Good evening all, I’ve just put the girls to bed and wondering how everybody is doing. What a day! I must say I feel a lot safer tonight knowing everybody else now has to stay indoors as well.
However, I’m also sitting here thinking about how I’m going to stick rigidly to the recommendations, especially when it comes to sending my husband out for shopping! Supermarket websites seem to have gone crazy! Also, thinking about those who are indoors on their own. It must be a very scary time.
I’ve also had to expand a bit more on my diagnosis with my daughters. I managed to tell them why I had to be careful without actually naming my diagnosis. It was a good conversation and is enough for now. I asked if they had any questions and will keep asking!
So, all in all it’s been ok. My husband got quite tearful tonight which is unlike him. He has said it’s a double edge sword. He is really glad that I am home with them all (otherwise I’d be in school a few days a week) but says it’s a huge reminder of the reason why and I completely get that.
So, I hope everybody will use this site if they need to chat, need company or just need to vent. It will be so important in the up and coming weeks and I know I’ll definitely be a regular!
Take care everybody and stay safe xxx
It seems to have been an extremely long week. Last Monday I was in the hospital having my rituximab infusion and was sent home with my chemo tablets. My consultant then called me on Tuesday morning telling me not to take them. I have been isolating ever since. I got the NHS text yesterday. I have been trying to get through to sainsburys as they are prioritising vulnerable people for deliveries but it is impossible - I have been doing online orders since November when I had a lumpectomy and continued when I started chemo in December. So my husband will have to try and get supplies. Our son is self employed and works in construction- he was told site was closed today, but now Gove has said they can remain open.
This site is a lifeline in these difficult times. Stay safe everyone xxx
Hi Nichola, thanks for your brilliant post and telling us what it is and is going to be like in your household.
A big step for you talking to your daughters, how did you feel afterwards?
I think it will be very different for family units over the next few weeks being confined together as never before.
I firmly agree perhaps we will need our forum to have a place to ask questions, share, vent or just to support each other. Yes, I will also be a regular. Stay safe everyone.
Hi @SP7 I hope you’re doing alright during this stressful and uncertain time - it sounds so frustrating trying to get through to sainsbury’s, I really hope they get a better system in place soon as it’s quite obviously not working for so many.
Take good care of yourself and remember this forum and our support line is here whenever you need.
The shopping aspect is so difficult isn’t it because you just can’t get a slot. My husband has found the best time to go out is late afternoon. The morning rush is over by then and although not everything is on the shelf we won’t starve. It also means he is not around too many people which is my main worry. Tesco’s seem to add in another date around midnight. I’m trying to keep a check on it. Will keep you updated! I’m glad you have people around xxx
Hi Erica, great to hear from you. I actually felt ok. I initially went into panic mode and got it in my head that I had to tell them everything, including what might happen in the future - I’m so glad I didn’t. I’ve got time to take it slowly and I will keep talking about it and checking in with them. Too much information would overload them right now so I think I did ok. No right or wrong in a case like this is there X
Forget to say stay safe and lol after yourself!
I think you told them brilliantly and are giving them the opportunity to talk about it and ask questions now. A great big pat on the back to you.
Try my Sainsburys tip. Its not easy to get thru on the phone but when you do they will add you to a vulnerable patients group. Tell them you have blood cancer rather than the specific one. Call them often on 0800 052 5500 till they answer but first register for an online delivery account and nectar account and link the two. If you are over 70 you might not need to call them as you may be automatically allocated to the vulnerable list. Other supermarkets may or may not be also available, but I am not aware any have managed to get a prioritising system up and running yet they will soon.
I’m going to give that a go. They currently won’t take any new registrations online but perhaps workers a call to ask?
Oh I see, they were taking new registrations till quite recently. Hopefully the other supermarkets will get their vulnerable customers systems online soon and that will help a lot as will only allowing one order per customer per week. You could also try sending a Twitter Direct message to them they reply to those. In the meantime please look for a volunteer shopper locally many groups are springing up all over the place to help. Hopefully you can get this sorted in a day or two. I am sure they will reopen registrations soon. Bet the government wished they had let Sainsburys merge with Asda now! I am sure this will get better, hang in there and keep persevering. Hard to ask for help I know but it is what it is and as I say will get better.
