My lovely Mum has had Lymphoma for ten years with several recurrences along with many skin cancers. Some months ago she started to lose weight and I urged her to request a scan which was declined by her Consultant because "there is no evidence that the Lymphoma has recurred". Her bloods were fine, her palpations were normal, but I knew it was back. She refused to listen because "the Drs know best". Then her bloods showed evidence of low sodium and they wanted to do another gastrostomy. The last gastrostomy ended up with her having a massive hemorrhage in her stomach and spending 12 weeks in critical care after a spelenectomy and mesh in her stomach and a DNR which was later removed. She refused another gastrostomy after I informed her that she did not have to agree, but requested a scan which showed that the Lymphoma is back in her stomach and chest. She is now on her second of 6 courses of much stronger chemo, her hair is falling out, she has spent the last 2 days in bed which really isnt like Mum at all. She is 80 and has been advised that her age is now no longer on her side and she is really poorly today. My Dad is 83 and has been fine up until today, but is really struggling tonight (he hasnt said but I can tell). I think that she is approaching end of life, but cannot discuss this, because they think that it is just the chemo and that it is going to make her more well. I have been visiting as often as I can, cooking meals for the freezer but they are refusing additional help right now although Mum has finally allowed me to apply for AA and a Blue Badge. I do not feel that she is going to cope with the next 4 courses of chemo. I really dont know what to do, or what to say to Mum or Dad. I am not sleeping and constantly waiting for a phone call in the middle of the night to say that she is really unwell or has passed and am sure that neither of them are sleeping well either. I really want to speak to her consultant but am unsure if I still have consent, I spoke to her old consultant when the DNR was in place who told me that the Lymphoma was extremely widespread. Even if I was allowed to speak to them, I know that the information would not be positive. I can visit, I can cook food for both of them or just Dad, I can help with housework and transport to hospiral visits, I can be empathic, I can listen and be supportive, but nothing feels quite enough right now.
Hi and a welcome to the Online Community but so sorry to hear about your mum’s journey.
A cancer journey like this in the family can be such a challenging and stressful time but I do hope you will find the Community a safe place to get support from family members who are navigating the same journey.
I have lived and been treated for a rare type of Lymphoma for over 23 years now and although it is all stable at the moment I am fully aware that things can go wrong any time resulting in further challenges
I am so sorry to read about the problems your mum and all the family have had deal with…… at this time it would be good for you to connect with others who are navigating the same support challenges.
The Community is divided into support groups (discussion rooms) so can I recommend you join and post in our general Carers only and Supporting someone with incurable cancer support groups where you will connect with others dealing with the same day to day challenges while supporting family.
If you'd like to connect in with a group click on the Green (Bold) link I have created above. Once the group page opens click on the black banner that says [click to join] at the bottom, or the [Join] button under "Group tools."
You can then introduce yourself by putting up a ‘new post’ by clicking in the box near the top right with + New or + (Depending on the device you are using) and you are ready to go. You could copy and paste the text from this post into your new post.
The Macmillan Support Line is open from 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00 where you can talk with someone about specific cancer and practical information, get emotional support, benefits/financial guidance or just connect with a listening ear.
We also have our Ask an Expert section but do allow a few working days for a reply.
Talking to people face to face can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing and aim to give support to all the family.
Please do get back to me if you need further help ((hugs))
