Well, it's been an 'interesting' month....... First week of April I began to experience breathlessness. I felt it was due to my liver becoming (visibly) enlarged and therefore pressing on my diaphragm, but I called the hospital and they sent me to the local A&E as there were no assessment bays at my treating hospital. After 15 hours of waiting, mostly, and a few tests, I was sent home at 3am with an appointment for a pulmonary angiogram (CTPA). At 8am that morning the ward phoned to say there wasn't a bed for me and I had a mini meltdown.... with my symptoms increasing by the day, I felt I'd been written off as a problem that would solve itself fairly quickly. I had to attend anyway to have a picc fitted and they made the decision to do the CTPA at the treating hospital so all records were available there....that led to a 7 hour wait and no CTPA. I was so tired and emotional I didn't have any fight left in me, so left with an appointment for a CTPA at 9am the following morning. The results were fast tracked and my Onc's registrar came to the ward to see me with the results. As I expected, no pulmonary embolism, just my enlarged liver pressing on my ribs and diaphragm, the cause of my abdo discomfort and breathlessness along with declining haemoglobin counts. My OH and I gave the Reg a good grilling about beds and waiting. He was very good and promised to make enquiries which is why I got a call on Sunday afternoon asking if I could come in at 8pm. Duly did so and started a 20 hour wait for the trabectedin!! I know enough about the process now to know there are numerous bottlenecks before the chemo arrives on the ward, but it's unblelievably frustrating that beds are occupied when no treatment is being given! There were 2 other ladies on trabectedin in the bay I was in, so we had lots of notes to compare. I eventually got the treatment and escaped at 9pm on the Tuesday night. I was well enough to walk the dog on Wednesday morning and then it was like someone switched me off....I slept the 3 hours to our cottage in Dorset. When our son arrived on the Saturday I could hardly get off the sofa to greet him. Certainly not ticking the quality of life box 😞 Lots of ups and downs since then, culminating in 2 units of blood and a bottle of calcium just to keep me busy for 7 hours yesterday. Now I have a clear week (famous last words?) before it all starts again.... My LFTs were all down quite a lot per blood results on Friday and breathlessness improved with a transfusion. My liver is still enlarged - very obvious when lying down - but the symptoms have eased a little. I know that things can change very quickly with the liver, and I've seen the CTPA image (largest tumour close to joining up with the one next to it) so am mentally preparing myself and the family for the inevitable. My daughter has been having counselling at uni and started a conversation on Easter Monday where she essentially gave me permission to stop treatment when I felt the time was right. It makes my heart actually ache, but I'm trying to focus on the mature way she is handling herself. I know it won't be easy for either of them, but I'm confident they will be OK. Are you having any treatment for your osteoporosis/penia, Bibi? The secondary ladies usually have denosumab injections to strengthen bones. AC, hope your mammo was clear. I'm very envious of your skiing trip, Brave. Hope the training is going well for the London to Surrey. A friend of my daughter's is doing London to Paris this summer - young legs! Lots of love to all xxxx
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