Hello

So sorry to hear about your current situation with your mother. Is there any particular reason why it is not going to be treated?

I have Hodgkin's lymphoma stage 3 and the treatment is doing its job on the cancer.  I am 27 so a very different time if life to your mum.

Again I'm so sorry to hear about her situation.

Sending you best wishes

Rose

Rose

Thank you for the reply.  She is in pain with her Fibro and ongoing issues with her disabilty on her spinal operation from years ago.  The literature my mum has from the hospital my wife read and I breifly read, it stated that Chemo and the other treatments are not a cure and only prolong life for an average of 8-10 more years. 

My mum's decision timeline is tomorrow, and hopefully the doctors and medical teams can give her the information to change her mind.  

The thought of the side effects seem to outweigh the reality.  My mum doesnt want to potentially lose her hair, feel weaker than she does already, become more prone to other illness's from occuring. 

My original statement said, am I being too selfish?

How are you coping with the Stage 3 HL?  You have many side effects?  How long is your treatment stage?  How long have to known about HL?    Sorry so many questions.  27! wow, I am so sorry to hear.  Do you have a supportive family?

Lastly, thank you for the kindest words (again).

T

Hiya

I am confused about the chemo extending life by 8-10 years however there are so many different types of lymphoma that it's possible she has a different Hodgkin's lymphoma to me - I have classical. However the chemotherapy I am on, ABVD, is administered with the intention of complete remission and cure. Of course there is no confirmation that it won't come back but my specialist told me 85% of those given the treatment will respond well and recieve total remission which is what I'm currently on route for.

Do you know what type of chemotherapy she would be taking? It might be worth speaking to her specialist about these specifics that you've read about as each person is unique and will have a different prognosis and treatment plan. 

I would really cover all bases before making such a difficult decision, make sure she gets all her questions answered.

As for your questions about being selfish, you're not being selfish at all. Everyone around a cancer patient goes through their own struggles and definitely do not feel guilty about thinking this! 

I am coping quite well with the treatment. I won't lie I have had difficulty some days with nausea and bowels, however my cancer team have been brilliant and have always managed to find a medication to help ease my side effects and make them manageable. I have chemo every two weeks and I usually have one exhausted week and then one good week of feeling much like my old self. The hard part is the rinse and repeat nature of it - knowing that though I feel better I've got to go through it again and that rough times are ahead. Mentally it is tiring but it's not the worst I imagined. It's like having a nasty hangover for a whole week then you get over it gradually.

I'm 8 doses into a 12 dose plan and am expecting to come out fully remission-ed as my interim pet scan showed I am doing really well. After that I get monitored every 3 months.

My diagnosis took a long time to get to - Feb to August where I had all sorts of tests and bone marrow biopsy and all sorts. In some ways that long period of testing and unknown was worse than the treatment!

I hope this helps in some way or other.

Best wishes to you and your family.

Rose

Rose

Thank you for the reply.  I do not know what type HL my mum has got, or the planned chemo that was offered to her, will find out more today.  She has got an appointment of the PET scan and sometime soon the annoucement to the family of the way forward she intends to go.

I really am a novice on this, I only found out Friday 22nd and only known since Tuesday her plans of not going through chemo.  Her chemo will be altered as her issues with other medications for her fibro and other medical conditions anyway.  Again I do not know for sure what she is taking before the diagnostics, as my step dad is her carer and organises that.  He has been a rock for her over the past few months, years even!

Your page, your comments and knowledge is outstanding.  You have spoken to me already in great depth and to others.  Some of the techniques you have shared over chemo sessions is remarkably precise and I will be talking to my mum about this when I hear from her later today.

I am so happy to hear your comment on the treatment is making you at least feel better and that the chance of "beating" your issues is at a high percentage of cure and prevention.  Your personality is wonderful and your mental strength is superb!

You have eased my own thought process, and I saw a friend last night who has been through the process of chemo in his own family, and I feel that this is a massive part of life in the devil that is cancer.  Something so dreadful is eased by the "family" of cancer patients such as yourself and others and sharing experience, wisdom and most importantly a ear to talk into (or to read from!) from almost a complete stranger.  My original question has already changed in my own mindset. 

Thank you very much !

T