Feeling the carer burden already ‍

Hi TC89 

I know at times I have found the carer role really difficult and have seen many times on here the importance of being able to look after ourselves if we are to be any real use to those we love. Looking at your feelings when someone has cancer I found quite helpful in being able to recognize my own emotions and accept them as normal and valid. 

Our initial journey has been tricky but with the second chemo my wife had her cancer became stable and has been that way for over 10 years now. 

<<hugs>>

Steve

I’m also becoming a carer for the first time for my mum who is was also a very active person, rambling around the Northumbrian hills until November when she started treatment for non-Hodgkin lymphoma. In March we were told it had spread to her brain and since then she has had many other different sorts of palliative treatment and yet still it has spread to around her kidney and spine. She has only in the last 3weeks been experiencing pain and it has been a whole new chapter of our cancer/carer journey.

I have such a huge respect for carers especially ones like yourself who also have families and full time jobs. I am freelance and am not able to have children so don’t have those balls to juggle and I still find my mother frustrating at times. Not because she isn’t staying positive but at the moment it is because she is refusing to follow advice on taking pain relief and wanting to try to do it her own way which is causing her pain and meaning she is more bed bound and tired. She is also not eating enough to then have energy to move etc.

My father died of cancer 5yrs ago very quickly and for a very short time my mother was his carer and she said ‘was not good at it’. She got so frustrated with him not eating and not staying positive. She found it selfish. I was the one having to mediate this and try to get her to see it from his point of view and also make her see she was a good carer but she was also a wife losing her husband. Now she is doing the same things and I feel I have stepped into what her role was with my father. 

It’s a horrid feeling and I completely relate but I think it’s a normal part of the transition to being a carer and is allowed and valid and doesn’t mean you don’t care or aren’t doing it well. 

I don’t know if your mum likes pottering around supermarkets but that has been how I’ve been able to get mum out of the house to move about and it can feel productive. Gardening has been a huge part of my mums life and so encouraging her to get out there has been a great way of getting some activity in (she’ll usually be prompted to do it when I get in there and start doing things not how she’d want it doing so comes out to correct me/do it herself).

Is there a place near by that meant something to you both when you were younger? My mums 72 birthday was last month and she said she didn’t want to do anything but I booked in to a stately home garden we used to go to as kids. She was very negative about going out at first but when there loved it and by the end of the day thanked me for it. my mum hates being out of control and being told what to do but sometimes that little push is what she needs and if it’s about doing something nice together rather than ‘you need to do this for your health’ it can take the cancer element out of it for even a briefest of moments.

I hope that you’re able to maybe find something to do in the summer holidays together with the kids to help her get out a little more.

Sending hugs and positive vibes. 

Hi src60 

thankyou so much for getting back to me  it’s nice to connect with other people on here. So sorry to hear about your mum and her illness. It’s been a real eye opener this experience and finding out how many people are going through it. I totally understand what you are saying in terms of your mum being reluctant to take pain relief and eat enough, my mum is equally the same… pain relief is a last resort for her and it’s been a juggle trying to explain to her that there’s nothing wrong with using it when you need to. 

how have you found having your mum on a palliative pathway in terms of treatment? We met with my mums medical oncologist yesterday. She was fantastic I have to say. She’s told us that mum is having three rounds of platinum based chemo before considering surgery; because of where the cancer has spread, it’s unlikely they would be able to remove all of the cancer in surgery so they’re going to see what chemo can accomplish. Mum and I have been having the conversations about her not having surgery and just remaining on chemo/ oral treatment to try hold it at bay for as long as possible. She’s not keen on having invasive surgery if it means all the cancer won’t be removed. What does your mum have in terms of treatment? If you don’t mind me asking.

returning the hugs, and thankyou for your support xx

Thanks for your kind words. I agree, it can feel very lonely and everyone’s experience and story is different but there are so many things we can gain from each other.

I‘m sat in her hospital room now having just been told she is going to be discharged and we’ll be caring for her from home so in the middle of working out how we can get her comfortable back in her old surroundings. I’m pleased she’ll be around her things again but also don’t feel she is in top of her pain relief so not looking forward to dealing with that back home.

