Apologies

Sorry for not posting for a while, it’s been a hard few weeks. I’ve either not had the energy or it’s been too cold to have my arms out the bed to type!

Monday before Christmas I saw my consultant oncologist. I mentioned the pain in my vein in my arm but he wasn’t worried about that. He was overly concerned about my hip and calf pain. He wanted me to have a CT and bone scan, like yesterday. So they were ordered. He also said because of the aggression of my cancer, being stage 3, positive blood vessels and my age, I’m to have four weeks of radiotherapy rather than three. That’s every week day to Colchester.

The next day I wasn’t feeling too great so spent all day on the sofa. Number three child had an appointment at 5pm that I had to take him too, number five child had to be collected from a school trip at 5.30pm. We got home at 6pm. Rob went to get fish and chips and I went to bed. That’s when I knew something wasn’t right, I was turning down food!

At 8pm I asked for some cucumber and tomatoes so I could take my meds. Noticed I was a little hot. Temperature of 38.9, phoned on-call chemo nurse. Told off for not ringing sooner, pack overnight bag and ring 999! I got Rob to take me in, didn’t think I warranted an ambulance.

Long story short, straight in at the hospital. I had Neutropenic sepsis. When I went in my white blood count was 0.3 (normal range is 4.5-10). By Friday they put a red sign on my door – I was in isolation as my count had gone down to 0.1. I had zero immune system. I was spiking temperatures every night despite being on regular paracetamol, IV antibiotics, IV paracetamol and injections to increase my bone marrow.

On the Thursday evening some of my lovely work friends brought in a Christmas tree and tinsel and decorated my room. Friday another load of them came with fairy lights and more decs! Every nurse/doctor who came into my room commented on how lovely it was.

I was in hospital for Christmas. Rob came in for a couple of hours but I sent him home as I was too poorly. I was finally discharged Friday 30th but back in New Year’s Eve and allowed home New Year’s Day with open access to the medical team if I needed it.

Monday 2nd I had my CT scan and the next day my bone scan. They are fasting the results through and I’m due to get them next week.

On Tuesday I have my radiotherapy planning meeting in Colchester and will see my oncologist then too.

Im glad to be home. On the Friday I was discharged the kiddies finally opened their Christmas pressies. This week I am struggling with my leg. The pain is unbearable. I can walk from the front room to the kitchen but then sob as the pain it too bad so I have to sit down, which tends to ease it a bit.

Yesterday we took the youngest to the toy shop as she had Christmas money burning a hole in her purse. We parked right outside, I walked down one aisle with her then I was sobbing in pain. Rob had to nearly carry me back to the car. I was so upset that I couldn’t even shop with her. I can’t help thinking is this my life now? Am I not going to be able to leave the house without a wheelchair? Should I phone occupational health and get them round for recommendations to adapt our house? I’m not ready yet to what I see is admit defeat but am I delaying the enviable?

This is so hard on all of us, especially Rob. I can’t even make him a cup of tea or cook the dinner as I can’t stand. It’s a horrible feeling – feeling useless. I hope something shows up on the scans which can be treated and this is only temporary. As this is like living in hell!

On the positive side, I lost 8lbs over Christmas 😊