Feeling overwhelmed

Hi ZLS 

I am not a carer but I noticed you haven’t had a response. I am someone with stage 4 breast cancer who has been through months of chemotherapy, immunotherapy and multiple surgeries for my own cancer. I know it’s hard for partners and was very conscious of how my husband was feeling when all the focus was on me. I think you have to make time for yourself. Find a way of having some time one evening or at the weekend when you do what you want to do. Make some plans for the times when things are a bit easier. For example, if she is on treatment that happens every 3 weeks, the 3rd week will be fairly normal. Consider going away for the weekend, or to the theatre or cinema. It’s a six month block of your lives and hopefully things will return closer to normal once she is through treatment. 

Thanks so much for getting back to me. I know I need to start doing things that will help me to stay positive and happy. I’m not sure how I get past the feeling of guilt that I can and she can’t. I’m struggling with not wanting to leave her alone at home whilst o go off and do things. She assures me it’s fine, it’s just something I need to help myself get over. Some ready good suggestions of things to do. Just a quick one on that, her oncology specialist nurse advised against things like theatre, restaurants and cinemas etc to do immune systems being weakened. Is that something you have experience of? 

Hi ZLS 

If she’s been advised against certain activities then it’s important to listen to that. Chemo drugs do reduce white blood cells, making it harder to fight off infections. As the patient, I always found it was a balancing act between keeping myself safe, and not being so restricted that I went stir crazy. I got the oncologist to help me understand when and how my blood counts would likely be affected so I could avoid busy places during the times of highest risk. I continued aqua classes in a small private pool. I did go to the theatre a couple of times wearing an FFP3 mask but didn’t use public transport to get there. I also went to restaurants but it was peak summer, so easy to choose somewhere where I could be outside.

In terms of going off to do things without her, if she assures you she is fine, she probably means it. I did feel a bit smothered by people and actually wanted some space. I wanted people to treat me as normally as possible, not wrap me in cotton wool. 

Caring is absolutely exhausting both emotionally and physically so I'm not surprised you are feeling despondent and tired. I don't do anywhere near as much as I used to but caring for someone with cancer is shattering. Don't feel guilty as that is draining as well. Acknowledge that you may be suffering from fatigue and seek help from HR. Ask for help. 

Hi ZLS. I've been in a similar situation for a long time. Things have taken a turn for the worse since her cancer became incurable. But you do eventually find a way to live, even if it is different to how it was previously. 

If you feel like a cry, do it. It can help. I don't so much now but for a long time was quite despondent, only ever thinking of her demise. But I have educated myself to the point where I feel like I'm disrespecting her if she sees me constantly unhappy and wasting my life worrying about her when she is desperately clinging to life. So I now do try to do things for myself when I can. Even a walk helps! I also found the breathing meditation helped for a while but fell out of step with it. I will start that again soon. Hoping you can find that point soon, for both your sakes.

Best wishes.

Thanks so much for reaching out. I went out this afternoon to do something for myself. I felt guilty initially because it was something 4 weeks ago we would have done together. I still felt bad but I returned home feeling a tiny bit more like myself pre all of this becoming so consuming. I am starting to learn that the pattern of chemo means we will have 7/8 days where she can do very little and it is very intense for me, so if I’m not going to struggle like I have been, I need to take advantage of the better days where the level of need and care is slightly less. 
We will try to do a few simple things together in the evenings next week before chemo again on Friday. She is saying she is starting to feel bored and I don’t want her to feel isolated, so trying things that are physically manageable for her. She has lost all of her hair now and I think her reluctance to go out at the moment is linked to feeling very self conscious about how she looks. I understand no matter how many times I say something reassuring or give a compliment, that’s not how she is feeling about herself at the moment. Still lots to navigate and a long way to go but with people’s kind words and shared experiences, it’s helping me to understand how to manage this some days. 

That's it. As you say, you take what you can - some days are better than others. But glad you've taken a short amount of time for you. My partner lost her hair on one type of chemo too - she eventually went out with a wig. She hated it but it actually looked ok. They are subsided so quite expensive ones were quite affordable and it gave her just enough confidence to go out in days she was well enough. 

It’s so hard to see them have to face these struggles virtually on a daily basis at times. My wife had to stop HRT prior to treatment so she is not only dealing with chemo but having hot flushes etc. she has two soft caps which she has tried on and will wear initially. We have talked about getting her a wig but at the moment she is not keen as she feels hot all the time. Perhaps when it cools down a bit more, she may feel differently and want something for towards the end of chemo when we can go out a bit more but the hair will take several months to grow back. I am learning that planting the seed of ideas is best and then stepping back and just saying let me know if you want me to arrange something if and when you decide you want to. 

I feel your pain.  It is so stressful.  Ive always managed all the finances, but everything on top ... we are an hour away from treatment, first time went too and spent all day in the car park.  There was no where for family members to stay comfortably.  Thankfully the oncologist says he can drive, so on chemo day I have a break.

Keep safe

We are thankfully lucky in that sense that we are 15 mins away from the hospital. I am not allowed to be in with her whilst she has her infusions but I can wait in the waiting/family area. There is a lovely little garden area that I prefer as I’m quite mindful of not being around others for prolonged periods of time. The first time I left her there for treatment I popped home to get her some bits she left and I cried the whole way home because I knew how scared she was and I could not do anything to make it better. I do wish they would rethink this policy for the first treatment as it is traumatic but I get they have to be consistent. On the second one I actually left her there, went food shopping and then went back for her after I had run a few errands that I knew I would not get done over the weekend. It gave me a chance to feel like I was doing something normal and being a little proactive with my time. I got a coffee and a snuck a few goodies in from M&S that I knew she would like when she felt able to enjoy them. It’s all about the small wins