Feeling guilty about getting covid and wanting a life

[Limadi]

So new on here. I’ve always avoided blood cancer charities or information sites because it confirms I have it and if I’m honest I’d like to pretend I don’t. I hate this part of my life. Recent events have made me realise- this is my life like it or not!

I’m 43 year old mum with an amazing supportive husband, an 18 year old son and a 12 year old daughter. In October 2019 I was diagnosed with follicular lymphoma and smouldering myeloma. Was a great big massive shock to us- don’t think I’ve accepted it really even now. I had R-CHOP treatment which was successful then went straight into shielding in March 2020.
I have found every part of shielding difficult. I hated the restrictions of not being able to celebrate with the people who supported me that the terrible treatment had worked. I got through treatment with an end in sight and plan of the the things I could do after; I was happy to restrict myself during that time. There are too many hates around shielding to put on here. I did it though.

I was desperate for my vaccines I was like a child on Christmas Eve. I had my first in Feb and second in April.

When shielding was paused again, I started to do things gradually. I returned to work( I had previously returned then shielded then returned then shielded again!). I work in a junior school. The haematology team rang to say they would be starting my retuxamab maintenance ( I’d had 1 dose previously in October 2020). I felt like I could have a bit of a life again all be it super carefully.

I gradually got braver we did more things. We went on holiday to Wales when all their restrictions were still in place and had a fab time. We were normal during the summer we did family days out and meals out. We were very careful, chose our table carefully and kept our distance from people. Sometimes we were the only mask wearing people in buildings.

September 23rd I tested positive for Covid on a LFT witch was confirmed by PCR. I think I caught it from work but I had been to buy some new jeans at the weekend so who knows.
I thought I managed COVID well, one day I had a temp and my body ached for about 6 days. The worst thing for me was I felt so exhausted. The 10 days were over I still didn’t feel 100% so I didn’t return to work. On day 16 I was in A&E ( only place who would see me and felt guilty for using their service) with a high temperature. I had pneumonia. I was sent home with oral antibiotics. 5 days later I was admitted into hospital (via A&E again- only people who would see me) because the pneumonia was worse and got worse over the next few days. IV antibiotics and terrible temperature for another four days. They found I had no COVID antibodies to either the vaccine or recent infection but no active covid in my blood. This did not seem to surprise the respiratory consultant looking after me nor the haematology doctor who popped her head around the door; it did me. This changed the course of my treatment dramatically. I had Ronapreve, dexamethasone and a different antibiotic. I’m on the mend now and at home after 17 days. It was a scary time.

I felt guilty for getting poorly with covid and using the NHS because if I hadn’t of gone out and lived a life I wouldn’t of got it. I felt angry I didn’t know I didn’t have antibodies. I thought I had some protection. And now where does that leave me?
Well advice is to shield but the government doesn’t support this.
I feel guilty again because I want my life back, I want to go out, I want to enjoy time with my 12 year old, I want to spend Christmas with family. But I know if I do I run the risk of reliving the horror and burdening the NHS further.
I feel as blood cancer patients, we are the forgotten few. Why should I feel guilty for having a great summer, going to work, buying new clothes and eating out? But I do. Is it just me that feels this guilt of wanting a life other than a walk outside with the dog? With no end actually in sight for the people who don’t make antibodies, what can I do? I’m getting my 3rd dose soon- for what reason because I’ve been told to I’ll never know if I make antibodies from it because they don’t check.

This isn’t a life, it’s existence for an unspecified amount of time and government couldn’t give a monkeys.

By the way Pre cancer and covid I was a happy sole and didn’t moan hardly at all .

[Nichola75]

Hi @Limadi and welcome to the forum.

I have two daughters, age 12 and 16 and was diagnosed with follicular lymphoma 5 years ago at the age of 41. I also teach in a primary school.

It came as a complete shock to me and I also struggled to accept the diagnosis - I’m not actually sure I’ll ever accept it completely. There are still things I avoid. I’m ok on forums but raising money etc is something I can’t do yet as that makes it really really real. It sounds silly doesn’t it.

I don’t think you should feel guilty about wanting a life outside of Covid. I think we all want that back. I also believe you’ll never know where you caught it from.