She is quite far advanced I think in the palliative journey. She had lymphoma around her lungs and her neck and was told with 6 rounds of intravenous chemo (pola- R-CHP) over 6 months it could be curable but obviously no promises but as she was fit and organs all worked perfectly it was possible even considering being 71yrs old. She got to the week before her 6th round and was getting terrible migraines and for a week she couldn’t really lift her head or function. On the day of her final treatment the consultant saw her and said they wouldn’t give this final round and she should be admitted and have MRI, spinal tap etc. Findings showed it had spread to her brain which is inoperable and now we were talking about palliative treatment. That was beginning of march. 

They offered her an antibody treatments (methotrexate and rituximab) to try to treat the brain which didn’t work and had some nasty side effects and the lung one has grew back to the size it was before chemo. We thought that would be the end of the journey but the oncologists offered some antibody treatment (tepkinley) to try to treat the lung one. That was every week for 13weeks through an PiCC line she had interred and seemed to be going well. They did a scan which showed it had spread to next to her kidney but she said she’d not had any pain or issues there and she was still getting about so they continued the treatment a couple more times. But then she got pain after the last treatment a couple of weeks ago and we’ve been in the hospital managing the pain. 

I really thought that would be it but the  oncologists suggested another antibody treatment which they started on Saturday which she’ll get again in 21days, so we will see. I’m not holding out any hopes of it giving her much more time but hopefully more comfortable time if it can control it a little. 

I’d say the oncologists have all been brilliant and really feel like they know and understand my mam. It always feels like it’s in her hands. They’ve been upfront with her and she with them. Surgery has never been an option for her because of the type of cancer, where it is and maybe her age but because her organs have stayed healthy throughout and she is strong she’s managed to deal with the treatment well. I think my mums attitude is ‘I’ll take anything you throw at me or offer me’. They also say ‘you don’t have to do any of this if you don’t want to.’ She’s always just thought about the quality of life she could have. 

The chemo started well. She felt strong and she even said ‘excited’ to be starting it as it meant something was happening to help her. The half way point and beyond was really hard as she was sick of food tasting crap and being tired and nausea but she got used to the routine and what to expect and when. Chemo is very hard work and it gets harder but there is a pattern to it which can be reassuring.She has found being on the steroids that has accompanied the treatment the hardest to deal with the side effects.  Hers was not a platinum based chemo. My father did have that for his pancreatic cancer. 

I can imagine why she wouldn’t want to go through more surgery after she has had so much already. I can’t imagine how scary that must be for you all. Is there is the option of trying the chemo and then seeing where you are after 3 months as to if she has the surgery or just carries on with chemo? Sometimes it so hard thinking about the next day let alone the next 3months that maybe that would help with her focusing on the now and putting energy into that? And also she might not know she will feel about surgery in 3months time.

My uncle has pancreatic cancer and had chemo to shrink the cancer before having whipple surgery to remove as much as they could of it and he has a good quality of life now after lots of times in and out of hospital. He is in his late 70s. My friend, also 72, is half way through her chemo to do the same. 

Sorry, that feels like I’ve just written out my life story in a message! I don’t know if knowing any of that stuff helps. I suppose just showing how different everyone’s experience is and it’s so personal the choices.

Mum has found some mindfulness and visualisation tools really helpful (she is not normally that sort of person) in regards to her mental health and positivity. 

Let me know if have any other questions. Sometimes it’s just good to chat and get it all down, I know. 
xx

Hi TC89 

While they found cancer in my mum on autopsy that was not what she died from. It is my wife who has cancer now, Leiomyosarcoma. Her first chemo was doxrubicin and unfortunatly that had to be stopped half way through treatment due to being perhaps a bit too keen and she had a lung collapse - still that was fixable and later she had gemcatabine and that managed to render her cancer stable and it has remained that way for about 10 years now. She also takes letrozole as it is thought the cancer is hormone sensitive and the surgeon left an ovary when she had her hysterectomy. Nowadays it would be hard for anyone to know there is anything up with her and she just has an annual check up with the oncology team. 

<<hugs>>

Steve