Hello again @Rosevin4, I just wanted to pop in to say how I was really struck by your description of feeling angry about the randomness of this sort of thing. I really empathise!
You describe it so well, and you know I’ve come to think of the anger I feel about living with Polycythaemia vera ('PV') as part of a sort of rolling grief, not selfishness. For me it’s like those 5 stages of grief we hear about, but they never quite end. It doesn’t resolve, but its waves become more tolerable I’d say.
And may I say, I really appreciate your support of others here in this thread. Self-care is never selfish, I’d say. If you ever need support just for you, don’t forget Maggie’s are great to pop into, if there’s one nearby or in passing. The Blood Cancer UK nurses are there of you too @Rosevin4, they can be called free on 0808 2080 888.
Hi @Rosevin4, so sorry for the delay in getting back to you. My partner and I are finally home.
I really appreciate you responding to my messages. Would you be happy to chat in a private thread? I’m not sure how to set those up but would be really good to speak with you if you were happy to chat to me. Let me know, absolutely no worries if not.
Hi there. Wow reading your husbands story is like reading my son’s! My son had intussusception aswell. Thank goodness because I fear the cancer would have gone undetected without it. I am sorry to hear that you are going through this too
Hi Lina, thanks for thinking of us. We have had a journey with the hospital! From wrong meds given causing a chemo hold, and important chemo meds forgotten so extra visits needed. Ahh been a fun time.
I just spent a week with both boy, it was the perfect timing as he became neutropenic. His platelets also hit 5 so needed a platelet transfusion and will most likely have a blood transfusion in the coming weeks.
He is handling all this so well. He goes back into hospital today to begin cycle 3.
How are you? And your husband? From memory he is finished now. Hope he is starting to feel more like himself.
@Sam87 I thought the exact same thing when reading your posts!!
My partner was literally in pains for weeks and kept getting turned away at A&E, was told it was gallstones (they only ever did an ultrasound, never a CT and there were a few little gallstones which we probably all have!! And I couldn’t understand how that was creating so much pain). It then all came to a head the week leading up to his surgery where he couldn’t eat or drink anything, he was vomiting (but it wasn’t vomit shall we say due to the blockage ) was a total whirlwind from surgery to diagnosis it still doesn’t feel real to me.
I also wonder what on earth would have happened if the blockage hadn’t happened and how long it would have been before he was diagnosed. I still have a lot of questions about how it all happened and how quickly but I guess I’ll never know those answers. Had your son’s spread anywhere else? Or isolated to the area that was operated on? I hope you don’t mind me asking. I only ask this as we were told, following the initial scans following surgery, that my partner’s hadn’t spread to any other areas, which was obviously amazing and we’ve been telling ourselves it was caught so early but we’ve never been told what stage it was, and when I asked a consultant she gave me a very cryptic answer where she said it could be considered stage 1/2 (or 1/2E??) given it was only one side of the diaphragm (which I’d done a lot of research into) or that could be considered stage 4 given that it had spread from the lymph node into the intestine. So that massively confused me. But maybe I wasn’t taking in the information correctly and I’ve picked it up wrong given it was right in the beginning and everything felt uncertain and scary. I just wondered if you knew more about that seeing as our loved ones seem to be so similar!
I really hope you’re holding up ok. It’s just horrific and everything feels scary, but baby steps!! One day at a time. And I am here if you have any questions or just want to talk. We are home now, following all 4 cycles and just waiting for the scan at the end of sept. Trying to just focus on enjoying the little things and recovering but this is a real tough period too. Just praying that we’ve got rid of this horrific disease and we never see or hear of it again!!
So nice to hear from you, but so sorry to hear about the meds mistakes I really hope they sorted themselves out and the next 2 cycles will be ok. Sadly the low neutrophils, platelets, Hgb is a “normal”/expected occurrence which can be so scary, but that’s why they are in hospital and are monitored so closely so they hopefully get the platelet/bloods transfusion and iv AB asap.
My husband had about 6 or 7 blood transfusions, and 2 platelet transfusions. And the last transfusions happened the day he left home
He has been home since the 28th July and he’s been well so far, no weird things We are waiting for his scan next week and hope for the bestPhysically he is getting stronger everyday, and is doing everything he did before, even swimming and cycling slowly. His hair is growing back, but he lost his eyebrows and eyelashes since coming home, which seems to be a delayed effect that is also expected.
Praying for a smooth journey ahead of you, you’re half way there! Just hang in there and stay strong.
I think the cycles are different here in Australia. He has about 8 to do, just got admitted to begin cycles 3 tonight. Almost half way.
So glad to hear your husband is feeling quite well, super impressed to hear he is getting back into it. Also, this news will make my boy happy, he keeps talking about how soon he can get his fitness back.
Oh I had no idea you have a different schedule, 8 sounds like a lot… But hopefully shorter then athe 4 we had.
Where is he staying between the cycles, you mentioned of possible a flat where he can stay and not the hospital.
By the end of cycle 4 my husband was wiped out, especially after cycle 3 IVAC-R, he had extreme fatigue. Then, since coming home, he’s be slowly and gradually getting stronger. He really wants to do too much, so I have to stop him a bit bc his body is still recovering, but it’s probably going to be a bit harder for a 19yo! So good luck restraining him when he gets to that point!
He stays in a unit 3 mins from the hospital. Because we live 2 hrs away he will stay there for 6 months. I finally have the list of chemo medication, I think you asked me a few weeks ago.
vinCRISTine
CYCLOPHOSPHamide
cytarabine
DOXOrubicin
mesna
methotrexate
methotrexate
methotrexate
rituximab
He gets admitted for 5 days for some and others are day visits. Through his pic line and some into his spine.
I believe they are using the same drugs but different timings probably. To be honest I kind of blocked it now, I barely remember what he had and when, I would need to look back at all the messages between us
But the schedule here is
1. Codox-M - R is : Cyclophosphamide, vincristine (Oncovin), doxorubicin, high-dose methotrexate and rituximab. Plus the cytarabine and methotrexate intratechals. (15-16 days)
Ivac R - Ifosfamide, etoposide, and high-dose cytarabine, mesna, rituximab, methotrexate. Plus the intratechals. (7-8 days).
And then you repeat cycle 1 and 2.
I don’t know how much the order matters, as long as it works !
I don’t blame you, I can’t wait to forget all this.
I am really down about it all tonight actually. I’ve had plenty of emotional breakdowns but tonight I just feel so sorry for our family. Putting the cancer and those fears aside, it is just so hard living hours apart. I feel guilty not being with my son, and guilty when I am not with my daughters. Somewhere in the mix of all the guilt is sadness because I miss my husband and our partnership.
Sorry had to get that out. Tomorrow will be a better day I am sure.
Talk soon xx
) was a total whirlwind from surgery to diagnosis it still doesn’t feel real to me.
I really hope they sorted themselves out and the next 2 cycles will be ok. Sadly the low neutrophils, platelets, Hgb is a “normal”/expected occurrence which can be so scary, but that’s why they are in hospital and are monitored so closely so they hopefully get the platelet/bloods transfusion and iv AB asap.
We are waiting for his scan next week and hope for the best