and, importantly, can access records and your consultant(s). Plus to them you are one of scores they have seen whereras you and I are one of one. Use 'em. Obviously I don't know your circumstances but if you can share your feelings and laughs and hugs then do so. If you do decide to see the clinical nurse specialist then, if possible, take someone with you to listen and help digest the information. Further preparation could include an email prior to the metting outlining the area(s) you want to discuss.

All the best - I am here to natter - and have a long distance hug.

Pete

Hi Introuble197700064d and warm welcome to the Macmillan Community. I am Mike and I help out around our Lymphoma groups. 

I don’t have Hodgkin's Lymphoma but for some context I was diagnosed way back in 1999 at 43 with my first type of rare Cutaneous T-Cell Non Hodgkin’s Lymphoma……. eventually reaching Stage 4a in late 2013 when a second, also rare aggressive Peripheral T-Cell Non Hodgkin’s Lymphoma was appearing.

I totally agree with Pete Tenterden ……. as much as we look at the information on line and in the books out there it’s only a medical professionals knowledge and experience that sift through everything to identify symptoms…… over my 25 years I have been checked out for various ‘issues’ that my mind related to my 2 NHLs…… these were Heart, Prostate, Stomach, Lungs, Hip. Bone….. to name a few. The reality is they had nothing to do with my Lymphoma….. but some were post treatment leftovers.

List your concerns and talk with your CNS if you have one of your Consultant.

Thank you I appreciate your response I've talked to several different dr to be perfectly honest I'm unable to work trying to get my disability benefits but I lost my license and my dr are about 35 miles away from were I live next town and I have been unable to find one in town I live so far the family and friends I have in my life have helped me as much as possible but it's been a while since I have been to cancer or heart DR the Drs released me because I had missed to many appointments but God willing I get my license back in January if I can get fine paid and jeep holds up it's been a tough old truck but thank you all God bless 

Thank you God bless 

Hi again Introuble197700064d 

I have just read the post you have put up to our Cancer Nurse Team….. I think that the reply you will get would be rather the same as you will get from me…

You do need to prioritise re-connecting with your medical professionals…. based on my experience other medical heath issues can come along so you do need to talk things through and get checked out.

I am assuming that you are in the UK…… Health Boards in the UK have patient transport available to take you to hospital appointments and there are some charities who provide transport to and from GP surgeries.

Hi Mike

The poster is based in the USA-he’s been chatting in the “awake” thread on cancer chat.

Sarah xx

Thanks Sarah SarahH21 …… this is why I always say ‘I am assuming’ or ‘if you are in the UK’…… as we just don’t initially know. 

Yes I'm actually in U.S.A. I'm trying to find a Dr close to me because of my transportation problems but I'm praying that I find a good Dr close to me but thank you very much for your response and I'm praying for all of you everyone I have talked to on here has been super cool and supportive I don't know any of but in a way I don't feel like I'm still alone thank you God bless 

Hi again Introuble197700064d I do pray that you can find some accessible medical support soon.