Going it alone because of Covid19

[grasswidow]

I am starting chemo in less than a week. Covid19 is changing everything. I will be doing this alone. No one can accompany me. It is very stressful for me and my husband.

[Knapweed]

It is difficult isnt it but at least they are still carrying out your treatment-- a lot of routine procedures and diagnostics are being delayed indefinitely - so i hope you can get used to it - be strong and stay safe during this difficult time xxxxx

[AldeaBlanca]

Hi. I’m sure this is a really difficult time for you and your husband. When I had my chemo the nurse was with me the whole time and chatted for the duration so hopefully you’ll have a similar experience. I think I needed the support more in the lead up to my first session and then after each session rather than during the actual session. The best of luck.

[Mmnyc]

Hi,

During my nurse education appointment I asked the nurse if it was absolutely necessary to bring someone with me for my chemo sessions. I was the opposite of you. I didn’t want to burden any of my loved ones and have them sit through that. Prior to chemo I envisioned needing someone to hold my hand or to help me walk after my session was over but no, I ended up feeling great after my chemo session was over. My nurse told me that in reality you don’t need someone but to see how the first session went and that would determine how things would go.

I had 4 sessions in total and had visitors throughout the sessions but honestly I preferred it when I just had that quiet time for myself. Definitely, the first session is hard because it hits you ‘oh no I have C’ and I used to cry when the nurses couldn’t find my vein but the nurses themselves will be your support. They are true angels! And I’m glad my family, especially my mom were not there at the start of my appointments to see me cry. Now that’s just me, I realize that people are different.

This is such a stressful time to be going through chemo. If you feel nervous, tell your nurses. They will ask you if you want to take an anxiety pill. They recommended that for me because they saw me crying and honestly after session 2, I was asking for it myself 😄because I was so relaxed I felt like it was my ‘spa day’.

I wish you luck and no complications from the chemo🙏🏽🙏🏽

[veriterc in reply to Mmnyc]

Like you I didn't want to burden friends, so went to all appointents etc. alone. I came to the conclusion that the NHS has cleverly realised that if you bring someone with you, you don't ask so many questions; you think you'll ask your companion afterwards - and this saves a huge amount of their time. Staff used to get cross with me, demanding "where's your friend?". Funnily enough, when I had treatment in Europe - where appointments are longer - I was never asked this.

[anrean in reply to veriterc]

I always bring someone with me - the same person each time. Karen hears things I don't hear, and I hear things she doesn't. She also writes as much as possible down during the apptmt so that we can go over it afterward. We also have a list of questions before the apptmt so that we don't forget and have to call or make another appointment. It may take more time, but it also means we do not have to wonder or call again. I wouldn't have it any other way.

[anrean in reply to Mmnyc]

I went to chemo with someone else because the chemo took the starch out of me from the very beginning. I also had a port inserted to make it much easier - no multiple sticks to find a vein! My friend brought things to keep herself busy so that I could focus on taking care of me, which selfishly meant playing on the computer to keep my mind off what was happening. For apptmts, I always have someone with me to listen and write things down - it is amazing what we don't hear because it is so overwhelming. Now that my mother has ca, I go with her and offer support as well as an ear

[Nanaofboys]

I totally understand. I was diagnosed 2 weeks ago. I will see my oncologist Thursday for my first visit by myself. It is a scary time

[anrean in reply to Nanaofboys]

If you are in quarantine with someone, bring that person with you. You would be surprised about how much you don't hear because it gets overwhelming.

[Nanaofboys in reply to anrean]

The oncologist office said no one but the patient is allowed in the building. They told me to set up conference calling so my family can hear

[anrean in reply to Nanaofboys]

Praying this works - hopefully you find support through FaceTime or something similar. I played on the computer during chemos just to keep my brain off what was happening

[Nanaofboys in reply to anrean]

That's a great idea. I have no idea what to expect on my first visit. These last 2 weeks have been a nightmare . One day I'm normal next day I cry all the time and feel like I'm gonna die. This stupid virus makes things so much worse. I think maybe I'll feel better once I talk to oncologist

[Mmnyc in reply to Nanaofboys]

I was like that around this time last year. So scared. Crying at night. Googling EVERYTHING! Hardly got any sleep. Talking to god. It’s completely normal. I saw chemo as the worst thing that can happen to me but honestly In the end, 2019 was a tough year. Chemo is not a walk in the park but I survived. I survived all of needle biopsies, those scary MRI’s, and a bilateral mastectomy. You will too. 🙏🏽

[grasswidow]

Thank you everyone who replied to my post. What should I bring to my first chemo appointment? Do I need to bring snacks or lunch. It is supposed to take around 5 hours.

[anrean in reply to grasswidow]

Yes, bring something to eat - if you don't get nausea you will want to eat - I ate every time. Small bites, no spicy foods, choose something your tummy will like, not your tongue! Also bring a book or the computer or something else that will keep your mind busy for 5 hours. In addition, you might want to wear something light and bring something heavier if you get chilly. Plan on napping, just because. I napped each time, but not for every long.

You CAN do this!!

