Phew it’s been rough this time around. I felt sooo sick for the first week, the problem as I found is that just started to make me feel so unwell in all sorts of other ways, it’s very debilitating and I became full on man down. Couldn’t stop sleeping, had severe headaches, the shakes and just in general didn’t really know what to do with myself or what I could do to feel better. As I’ve found before, when you start to feel like that it just sort of spirals out of control and you feel worse and worse. Eventually I saw sense (!) and as I had previously been instructed, contacted my consultant. He became concerned that I was Anaemic and might need a blood transfusion, I certainly seemed to have all the symptoms anyway.
So, yet another trip to the hospital. Had blood tested at Salisbury last Friday, thankfully turned out not to be Anaemic. Had a really good session with Dr Felicity Morgan of Salisbury Palliative Care Team at the Hospice there, where we went through my various meds again – I refer you back to my top tips, this is so important to get right, stay on top of and keep revising!
She prescribed me some different anti-emetic (sickness) medication and gave more advice on what to take and when. Within 24 hrs and with two doses of the new meds the sickness had practically gone. Amazing, within two weeks of meeting her, she’s managed to sort out my sleep pattern – after 5 months, I’m back to pushing out 8 hours a night and in bed rather than on the sofa – and my sickness. I wish I’d met her and her team a long time ago!
Feeling better now but still getting very tired. Another two weeks and I’m having another full set of CT Scans with contrast prior to starting Cycle 3. Then in three weeks I’ll have a session with my Consultant to discuss the results. He’ll assess whether or not Chemo is working and therefore whether or not to continue with it. That’s the next big milestone!
A frustrating day. After going through the biopsy last week and having been assured we would have the results by this Monday then fighting all of this week to actually get them, it transpires the procedure was unsuccessful and they were not able to get a sample from the tumour. Appears we were in the 15% bracket so bad luck really. Very disappointing considering how painful and uncomfortable it was.
Kady and I are extremely frustrated, having originally been told it would only take two weeks from the original Multi-disciplinary Team Meeting, then patiently waiting before harassing people, it took over 7 weeks to finally get the biopsy done. We are now in the position we dreaded; up against Christmas, requiring more time at hospital and no nearer the 100% diagnosis which will allow us to start Chemotherapy, with the tumours in my chest continuing to tick over and grow having still had no treatment.
Thankfully my new consultant Professor Christian Ottensmeier has been incredibly forward leaning and helpful. He is currently trying to organise another CT guided needle biopsy procedure for next week, no easy task at this time of year. He is also arranging for me to have another complete set of CT Scans tomorrow.
We are extremely grateful for what he is doing for us, still frustrated though because of where we are and the days in the diary over the next week that are rapidly disappearing. To lose 7 weeks as we have done is infuriating and now the additional complication of the failed biopsy. We’ve felt really bad about turning down invites to things overXmas, it appears that may well have been a wise move now as the diary is rapidly filling with med stuff .
We are also both utterly exhausted as well, Kady has done nothing but run around like a lunatic for the last week, I pushed out a whole 2 1/2 hours sleep last night and the night before and the night before etc…To say I feel drained would be the understatement of the century, I can’t even muster the will to describe the level of fatigue I’m at.
On the plus side visit to fertility clinic went well, I don’t know where I got the energy, it was a case of chin tucked firmly into strap and run for the hills to get it over with. My ‘count’ is not perfect due to the effects of the various cancer drugs I’ve been on for four months, but apparently I have sufficient swimmers for them to work with. Tick, happy.