My husband's DLBCL

Hi Hibbie, I'm at the same stage as your husband, just had the 3rd chemo session on Tuesday, and so far it seems to be on track. I don't know what I'd do without the love and support of my wife, Dorothy, my soulmate for the last 44 years. I know its very hard for her, trying to live a normal life while constantly wondering where it might end, but she copes really well, even when my mood swings make things more than difficult. Dorothy organises my medication for me, including the daily injections of clexane, records and manages my appointments, blood tests, scan days, all of which tend to be organised by phone, and with my brain fog I just can't cope with keeping track of it.

The lymphoma caused me to break my left arm, which means I can't drive, so Dorothy has to take me to all my appointments, only to be told she cant come in with me on most occasions so has to go lurk in the car park or coffee shop for hours on end.

Carers have a tough row to hoe. All you can do is take it one day at a time, and have faith that the treatment does what it says on the tin and before too long your husband will come out to the other side. Don't think your love and support is unappreciated...the man you love might not say it, but I'm sure he understands how difficult it can be.

Better times a'coming...you'll see

Steve

Hi Hubbie,

You sound just like I was a year ago. In fact your letter could be a copy. Well here we are nearly a year after my husband's 6 rounds of r chop and 15 sessions if radiotherapy. His Lymphoma was on his lung. Last scan 2 months ago was declared clear. I won't say he is back to normal but maybe 75%. He gets down times when he just doesn't feel right but on the whole we are back to our normal lives. We have had a few holidays, in this country I might add. 

So hang on in there. It isn't easy and like you, I did all the worrying and he took it in his stride. He is still having 3 monthly check ups. We still have our fingers crossed for no return.

Good luck with it all. 

Hi Steve thank you for you message, I'm just having a bad day, I know that George really appreciates and loves me,  yes better times a'coming for you both

Thank you so much for your message, I'm so glad I'm not turning into a basket case, I felt so down today I even shouted at our dog the look on her little face was something to behold, to be honest I know that the outlook for DLBCL is good so just try not to worry, he is the one consoling me instead of the other way around, good luck to you both 

Hi again Hibbie, I highlighted your feelings to my long suffering wife Fiona and asked her for her thoughts……

”I totally understand where you are at, at times it’s all so overwhelming and the pressure we put ourselves under to ‘be strong’ is at times debilitating….. we tend to be so hard on ourselves to be strong and end up making things just more harder.

Keep life simple, take each day as it comes, celebrate the good days and when there is a not so good day…… tomorrow will be one.

Mike will never hear the words cure as his type of Lymphoma is incurable but my understanding is your husbands type is curable……believe it and hold onto it.

I was so happy back in Sep 2016 when he came home from hospital and said that he was in full remission (and still is)….. up until then we had been and ever repeating round of treatment then freedom for 9 months and back then on treatment.

Over his 23 years we have had some very dark days, you can see this in his profile (yes I have read it and still can’t believe we came through it all) but ‘we’ never lost sight of the greater good in all this and regardless how challenging things become we always believed that this would turn out ok.

Mike is well over six years out from his last treatment and doing great, yes we have still had some bumps in the road but we are living as normal a life that any 60 something years old couple can live - trust the treatment look for a good outcome”…… Mrs Highlander ((hugs))

I do hope Fiona’s words are a help.

Hi

i was diagnosed in April with a mixture of large B cell and follicular. It was extensive throughout my abdomen from my neck to my groin. I had my half way scan two weeks ago and no sign of disease. m on 6 cycles of R Chop. Had my 4th yesterday and apart from developing a cold and cough today, my reaction to the chemo has bend the same as the first 3. Hair loss after first treatment of course  but it hasn’t been as bad as expected. I know it is responsive to treatment as I have two friends who were treated 25 years ago with no return and one treated 2 years ago with no return. I know also there are non curable types but this isn’t one of them so just have to be on the hopeful side. 
x

Hi Hibbie, my approach was very much the same as your husbands, however we all know and understand the role of the carer is much harder, so having off days is ok and bitting back at folks is understandable, I did it several times at work post treatment when things had not gone to plan and the big boss was not happy. But there is always a bigger picture and sometime we all struggle to see it. To help for the future be reassured there is life after treatment and for us DLBC people there is now cure!

I know when I had treatment my specialist nurse always checked in with my wife to ensure she was ok and to let her know she was there for her, are you able to talk to his CSN? if not and you feel the need to chat you can call the helpline here at Mac or at the charity set up for lymphoma patients called Lymphoma Action https://lymphoma-action.org.uk/index.php/support-you

Remember you are never alone on this journey

John 

Hi John thank you for your support, yes we have a CSN she always makes time too talk is both to make sure we are ok. He is due his half way scan next week, so hopefully we get good news. Will keep you updated

Hibbie