[Mmnyc in reply to grasswidow]

You can bring snacks but honestly from my experience I didn’t have an appetite until lunch time. I tried the cool caps and had to be at the hospital literally from 7:30 - 7:00 for my first 2 chemo sessions. My friend brought me soup, that helped. At my hospital they offered patients lunch, like a sandwich, fruit, and water. I actually preferred the hospital food to my own snacks. Your infusion room will probably have a tv, and a reclining chair. I used to tell my nurses to turn off the lights and they did. Like I said earlier, the nurses gave me an anti-anxiety pill which helped a lot! That pill combine with the other stuff they put in my iv completely relaxed me and I pretty much slept through my infusions. The most annoying part had to be when it was time to change my cool caps🤦🏻‍♀️ It would disturb my beautiful naps.

At your hospital they should have pillows and blankets also. I had to take extra because of the cold caps.

[Nanaofboys in reply to Mmnyc]

What are cold caps? I see my oncologist this week to start my process

[Mmnyc in reply to Nanaofboys]

Cold caps are supposed to preserve most of your hair while you’re undergoing chemo. I had long beautiful hair before my chemo and was determined to preserve some. Unfortunately it did not work for me. I even cut my hair into a bob before I started the chemo so that I wouldn’t be as sad if I lost it but apparently that was a mistake under the cool caps ‘rules’. Well I didn’t know and my hair started to shed after session 1. I still had about 80% of it by session 2 but I knew my hair wouldn’t make it by session 3😢and I was right. Amazing how your hair just falls. I’m the beginning it’s so annoying. I hated seeing it on the floors, pillows, clothes, everywhere! Then I got used to it. I had to suck it up and starting wearing a wig. Now looking back I can laugh at how ridiculous I looked in a wig. There’s an art to buying and finding the perfect wig and it took me a while. But don’t worry! Your hair will grow back. Mine has and I ditched my wig in February 🥳 I couldn’t take it anymore, especially since They have me on lupron injections and anastrazole🤯

Oh, so cool caps are sort of helmet like and made of ice. They don’t hurt, they are annoying (have to be changed every 25 minutes or so) and time consuming plus super expensive, not covered by insurance. 🤦🏻‍♀️Looking back I wish I would’ve saved that money and gotten a more realistic wig but oh well 🤷🏻‍♀️

[macor]

My husband did drive me into the chemo appts...I had 8 of them...but I honestly feel like I could have done it myself. Each session lasted about 4 hrs...I did bring snacks ...my appts were usually at 1...but if I had one that started in the morning they served lunch. They had an individual TV for each person and I always brought puzzle books or magazines. The nurses were very friendly and helpful, and honestly...the time passed quickly. During the appts themselves I always felt fine ...the days after, were when I felt the effects. Good Luck !!

[RLN-overcomer]

Sister, and yesssss warrior I don't know if you believe in God, or not, but I do and I am praying God will keep you, and your husband safe from this Corona virus. I have a friend who has been getting her chemotherapy, and blood work for the last 2 month's, every week. She is not worried. We/I pray the Serenity Prayer. She is well and has not gotten sick, The hospital takes even more precautions with chemotherapy patients. Fear, and worry change nothing, but prayer, and taking the proper precautions can change everything. God bless you XoXoXoX

[earth-angel1]

I went through some alone. I used my cellphone to talk to family and friends.

You'd be surprised how many staff members talk to you and become family. I also took time to sleep since I was in about 10 hours each session. Prayers. There are many cancer sites on FB that can be comforting. Chris beat cancer has good info on diet and videos from survivors.

[Curbs]

Hi it is a very stressful and frightening time, however don’t worry about going on your own as the chemo nurses are the kindest most caring nurses and it will be good for you to only have to worry about you and not have to put on a brave face in front of your husband. Seeing you have your treatment will make him worry even more, my husband couldn’t cope with The Christie and used to walk round outside whilst I had my treatment. 😘

[mmb12497]

I once heard a quote by a psychologist that went something to the effect of: 'only the strongest are inflicted with some of life's greatest burdens; you have been chosen because [our higher power] is confident you will make it though'. ...but I know that - in reality - it just isn't fair.

Our hospitals and doctors have done a really good job at altering/modifying how things operate. I am confident that your team of medical providers will make things literally, as comfortable and easy as possible.

This is a major blow to you and your husband and luckily you found us (CHADD) because we're on your side. We've got your back. You aren't alone.

...and I have an idea for you: what are your thoughts about copy/pasting parts of our forum and bringing a notepad. The notepad could be used to write a message to us that you can post when you get home. If you are really interested in forgoing a transformation, I might suggest this little exercise. In your notepad, write your answers to the following and keep doing it during each treatment. T

1) what you are doing (i.e. the most uncomfortable parts, etc.)

2) the emotions you are going through (i.e. despondent, ready to give up, end of the world, heartbroken, grief, etc.)

3) who this is impacting (i.e. your husband too, your marriage, family, work, etc.),

Then take a few minutes or as long as you need and spend some time reflecting on how your emotions are also impacting your husband, marriage, etc.

5) make a list of all the ways you could make sure your husband isn't worrying about you, about how life would be if we weren't impacted by COVID, and what life is going to be like when this is all over and you have survived it.

6) think about what would you be feeling/doing right now if you were never diagnosed with breast cancer and write it all down

7) re-write everything from #5 and #6 in future tense, as if you had the power to make everything okay.

Take some time to think about how you could literally change your mindset to a positive one, whereas you are feeling confident about how everything will play out; and how your new outlook/feelings/mindset will impact your husband/marriage. I guarantee that with focus, concentration, and a genuine belief in the power of a positive mindset, your husband will do better... and you will too.

...and let me know if this was too much to swallow. It's part of what I do for a living and my intent was to truly help make this easier on you. By the way, we're all in this together.