18 months ago I had no idea what Lymphoma was, now I have lost my dear mum to this cancer. She put up such a fight but in the end it won. She had NHL diffuse large cell b, and a very aggressive form. She located a lump at the end of 2010 under her arm, and was diagnosed early 2011. She started R-CHOP for 9 cycles and appeared clear at the end of them. In Nov last year she had heart failure due to the R of the chop and we nearly lost her then but she pulled through. In March 2012 she noticed niggles but Dr put them down to everythig but Lymphoma, in April she had an appointment with the heart specialist about her recovery and he discovered a small lump under her arm. By June we knew Lymphoma was back. They tried steroids and radiotherapy but the lump continued to grow. There was talk of a different chemo regime as she could not have the R-chop again. Delays occurred as our council would not fund the drugs. Early July she was admitted as she was so ill. The doctors told us to accept that this was the end. My dad pushed for treatment and they gave a reduced dose of CHOP. She responded quite well, so they decided to give IVE and talked of two cycles maybe three then possible stem cell transplant. Day 3 after IVE she went downhill and barely spoke another word until she passed away on Saturday 8/9. I will miss her greatly and my children will miss knowing their nanna as they grow up. I know when I did not understand what was happening with her I trolled the Internet for information, so wanted to write this so others know her journey. To anyone out there with the disease I wish you well with your journey, and to anyone who has lost a loved one my heart goes out to you as I now know the full effects of loss.
I Am so sorry to read of your loss, My heart goes out to you, we have been speaking in another topic as my husband has aggressive non hodgkins diffuse large b-cell and has relapsed. you are a special person to find time to comfort me and also be going through such an emotional time yourself. i have just replied to the other topic before reading this one and am so sorry for your loss xxx
Am so sorry to read of your loss, My heart goes out to you, we have been speaking in another topic as my husband has aggressive non hodgkins diffuse large b-cell and has relapsed. you are a special person to find time to comfort me and also be going through such an emotional time yourself. i have just replied to the other topic before reading this one and am so sorry for your loss xxx
I just replied to your other post, thanks for your lovely words! X
Hi Nixi, my heart goes out you for your loss. 2 years ago my partner ,who id only been with for 1 year before,was diagnosed with follicular Lymphoma.He had 6 round of rchop and then rituxan maintenace therapy for supposedly 1 year but 5 months later he was itching all over again and we knew it was the lymphoma.The consultant said it had turned to high grade and the treatment would be IVE then BEAM followed by auto stem cell transplant,I was terrified of this treatment but he seemed to cope with it all pretty well compared to some. We honestly thought that he would now be ok and we made so many plans for the future ,one of which was to get married. 2 months after the stem cell transplant he started itching again and told the consultant who refused to believe it was the Lymphoma,and told us it was due to the medication he was taking.He was wrong. The lymphoma was back with a vengeance and we were then told the only option left would be radiotherapy. So once again, back to the hospital to fight on. Following the radiotherapy, my partner had to have a routine ultrasound scan because he had a kidney stent and was due to have it replaced,they discovered that the lymphoma had spread to his liver and we were told that there was no more they can do.Devastated!!! the consultant gave him 3 to 6 months.Although he was extremely tired and weak we thought that was caused by the radiotherapy,but the following day after he had been told 3 to 6 months, he suffered severe pain and i had to call an ambulance…diagnoses,perforated bowel caused by the lyphoma.He died the next day and suffered terribly with pain.It wasnt the peaceful end that I had expected. He was 61 and i am 46 and all my life I waited to find someone who I truly loved and when i did, he was taken from me by this evil disease. we hardly built any nice memories as most of our time together was treatment and more treatment etc. How that I will get over this I do not know.but, i do thnink about all the other people out there going through the same nightmare and i wish them hope, strength and lots of luck .
I am so sorry for your loss. What a time of it you had. You know your story has helped greatly. We had so many questions and so many what ifs. Mum was given the IVE and was due if it all went well to have the stem cell transplant. We kept thinking if only they had got on with treatment sooner she might have been strong enough and might have lived longer or even been well again for a while. But perhaps once it becomes so high grade there is not much you can do. The drs did say if you looked at the cells through a microscope as it was so high grade you would probably see them dividing and growing! We were lucky that mum did not suffer in her last weeks, she just spent most of it sleeping and not really being aware of what was going on. She died quietly on her own when my dad went to eat. Although she was unwell it was still such a shock as with treatment she was supposed to get better. I can’t imagine how you get through your days, mine are getting easier, I used to go to bed crying and wake up the same way but that does not happen anymore. Sometimes though from no where I am overcome with grief, people say it will get easier and no doubt it will, but I will always miss mum. I hope you can find the strength you need to get you through your days. Thank you for sharing your story with me, and any others that may read it, I am sure forums like this help us all in our times of need.
Thankyou for you response to my post, im so glad that my story helps in some way,its so comforting to talk to someone who has experienced similar to me. Im so sorry that you lost your mum to this horrible disease, it must be very hard for you. I too have lots of what ifs and questions going around in my head that I need answers to but I know some of them will never be answered. its only been 2 weeks since mel died and weds is the funeral so im still at a stage of disbelief at the moment and wandering how life can go on without him. I dont know what to say at the moment except thankyou also, for sharing your story.
For us once the funeral was over we crashed. There was so much to do, so much to think of trying to organise a funeral, we sat up until late into the night choosing music, the clothes she would wear etc, etc. For a wedding you have months, for a funeral you have days. We wanted to do mum proud and although she did not see it, she would have been. I did not know how I would get through the day but I did, perhaps for me having to help support my dad gave me the strength I needed. However afterwards life was empty. Obviously loosing a partner is on a different level. The questions have not stopped, perhaps they never will, although there is little point as we can’t change what happened, but I guess it is human nature, we need answers! If we had our time again, we would certainly approach things in a different manner and ask different questions, perhaps being a part of this forum and speaking to people can help to inform and maybe prepare them?
I hope that you find the strength you need to see you through Wednesday, and the days that follow, all I can say is when I felt at my lowest I knew my mum would not want me to feel that way, and whilst it did not (does not) stop the tears, I can pick myself up and carry on.
My heart goes out to you x.
ive just lost my mum to complications of chemotherapy which was totally unexpected… but to all of us losing loved ones and mums the thoughts that are keeping me going is that, she fought so bravely to stay with us, she will help me get through this as she is with me all the time now as I see it!! keep strong for the lost ones peeps xxxx hugs too all
Hi Vetty, just wanted to send you hugs. My mums fight was lost due to chemo complications too, which makes it a shock as they are supposed to get better. I miss mum terribly, but it is getting easier with time, she is always with me, and always will be. Stay strong xxx
nixi! if you would like a more in depth chat,let me no and I will give u details for contact on Skype or something… thamks for hugs xx
Thanks for the offer Vetty. I am currently in Brisbane, Australia, so on a different time scale to the UK. Where abouts in the UK are you? If you feel like sending a private message my email is email@example.com. Hope things are settling down a bit for you and you are coping ok. Xx