Had an email from sainsburys this morning and they will be getting the list of vulnerable people from the government. Hopefully this will make it easier for people on the list to get slots.
I wanted to introduce myself, my name is Praxedes, I am originally from Spain but live in London since 2014.
I have been diagnosed with Acute Lymphoblastic Leukaemia on the 8th February 2020.
I was for 5 weeks at hospital having my first chemo round and then I was sent home to have a little break before we start round two. I will need to complete three rounds of chemo before I have the transplant, if I am lucky enough to find a match!
I am a single mother with two daughters and two dogs, my mum is living with us now and she is helping us quite a lot.
I wanted to know how are you all dealing with the fear of having coronavirus and if anyone has been tested or has symptoms.
I hope you are all safe and feeling great!
@praxedes wishing you a very warm welcome to the forum!
It sounds like you have had so much going on, taking care of your family and still having a few more rounds of chemotherapy to go. How have things been for you?
Welcome, @praxedes, I am so glad you have found our community forum. So much has happened to you in a very short time, I expect your fears and emotions are heightened and all over the place. I am glad your mum is now living with you all and helping you out. I find it is so difficult to stop those fears coming into my head. Firstly I am trying not to have the TV on when they are continually talking about the virus, I have my favourite music playing which helps me. I have not heard of anyone that has been tested, in fact a very small number of the population has been. I am isolating in our flat and my husband is self isolating. I realise you have 2 daughters and 2 dogs, but hopefully your mum can exercise them. Your fear must be heightened because you are in the middle of treatment and perhaps keeping in contact with a member of your medical team might mean your fears can be talked about. I make a list of all my questions, fears, feelings, thoughts, symptoms and practicalities beforehand. Bloodwise have a lot of factsheets on their website and there wonderful support services team are there on 0808 2080 888 (Mon-Fri 10am-4pm Weds 10am-1pm) or via email at email@example.com and we are here to support each other so please keep telling us how you are and feeling. Stay safe all of you.
@Erica it’s really lovely to read about what helps you. It sounds like by having some boundaries in place, where you’re making sure you’re not thinking about the current situation all the time, helps you?
Thank you so much for your warm welcome!
Is very funny how I was initially very worried about my condition (ALL with Philadephia+) and suddenly the worries were instead about coronavirus. Is the worse time ever to go through cancer. We are isolating at home, friends are leaving food at the reception of our building and we are not having any physical contact with anyone.
Many thanks for providing all the information and contact details. I have read many of your booklets, they are excellent, very clear and extremely useful.
I have been tested for coronavirus and I was positive. I was very lucky I was in my break between different phases of chemo, and I had the mild version, which is like a flu and a loss of taste and smell, tiredness, blocked nose… It will sound a bit extreme but I was so happy to know I had it and that the symptoms were mild, I couldn’t continue living with the anxiety and stress of getting the virus, but of course that was very risky, I was just very lucky and the best is not to get the virus at all, but that’s maybe a difficult task, when you still need to go to hospital and you are very exposed to get infected.
Thank you so much for your message!
I feel lucky, the first days were the worst, the first night when I was diagnosed at 11pm at the Chelsea and Westminter Hospital, I couldn’t sleep at all as I was all night crying. Then I went to Hammersmith Hospital and I started to feel much better. I have a very positive attitude and only think about small achievements. I have accepted my condition. I was isolated for 5 weeks at hospital and then I went home for a chemo break. I will start the second round of chemo soon and I can’t wait! I just want to recover and win this fight.
hi @praxedes, thank you so much for sharing. That sounds like such a tough first few days for you and beyond, and then to also test positive for coronavirus, I can only imagine how worrying this must have been for you. How was it recovering from the virus?