Hi

Your not the only one out there that knows someone that has/had nhl as my grandad has it and im here if you need to just talk about things

Hello All

Thank you for your messages , my daughter Rosemary has now had her 6th of 6 treatments of CHOP Chemo  , this Thursday she goes for a scan to see what the results of the last five months of treatment are we are hoping the mass has shrunk as it had shrunk by two thirds at half way stage ,

Rosemary then sees the consultant a week later to review where she goes from here all depending on what they find , he did say at our last meeting he would like her to have a Pet scan but as these cost £700.00 a scan he needs to have a meeting with his team first

I do worry about her as she says she's ok when we know she isn't , she's had this sore mouth problem all through her treatment it comes on after the second week each time with medication it goes better ,but during this time she eats very little , she tries to eat well when her mouth is ok but its only small meals , before she was diagnosed with NHL she weighed 8 stone she is only a small person but now she is 6 1/2 stone this does worry us and her , she has had an angry  rash around her mouth and on her chest since treatment started it goes with prescribed wash and cream , but its still prominent now with brown blotching

Rosemary seems to have lost interest it going out even just for a little walk , she manages the supermarket with us once a week and that's it ,she does not live with us she want to be in her flat with her 12 year old daughter ,but we go as often as we can to keep an eye on her ,we more often than not find her lying on the sofa asleep

Those of you who are carers of cancer patients how do you get a meeting with someone at  the hospital,on our own ,as we have various concerns, we would like to know what the prognosis is ,and see if someone can call on Rosemary and check her out at home as we think she neglects herself, and advice coming from someone else might help , she's had one visit from Macmillan nurse in five months  we worry so much about her , we don't like the colour of her skin we , her weight loss we feel she dosent take her tempeture as she should , but she tells us she does if we ask her too many questions she gets sharp and crabby with us, its hard to know what to do for the best .considering she's at the end of this 6 course treatment of chemo she looks really rough , I know the chemo knocks the patient about in many ways

Thank you for reading this if you can advise us please do, much Love to you all

Regards Brenda

Hello All

Thank you for your messages , my daughter Rosemary has now had her 6th of 6 treatments of CHOP Chemo  , this Thursday she goes for a scan to see what the results of the last five months of treatment are we are hoping the mass has shrunk as it had shrunk by two thirds at half way stage ,

Rosemary then sees the consultant a week later to review where she goes from here all depending on what they find , he did say at our last meeting he would like her to have a Pet scan but as these cost £700.00 a scan he needs to have a meeting with his team first

I do worry about her as she says she's ok when we know she isn't , she's had this sore mouth problem all through her treatment it comes on after the second week each time with medication it goes better ,but during this time she eats very little , she tries to eat well when her mouth is ok but its only small meals , before she was diagnosed with NHL she weighed 8 stone she is only a small person but now she is 6 1/2 stone this does worry us and her , she has had an angry  rash around her mouth and on her chest since treatment started it goes with prescribed wash and cream , but its still prominent now with brown blotching

Rosemary seems to have lost interest it going out even just for a little walk , she manages the supermarket with us once a week and that's it ,she does not live with us she want to be in her flat with her 12 year old daughter ,but we go as often as we can to keep an eye on her ,we more often than not find her lying on the sofa asleep

Those of you who are carers of cancer patients how do you get a meeting with someone at  the hospital,on our own ,as we have various concerns, we would like to know what the prognosis is ,and see if someone can call on Rosemary and check her out at home as we think she neglects herself, and advice coming from someone else might help , she's had one visit from Macmillan nurse in five months  we worry so much about her , we don't like the colour of her skin we , her weight loss we feel she dosent take her tempeture as she should , but she tells us she does if we ask her too many questions she gets sharp and crabby with us, its hard to know what to do for the best .considering she's at the end of this 6 course treatment of chemo she looks really rough , I know the chemo knocks the patient about in many ways

Thank you for reading this if you can advise us please do, much Love to you all

Regards Brenda

Hi Brenda

I am sorry that things are hitting your daughter so hard.I do not have experience of her illness but i had the same problem with my weight when i was sick last time.It was not that i did not want to eat but that i did not feel like i could.The other thing i would add id that i did not see being so thin as much of an issue,whereas with hindsight i can see that it was.Being objective about yourself when reality keeps slipping and sliding about is surprisingly hard.This may sound stupid but i found it useful to take photos of myself on a digital camera.I did not have to get them developed but the camera does not lie and so makes me face certain things.The foods i found i could eat were quiona mixed with a little sauce like pesto and only small amounts in one go and dark chocolate and fruit,since then i have discovered raw chocolate and protein shakes.Good luck