Hi All
Mums had a pretty rough journey since her diagnosis in March. Originally we were looking at chemoradiotherapy, surgery then more chemo but we found out after her first CT and PET scan that she has a hypermobile oesophagus due to EDS so radiotherapy was ruled out. She started chemo but towards the end of the second cycle got neutropenic sepsis so finished that a big early as she was too unwell to take anymore. However, despite that we built her back up ready for surgery but then were dealt another blow when they discovered a mitral valve prolapse with regurgitation on an echocardiogram so they cancelled surgery and referred her to cardiology. After a horrendous 3 week wait cardiology said they didn’t believe it was as bad as first thought and they finally agreed to surgery not without telling us numerous times how high risk she was!
On the 15th September Mum had a 10hr operation and fortunately everything went to plan, she was in hospital 10days as her chest drain had to stay in a bit longer due to fluid on her lungs. She came home but started to seem quite breathless after a few days so we returned to see the surgical team and they found she’d developed a small blood clot at the top of her left lung. They upped her blood thinner medication and the breathlessness is starting to get a bit better.
Shes 6 weeks post surgery this coming Monday and eating is going ok, some early dumping which we’re trying to manage and she hopes to have her feeding tube out in about 2 weeks. She’s still getting a bit of pain from the drain site in her back and the right side of her abdomen feels quite numb to touch with the odd bit of pain which we think is likely the nerves waking up.
walking wise some days she can manage a 15 minute walk, other days she’s too tired, healing doesn’t appear to be linear, do most people find that?
I appreciate it’s still really early days but we wondered when she might start to feel better, when everything won’t feel such a huge effort? Also sounds silly but I wondered when mum might get her colour back, she’s always had rosy cheeks but since starting treatment she’s been so pale, she’s not anaemic of anything. Guess I was just wondering how others did and to give Mum a boost that things do improve.
