Dear All I do hope you are as good as you can be in these uncertain times and have the love and support you need.I am on Niraparib had the letter and locking down..However there are a few questions I want TO ask .The accompanied advice with the letter, Not eating with the family , Not sleeping with your partner.What do you think.?
My central heating boiler needs an urgent service but would you allow a workman to come into the house ?
LAstly so I am suppose to isolate for 3 months BUT I have an appointment with the oncologist on Monday Will have my bloods taken and see him and pick up my prescription.I live 42 miles from the hospital. Been in touch with them and they say if I haven,t heard otherwise I should attend the app.It,s making me terribly anxious.What do you think what is happening to you ?
To all of you.STAY SAFE. Chris
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dryden1
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It’s a worrying time isn’t it. I emailed the hospital and they will do follow ups by phone but I’ll get my bloods done at the local gp surgery. I’ve been put on the very vulnerable list but my onc said my neutrophils were fine and I was as normal ( as I ever am) . I don’t seem to meet any of the criteria so I think it’s overkill. Chemo ended a year ago. I’m asking my surgery why I got the letter as I’d really miss walking on my own every day where I meet no one.
Not going to your appointment would be a bad move but can your surgery do your bloods and get them to send the results to your onc?
My husband is retired so doesn’t go anywhere. If he did I’d stop sharing a bed perhaps as he might bring the virus into the house.
Your plumber can come into the house on his own and you can shout at him from a safe distance. You need hot water and heating. Sooner rather than later. Or maybe you stay in the bedroom and your husband tells him what and where?
I hope this helps?
Love Alex x
Hi, my husband and son have decided to do the lockdown with me, we felt the the shielding advice for people living in the sand house would be too difficult to maintain. And given I’ve had this disease for four years I didn’t want to spend what may be part of the last year/years apart.
I would also do the boiler quickly, I would stay well out of the way and get your husband to stay at a distance too.
We recommend following the advice from NHS England in the letter, as it's based on current scientific knowledge.
I'm sorry to hear that you're feeling so anxious about going to your appointment. If your team have asked you to attend in person, they will have considered your individual risks of attending that hospital at this time. If you're concerned, you can contact your team for more advice.
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I am also on Niraparib, and had to go to the hospital on Monday for my bloods. I had a telephone appointment on Tuesday for the results. My bloods are good so they left a prescription for my tablets in my hospitals chemist for me to collect ( my husband collected them for me) The hospital on Monday was deserted, the normally packed outpatients was nearly empty, I was the only one waiting for bloods to be done. I was in and out in literally 5 mins. I wore a mask and latex gloves which I binned once outside. Good Luck
I’ve been told my oncs are trying to organise telephone appointments & they will confirm that. I have an appointment in 2 weeks. But I’m trying to find out what they are advising about the scan I’m supposed to have next week. Di
I went for bloods on Monday - a quick in and out with plenty of hand washing and wet wipes. Had a phone appointment with oncologist yesterday. Bloods ok so continuing on Rucaparib which they will deliver. I live on my own but have been using Tesco delivery for ages because of the illness. I think people using PARP inhibitors are on the vulnerable list anyway. I think I wouldn’t have the boiler serviced for a bit. I have cancelled my cleaner and don’t let anyone in.
I'm not on any treatment currently, but I had a CT scan 10 days ago,and that was to decide if it was now or never for chemo, and whether my ascites needs draining (which I'm pretty sure it now does). The onco appointment is next Tuesday to discuss both the scan and treatment and check my bloods, but they've already sent me a text saying not to come, they will phone me instead at my appointment time. I'm under the Imperial Trust in London... Not even sure I could have got there anyway - it means using tube and bus (which I won't) or a cab, and I know my local cab company (who does not mind me carrying out disinfection procedures before I get in it!) has shut down for the duration because of no business. So far, no idea how I will get the bloods done, or be drained either,come to that... but when I went for the scan, the hospital was much less busy than usual - only six people in the waiting room, but paradoxically, I had to wait longer for the scan than ever before - an hour and a half.
Re the boiler - if its urgent and you can get someone to come to do the service, stay in a different room, open the windows everywhere while he's there and get your husband to carry out disinfection procedures after he's gone before you come out your room again, is about all you can do. Otherwise, it will have to wait for a few months, so it depends how urgently the boiler needs attention really.
I haven't received one of these letters (don't really expect to) but I can appreciate how anxious this is making you. However, if your oncology team is still communicating with you and is still prepared to see patients, if you can manage it, I would keep the appointment. I am sure they will be prepared for this. I too live some distance from my hospital but I would keep any appointment if it would give me answers to my fears (not unfounded) that my cancer is back. My CT scan and follow-up appointment were cancelled and I haven't been able to get in touch with anyone who can tell what is happening about these appointments.
You should get your boiler seen to, you need hot water. We have a sort of system for communicating. The chap who does our lawns and hedges is still prepared to come round. As he is outside the whole time and he uses his own equipment, we don't really see this as a problem and he really needs the work. He and my husband just communicate on their mobiles if there are queries, even though he is just inside the house. Just thought this might be useful info., it might work for you. Obviously you will be nowhere near and using the phone keeps your husband pretty clear to. He should disinfect any areas that the heating engineer may have touched.
It's frustrating and a bit scary but we'll get through it.
My mum is on the DICE trial at RM so also got the very vulnerable letter, she has chemo 3 weeks out of 4 and has advised to continue going. They are going to drive (its in london and they are 60 miles north) where as they would usually go on the train, a friend has said the park restrictions are lifted so you can park right outside.
My mum and dad wouldn't be able to do all the things on the letter, they only have one bedroom, one bathroom and my dad isn't going anyway other than the hospital with my mum so she is unlikely to catch anything from him.
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