You have to assess your risk and do what you feel comfortable with. It’s your life and your choices. It’s so hard to get a balance isn’t it. I know how easy it is to feel guilty about things.

You have been through so much in the last couple of years - and your family to. How are they all doing?

I’m glad you joined the forum. I think many will relate to your experiences and will be able to support you as well X

[Willow]

Thank you @Limadi for taking the time to share so openly and honestly. I hope it has helped you to do this and you will be able to be kinder to yourself. As @Nichola75 has already said, you have been through so much. I have a different blood cancer and don’t have teenagers or children as an added concern, but I do identify with some of the emotions you have expressed. You are very articulate. Please keep us updated, as and when you feel able and thanks again for having the courage to share. Warm wishes. Willow X

[Limadi]

It really doesn’t sound silly to avoid fund raising or anything else that makes you feel uncomfortable. I can fully understand that. It’s taken me 2 years to even look at blood cancer Uk.

My family are amazing.
We have always been honest and open with our children and not tried to hide facts. So although the conversation around telling them about the cancers was very difficult, telling them the truth wasn’t. They are resilient and I try hard to talk to them and make sure they know who they can go to if they don’t want to talk to me or their dad.
My husband is so brilliant but also human so I worry about him.
Mum guilt is super strong at the moment due to all that’s gone on.

How do you keep your self safe in school now all the safety measures are gone?
I work on social and emotional development so keeping distance and mask wearing isn’t really an option.

[Nichola75]

Telling the children was the harder part for me to. You sound like you have an amazing family which makes all the difference doesn’t it! X

It’s tough at work. I’m an assistant head so luckily don’t have a class. I am not expected to cover whole classes at the moment but do teach small groups. At times, as much as I try to, is impossible to social distance and teach wearing a mask. But what do you do

I decided a couple of months ago that if I didn’t feel safe I would tell them and so far they have listened. My consultant has also been amazing in recommending precautions they should take. This has made such a difference. How about you?

[Erica]

Hi @Limadi and @Nichola75 ,oh, I hate fundraising too, one thing that has come out of Covid times is that it has given me the chance for reflection and to realise what I do want to do and with whom. I have actually said ‘no’ to things and the world has not fallen apart. I have also stepped down from some commitments which I was not enjoying.
Since diagnosis I have not dealt with what personally stresses me well and it brings on my fatigue.
As @Willow says you are so articulate @Limadi and I also really appreciate your openness and honesty and I also relate to so many thoughts and feelings that you have.
It must have been scary for you getting Covid and from what we hear it takes a long time to recover from, yes, be very kind to yourself.
It sounds as if you are blessed with your family and I am so impressed with how you can talk so openly with your children and make sure that they feel supported.
I am glad that you managed to get new jeans, I have lived in leggings and tee shirts for 20 mths, I get excited if I put jeans on to go to a medical appointment.
As for antibodies it appears even if we might have ‘some’ antibodies I don’t think anyone knows the quality of them.
I have hope that research will come up with other ways of giving the Clinically Extremely Vulnerable some Covid protection…
Yes, we seem to have been isolating for ever and who knows when the situation will ease.
For the first time I have been into my pharmacy, actually several times in the last week and that also means walking into our local town. I wore my mask and moved out of the way of others and surprisingly it felt quite safe to me, perhaps soon I will venture out, taking suitable precautions.
I think we all need to do with what feels comfortable for us, there are no rights or wrongs.
Look after yourself and take care

[Limadi]

I don’t think I’ll be returning to work anytime soon a because I’m still so fatigued from my experience but also I’m petrified of getting it again. Working from home isn’t really an option is it.

I’m hoping and hoping that some long term antibody treatment becomes available for us all soon. I know things are in the pipeline but that pipe seems long

[muppet]

Hi @Limadi - you’re definitely not alone in thinking this. I know that for a fact because your story and your experiences are bizarrely similar to my own - same age, lymphoma diagnosis, same timeline of treatment then into covid and shielding, and the same feelings of frustration, isolation and being left to fend for ourselves. I especially recognise the feeling of not being able to celebrate the end of successful treatment, and the lack of closure that stems from that.

I’ve got three doses of vaccine in me now but still have no idea whether I’ve actually got any protection from it. Like most blood cancer patients, there’s no end in sight and no certaintly about when we can confidently re-emerge into the world.

