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Here We Go or Not

Cari67
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Hope all here are doing well as possible these days. Sheilding sucked and for those of you still shielding, I hope you're doing okay, if I could help i would definitely. My husband is the cancer patient but my fear of the supermarket became palpable. He's a GP but GPs in our area don't have badges so the supermarkets wouldn't let me us NHS hours to get him fruit and veg...then there were no delivery spots and on and on...he did okay but he was trying to work from home too.  He moved into the guest room and we had to stay six feet apart and then my dad passed away and nobody to hug me, just a husband living in the other half of the house.  Then life got something like normal...I shall explain?
To recap my story: :shocked: About a year ago I wrote about my husband who had just had surgery for T3b N0 M0 RCC (renal cell carcinoma) with a Liebovich score of 8 (out of 11) and was entering the RAMPART immunotherapy trial. The trial was to last from August 2019 to August 2020 but his last treatment was in March before they shut down treatments, especially trials including RAMPART. 
As mentioned, my husband is a GP :devil: so his knowlege is somewhat more advanced than mine and even he is confused. His tumour had a blood clot and necrosis (for some extra fun) and it had gotten hold of the adrenal gland but had not pierced the sack/sheath/ what's a callit that wraps around your kidney and adrenal gland though it was on its way to the IVC (one big boy vein) so if he'd been a typical GP and put offand ignored his worsening fatigue and minimal amount of weight loss (6lbs) for yet another month and in the words of his doctors, he would likely have been gone by the end of the year, so they say. 
He ended his shielding on 25 June and has been back at work, full steam ahead, back to leaving here at 6:45am and getting home at 8:30pm, not eating lunch, drinking enough water or taking his time - as many may know, the NHS is very short on GPs these days and the doctors feel bad about that too, trust me.  Before that during shielding, he worked from home and the laptop was shut promptly at 6pm. We have dinner togehter from opposite sides of the room for his safety, watch an hour of TV and go to our separate bedrooms. It was kind of nice to have him home despite circumstances. But now it's back to "normal" , COVID aside. 

On Tuesday of this week, his oncologist's nurse phoned him in the middle of the day to say could he start back on his infusions. RAMPART is doing immunotherapy infusions, it's not a blind study, a computer randomizes you, he got the full package. Started with two drugs infused on the same day for the first two months, then, one drug infusion the rest of the study year. He said yes to returning to the study treatments, he was still being observed and scanned but the next scan isn't until September.  Anyway, and then he got a call back. Instead of receiving the the final FIVE infusions, he'd only get July and August because HIS trial schedule was meant to end in August. Oncologist wasn't amused with RAMPART but felt it was beneficial perhaps so he agreed though not happy to just have two more infusions and end the medication part of the study in August.

TODAY after scheduling the next two infusion dates off as well as the rest of the week of the infusions off to feel yucky, he finds he's getting only ONE more infusion, on Tuesday. So running a skeleton crew (no pun) of a GP surgery with hardly any medical staff left in the UK, he's the only full time partner, he has a part time partner who cannot work most days because of childcare, and then a salaried part time GP who also has childcare issues so he wonders why am I bothering for ONE treatment? 
It's all been so hard the past few months. My husband is Scottish but I'm straight outta California (I've lived here ten years), unfortunately, my dad passed away back in America on March 23rd due to "complications related to advanced Parkinson's" is how you say it because Parkinson's doesn't kill people, the "complications" do. My dad also had CLL (chronic lymphocytic leukemia) and while I saw him in January and he seemed "normal for Parkinson's" I had no idea within two months of coming back to the UK he'd be gone. My dad, my best friend died and I watched it via FaceTime and my husband, in shielding, can't hug me, or hold me and even if I he wanted to cheat the distancing, I'd just come from the market and couldn't risk it either so ...that said, the day my husband went back into the practice to work, before he left the house, he came into our bedroom and hugged me for a long time because of my dad and feeling so alone.  I had my ticket cancelled due to COVID and still can't fly to the States but it's valid until 2022 :laugh:  (I miss my family and friends, but the US has too much COVID for me thanks)...I'm hoping for October...hope. But I bought a ticket so I could go home and see him when before he died, gratefully the ticket is on hold until April 2022 :happy:, but uh, 
But we got that little ray of sunshine about treatment continuing, only so it could be reduced to ONE more treatment when FIVE are due. Because the study is restricted to certain high risk kinds of patients, there've only been 2 patients in our area of the country (Aberdeenshire, Scotland)...they'll recruit new patients but not complete the existing patient group? They had a hard time getting patients at all, seems wrong to me 
A "normal" (nothing normal about it I know) T3b N0 M0 patient has 53% chance of five year survival.  Something I just read said if necrosis is involved it knocks that number way down,  somewhere between 26 and 61%? But they don't know?  I don't know. Husband seems okay... except he's back to falling asleep within minutes of getting home. 
I've just lost my dad, watched as Parkinson's ate away at the man he was whild he suffered 13 years of ups and downs and downs and ups with the hateful disease:cry:

I wonder a lot, what will happen. We've survived one of the 5 year survival rate years (academically speaking, I know it isn't technically five years). We don't eat meat, we get exercise but who knows. They say "necrosis should be a factor in all cancer staging" (I paraphrase) yet there's no number that says wait, it's 53% for the non-necrosis folks, for YOU, it is something other. 
Stay safe everyone, life is too short. 

