Just thought I’d drop a message to help tell myself that we can do hard things on a day that has felt very long and hard. My husband was admitted to hospital today with neutropenic sepsis for the second time in 3 weeks and we’re a bit fed up with all of this. He finished 6 cycles of RCHOP Aug 18th and it has been one thing after another for most of it. I’m not sure how much more this lovely man can take. I’m sure he’ll come through this but worry about the toll time after time. We’re both very calm today about it but think it’s maybe numbness rather than calm. Don’t suppose that really matters.
Caring is the hardest job in the world and I’d swap places any day with him. Though I’m pretty sure id not be as brave, focused, stoic and resilient as he. I said recently to a friend that I wish I could take it from him as he has just about had enough and I think their reply was spot on and a real testament to him. They said he wouldn’t give it to me for anything. How lucky I am to have built a life with someone who’d put me first, even in this situation.
Don’t really know why I’ve posted, can’t quite switch brain off tonight and missing him at home. Onwards and upwards I suppose. Wishing everyone well as they go through their days - both good and the not so good ones
Oh @judesadventures perhaps you quite rightly posted because you wanted to feel a connection to our supportive forum that actually understands exactly where you are coming from and could all send you a great big virtual forum engulfing hug.
It was interesting what you said about being calm and/or numb, perhaps you are too exhausted to actually feel anything else. Even through the exhaustion though that brain of yours still won;t switch off. Perhaps just lying there is resting a bit.
Even through the enormity of what you are all going through you can think to ,wish us all well, that’s our @judesadventures
Loads of love and hugs to you all and you know where we are and that we are here for you all.
Please keep posting at any time of day or night xx
I am so sorry to hear that your lovely husband has been admitted to hospital with sepsis. You both must be physically and mentally exhausted. It is completely understandable that you are fed up with it all. I really hope he starts to feel better very soon.
We are glad that you have posted and shared how you are feeling. Caring is the hardest job in the world and you are doing it amazing well. Its important to also look after yourself and I hope you manage to get a little bit of respite.
If we can help or support you in any way, please do not hesitant to reach out. We are all here for you and thinking of you both. Our nursing support line is open tomorrow from 10 am until 1pm on 0808 2080 888 if it would be helpful to talk things through.
As @Fiona_BloodCancerUK quite rightly says that being the carer is the the hardest 24 + hours a day role in the world, the looker after everything keeping all those plates spinning, Carer covers so much emotionally, physically, medically and practically, like a nurse, advocate, run a home, chef, the looker after your son, chauffeur, the list is never ending.
As perhaps you would tell others you have to look after yourself in order to be able to look after others, which is so much easier said than done in practice.
Please do keep us posted and the Blood Cancer UK support services are there for you too.
@Fiona_BloodCancerUK@Erica thanks to you both for your kind words. We have had a very rough day and hubby really struggling to talk/swallow and eat as mouth in such a mess. Dr said it’s the worst outbreak they’ve ever seen which just hurts my heart. Today required my vigilance, and intervention, when barrier nursing was poor, my advocating for better pain relief, my correcting some misprescribed medicine and general eyes in the back of my head as well as domestic chores of cooking, refilling fuel In car, essential groceries, laundry, supervising newly driving teenage son, supporting a devastated teenage son and generally updating, supporting and placating loved ones. Hubby said as I left tonight that ‘this too shall pass’, something my late dad often said. I do hope so but as a friend said tonight :love gets us through’. I’ve really appreciated your support here x
I was so sorry to read your post, what an awful time for you, your husband and your sons. As both @Fiona_BloodCancerUK and @Erica have said, keep posting, talking and call if you need a chat.