Husband was in remission but his back was really causing him grief. His walking was becoming unco-ordinated, or that was how it appeared. His balance was off and sleeping, well, he, we, could forget that, the pain wouldn’t allow for that luxury. I was reassured by the fact he had a routine check-up with his haematologist, even though he was certain that the problem was his old back problems.
Before the meet with the consultant we needed to get some good analgesia on board, up until now he was on a diet of rogue painkillers that I had stashed (you never know when you’ll need them) under the stairs. Own GP, yes have these. Enough for 2 weeks. Repeat prescription request, half dosage prescribed. See locum GP. Now, she was more interested in telling us how ‘away with the fairies’ she was on half the dose of Gabapentin and how dangerous Cauda Equina is. She had suffered it. Had been unable to pass urine, or shit. She was obviously agreeing with husband that the symptoms he was displaying were spinal injury associated. Whatever. Prescribe him adequate pain relief. After another visit and an email we achieved the seemingly impossible, making his pain tolerable. Still horrendous, still incompatible with sleep but tolerable.
At last his consultant appointment arrived. His bloods were okay, as usual. Of note. Don not ever believe that NHL can be ruled out by ‘normal’ blood results. Throughout Husband’s results have been wonderful, reassuring. He told her about his back playing up again, in fact must have bored her rigid by detailing each and every episode of pain, incapacity, nerve damage and disc surgery. Before she nodded off I interrupted and told her that it was atypical, that he had never had difficulty peeing before, that he had never had groin numbness or great balls of fire before., and that all of this was left-sided, where his pelvic mass had been.
CT scan, urgent, requested. Just a little titbit here. I was due an MRI, non-urgent, both our appointments happened to be on the same day. Mine at the good old NHS resource, his at the yummy, private facility the NHS are utilising for their urgent work. 6 days later I had my scan results, 2 weeks later his ‘urgent’ results were still not available. In desperation the facility were requested to get someone, hopefully qualified, to look at the images. They looked and said there was something there, but that they weren’t worried. By now husband was very worried. He was still convincing himself that it was his back problem and he was worried that the nerve damage was more likely to be permanent due to the timescale.
Thankfully the Team were unhappy with the images so ordered a biopsy under CT of the ‘something’. Almost immediately an MRI appointment came through, and a repeat blood screen request.
We were invited for an appointment. Specialist nurse was there. Full results of anything were still not available but the preliminary conclusion was that the lymphoma had woken back up, the volcano was showing activity. Chemo was the way forward and it was booked to start the following Friday. Come in Wednesday to sign the consent form and have a covid swab.
Wednesday. Wednesday the 3rd August 2022. Was it my imagination that the receptionist on the unit seemed kinder than usual? That the staff who usually bustle past acknowledged us, said hello, smiled? Results are in. Large mass, bigger than before. Pressing on spinal cord, encompassing nerves and blood vessels. Its no longer Follicular Lymphoma, it’s transformed and is now Diffuse Large B-Cell Lymphoma, DLBCL. Time stood still. Ice flooded my system. I looked at husband and I could see the fear. ‘Fuck’ was what he said.
Well, that’s not good at all. 😥
I know I don’t need to say this, but in the words of the poem…
Fight it. Don’t give up.