I don’t have any profound or wise advice for you, but at least please know that you’re not alone in your experience of the way it made you feel.

[Limadi]

Although very sad that that we are all going through this horror, it is a comfort to know my feelings are not unique to me. Sometimes I’m sure I’ll go mad in my own thoughts. I’d love to switch my brain off for an hour…… they always want to start an night like naughty monkeys .

[Fullofbeans]

Hi @Limadi

Oh gosh, I really feel for you - you’ve been through so much. I had a different blood cancer (Acute Myeloid Leukaemia) but I have a child and have had to shield, so I totally understand the growing need to actually get living your life. We have had to be so cautious for so long - it is totally unnatural.

Please don’t feel guilty though for catching covid and using NHS resources. When you have kids, and especially when you work in a school, I think it is inevitable that you meet the virus at some point. And working is something most of us have to return to. Very few work places will be totally covid-secure. And schools have had to let the virus proliferate really. And your own children will inevitably catch the virus at some point. You really weren’t likely to escape covid! So please don’t feel guilty.

I have a 15-year-old, and although he’s vaccinated, I’m sure he will get covid from school at some point. I feel my introduction to the virus is imminent and inevitable too. It’s impossible to hide from it forever when you have children, or work with children, or go to an office.

But there is some hope for the nearish future, regarding medicines which are being developed, which will hopefully mean covid won’t be quite such a threat to us blood cancer patients. And I’m sure we havent heard the half of what’s being developed yet.

But what we have heard about is monoclonal antibodies for covid - which apparently give you the antibodies that you don’t develop yourself via the vaccine. I have actually just had monoclonal antibodies for the Epstein Barr virus (glandular fever) that reactivated in my body after a stem cell transplant. The EB virus can develop into lymphoma if your immune system can’t tackle it (which new stem cell patients can’t) so they give patients antibodies. And now I am better. The covid monoclonal antibodies that are in the pipeline will hopefully be very helpful for us. I understand there are several labs around the world working on this solution.

There’s also a new antiviral which has just been okayed for UK use, which can be given to vulnerable people who have just been diagnosed with covid, which has great success in preventing serious illness and hospitalisation from covid. It’s called Molnupiravir, and is thought to be rather game-changing.

I’m sure there are going to be many new medicines each year like this, to help reduce serious illness from covid. The entire scientific world is working around the clock on this. Just look at the speed of development of the many vaccines - that was incredible!

And some scientists have said in the news this week that they predict covid will be an issue like it is today, for 4 years- and then covid will just become a recurrent seasonal virus that is quite manageable. So we 're nearly half way there!

So don’t despair- this situation WILL get better for us. We will not always be dodging covid. We will get our lives back. We must not feel guilty if we catch this highly contagious virus and need medical help. We will be able to celebrate our survival from cancer AND covid with lots of family and friends in the near future. We WILL have our lives back.

And then perhaps we should all meet up one summer to give each other a huge hug for being super-human in our ability to cope with the most horrendous situations. We may be the ignored and the forgotten, but we’re most definitely amazing.

A big, virtual, virus-free hug from me.

Fullofbeans

[BloodCancerUK-SupportTeam]

Hello @Limadi, thank you for choosing to join the forum and I hope you feel you have support here with our forum members. I would just like to echo what the members have said in that you should not feel guilty for contracting COVID and for utilising the NHS when you most needed it. From your post I can see that you did all you possibly could to protect yourself and you do also need to live your life. We do recommend that you receive your 3rd primary dose of the COVID vaccine as the previous studies recommend this for Blood Cancer patients as there is potential for patients to develop antibodies, please see our vaccine efficacy pages here: https://bit.ly/3kAYfcR. Have your family members had their vaccines or Booster vaccine? If not please see the guidance on our web site: https://bit.ly/3wLLZLw. As mentioned we are seeing new treatments for COVID coming through so we await guidance and eligibility for this and we will update our web pages as soon as we are able so please be reassured that more treatments are on the horizon. There is the COVID Cancer antibody survey to consider if you would like to take part? This is where your vaccine response is evaluated and will improve understanding of the protection provided by antibodies generated following COVID-19 infection and vaccination in individuals with cancer: https://covidcancersurvey.uk/. I am sure you are completely exhausted by your recent admission and COVID infection, please do take care and I hope you continue to feel better. Please contact the Support Services team if you need to discuss your feelings or any other issues surrounding your treatment: Blood cancer support | Blood Cancer UK. Best wishes Gemma

[Limadi]

We are all as vaccinated as can be including flu vaccine.
Could you tell me if my 18 year old son will be entitled to a booster as he lives with me?

