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 .