:wink:

Cari

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    Hi cari67.youve got it in right place. 

    So sorry you've been messed about with your husbands treatment, and lost your father and can't get to America. 

    . About distancing it doesn't work in our house my wife has Alzheimers and parkinsons, can't walk without someone holding her up even then two small steps is her lot, say to the commode from the bed or chair and back,. 

    My immune system doesn't work so on meds to get something there just in case. No neighbours or relatives to do shopping not very good with Internet to get shopping, a lovely neighbour comes round when i have to go shopping or hospital appointment. 

    I'm T3B N1 M1B stage 4 on palliative care since February 2016 just living with my uninvited guest, prostate Cancer gone to lymph nodes, spine, ribs, pelvis and a lung.

    Keeping positive and fighting.. 

    Billy 

  • Offline in reply to Billygoatt

    Hi Billy,

     

    Thank you for replying, I really needed to rant a bit is all. I am sorry to hear about your wife.  My grandmother had Alzheimer's and it was difficult, and for a lot of it, it was right alongside my  dad's Parkinson's getting worse so at times I didn't know what was harder, seeing my grandma essentially catatonic or my dad's sadness watching his mother's illness while his own was advancing...and the levadopa kept increasing to ridiculous dosages until they said there was nothing more to do.  My sincerest empathy to you. I cared for my dad every trip home, my stepmother would take a break and visit with her mother out of state and I would watch my dad, make sure he took his meds.  He developed dementia, but more the Parkinsonian type. It was hard to see him forget how to read or spell I didn't know him that way. He was such a "in charge" man. Now he was struggling to spell his name for someone on the phone. 

    My stepmother has grieved the hardest, she and I never liked one another for decades, Dad brought us to be something like friends but she singlehandedly cared for me dad until the end and her pain is written all over her beautiful face. My dad used to say to my husband, "I don't know how you can be a doctor, it must be so hard, must be hell" and my husband said, somebody needs to care don't they?  My dad said "I guess so" but what my dad was saying was he was too emotional to carry the weight and it's heavy. I can always tell when my husband has had a terrible day.  BUT in the way my dad said that about my husband, I say to YOU Billy (and my stepmother and all of the family members, especially husbands and wives) it takes a very big heart to care for someone with Parkinson's and for you Alzheimer's as well. 

    My fear is that even though I saw my dad three times a year and cared for him, I will never know what it is to do it full time. My fear is my husband will be sick at some point and he's 6 foot, 3 inches tall...how do I help him and I'd certainly need help

    You are a special person for loving your wife this way. My dad would have taken care of my grandmother but it was a struggle to get him going every day, grandma had to be in a care home but they were very good. When a nurse found her wedding ring in the hallway of the ward she was in, she held it until my dad showed up for his daily visit and said, she's too thin for this, maybe take it home.  A lot of people would have taken the ring and ran, they were caring people. 

    My dad gave me my grandma's wedding/engagement rings on the last time I saw my grandma. People think Alzheimer's patients are "not there" but every time Grandma saw me, her eyes would roll with tears, just down her face. Her nurse said, does she have other grandkids? I said yes, I have a brother and three cousins. I was the only one that ever went to visit her, whenever I was at my dad's.  Then the nurse said, you brought her an orchid last Mother's Day, I said yes - good memory. She said, it died, we didn't have time to care for it but when we took it out of the room, the little table it was on was the only place in her room she'd look at. Also, my dad and aunt said, she only cries when you're here Cari. So, the last time I saw her my dad had just given me her ring a day before. I put it on for safety. We got to the care home she was in and though she hadn't spoken in a few years she looked at me, then the ring on my finger, back to me, then the ring and tears and tears and tears came out of her. Then, a slight smile.  It was a very unsuual experience I won't ever forget. 

    I take the tiniest bit of comfort knowing my dad didn't have to go through this COVID business.  My stepmother would have worried herself sick and my dad would have too.  

    Billy I told you about my dad and grandma because I know in some way they are still those people we love so much,  and I know that with my whole heart. 

    Prayers for you and your wife and family. Thanks so much for allowing me to vent a bit in my original message. 

     

    :happy:

    Cari

  • Offline in reply to Cari67

    Cari the I'd of the forum is to help everyone who needs it, and to let people put down in text what they can't say to people they know just let it out a good vent works wonders now and again. 

    Think of the forum as a big friendly family everyone looking out for everyone else. 

    Oh and welcome to the club nobody wants to join. 

    My darling wife is nearly fourteen years older than me and i had to promise I'd look after her before she'd marry me, we've been married nearly fifty years now so haven't done bad.

    Billy 

  • Offline in reply to Billygoatt

    Hello Billy, 

     

    Just to say your devotion to your wife is remarkable.

    A true love story.

    Hope you are both well . 

    Ceyenne

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