[Fullofbeans]

Thank you @BloodCancerUK-SupportTeam re. the antibody test tip. I didnt know that and have requested one via your link. Brilliant!

[BloodCancerUK-SupportTeam]

Hello @Limadi, your son is entitled to the Booster as he lives with you but he must be 6 months his second dose before he receives the Booster, NHS guidelines here: Coronavirus (COVID-19) booster vaccine - NHS. I hope this helps? Gemma

[Franko]

Hi @Limadi , there’s no need to feel guilty at all. We all have our own ways of dealing with our condition. Having cancer isn’t something that defines you, it’s just something that you carry along with the rest of life’s baggage. You’re still you and you still rightly want to enjoy life the way you always have. Like you I’ve gone out and done as much as possible whilst following any restrictions. It’s a risk but having a life is really why you go through all of the treatment and the bad times. When I’d finished my treatment and gone into remission, I made a million and one plans… for 2020…and guess what happened. All those plans were swept away and I was shut away in the house for 5 months. Once I could go out though, I did and whilst the things I’ve done have not been as grand as my original plans, I’ve still made the most of things. I think most people I know have forgotten I’ve got cancer now because I just carry on as normal. Hope you are well and keep on keeping on! Life is for living!

[rada]

Hello @Limadi
I read your post and thought, hmm, sounds familiar… I have follicular lymphoma, diagnosed last October and been through the same treatment pathway. So on Rituximab now. And yes, I got Covid too in September.

Not as bad as your experience as thankfully didn’t end up in hospital but I was wiped out for a month.

I did an antibody test about 3 weeks afterwards (which I got with the PCR test) and that came up negative. I didn’t believe it and thought it was a false negative, so I did another. But that was negative too.

I was really surprised by this as I thought that the vaccines had a reduced benefit. I’d done an antibody test last summer, after both vaccines, and that had been positive despite me being on Rituximab.

I did some research and it seems that Rituximab might have a cumulative effect, which would explain why I’m not making any antibodies at all… not to Covid or the flu jab or whatever.

I double-mask on public transport now, but can’t do cinema/restaurants/bars etc. And am asking everyone to do a lateral flow test before they come over. Crazy stuff.

Hopefully there will be more knowledge coming out of studies and novel therapies soon. I read about a vaccine targeting t-cells that sounds like it would be a game-changer for us.

Stay safe and enjoy what you can. A case of getting through the winter unscathed.

[Erica]

Hi @rada a great big welcome. I really found a big benefit of this forum was realising I was not the only one in my situation. I think that it can be a lonely, isolating place sometimes as locally I do not know of anyone else with blood cancer, let alone my blood cancer.
It certainly takes a while to recover from Covid doesn’t it, it really takes it out of you.
I look forward to hearing more about you so please keep posting.
Look after yourself.

[Nichola75]

A great big welcome to the group. It’s sounds as though you are doing what you can with regards to the risk. It is a crazy world at the moment isn’t it. I look forward to finding out more about you

[BloodCancerUK-SupportTeam]

Hi @rada ,
Welcome to our wonderful forum. I am sure you will find some supportive conversations in here & as both @Erica & @Nichola75 have mentioned- navigating this still very bizarre & difficult time sure has its barriers & ongoing difficulties. We too are hopeful however with upcoming treatments bringing much needed positive news to the blood cancer community. Heres what we do know so far- Antibody treatments for people with blood cancer | Blood Cancer UK
Our healthcare pages also talk about managing risk here which you may have already came across- Coping with risk and uncertainty as restrictions are lifted | Blood Cancer UK
It does sound like you are doing all you can do to keep safe & if you do require anything please don’t hesitate to get in touch with our support line on 0808 2080 888.

Stay Safe, Lauran

[Nichola75]

Hi @rada. How have things been for you?