One Hell of a Year !

It seems likely now that we are going to have to sell this house and figure out where to live. With the wife now incapacitated for a while, I get to do all the chores inside and out. And what with numerous upcoming medical appointments, finding the time to keep the garden in a fit state given my own bilateral osteo arthritis, is difficult. It would be a shame to let the garden go given all the hard work we have put into transforming it. {See the pictures posted here.}

This time last year she started getting tired and losing her ability to fill the trailer with garden waste. We initially thought it was simply an age thing. The scale of the garden means that the labour is intense. It is easy to walk kilometres inside the garden. The weakness and tiredness got worse, and she developed a growth on her left side/back which was very tender. She hit this on the car seat, and this provoked a line of inquiry about a possible broken as opposed to bruised rib. What followed was X-ray, ultrasound and CT scan. In middle of October the radiologist, after verbal probing, suggested that cancer was a possibility, just before her birthday. A biopsy was arranged, and it took three anxious weeks to get a result back.  The provisional diagnosis was sarcoma. Not good. I checked all of the biological markers they ran and there were many. All the while the wife’s health was worsening, and no treatment plan or diagnosis had been agreed.

We had been pressing for a PET scan and I had even telephoned Switzerland to expedite one privately. Our GP had written a prescription for us.

One day when she struggled breathing crossing the grass to feed the birds, I decided that she needed to go to A&E. I drove her there. She was triaged for a suspected pulmonary embolism. After a Covid test and an X-ray {which I saw} it was obvious that one of her lungs was completely filled with fluid caused by the growth permeating her pulmonary lining. By this stage it was 10cm by 10cm by 5cm.

They admitted her to pneumology and drained her lung by puncture. They got 3.5 litres of fluid out!

During this time, she had a PET scan. Fluorodeoxyglucose (18F) shows areas of high metabolic rate, {cancer and metastasis}. The images came back I saw the write up at the hospital and if the diagnosis was indeed sarcoma, then there was very severe and widespread metastasis. The lung doctor was telling us about the results, and I said the magic word metastasis which means incurable.

Subsequently I had a GP appointment and they let me take the PET scan images home and nobody narrated them to me. The imagery which looks a bit like this is startling and in the context of sarcoma suggested a very short lifespan indeed. Nobody should be allowed to do this alone. I thought about who she might like to see and in the midst of Covid arranged for an urgent GP letter to enable her brother to visit from the UK if needed.

I started to contact people she might like to speak with.

After she stabilized a bit, she was hospitalized at home which meant a hospital bed on the ground floor, here. She was off her face on painkillers but home and eating good food. By this time, we had an oxygen monitor. Her oxygen blood level fell to ~85% and I called an ambulance. She was admitted again and had two more lung punctures to drain her lungs.

Still with the working diagnosis of sarcoma, in early December, she was transferred to a specialist unit in Rennes, 150km away. I had not driven a long distance for a while. I drove down for a putative appointment with a doctor. I got caught in a huge traffic jam and in the pouring rain. There was nowhere to park. On the “promise” that I might speak with a doctor they kept me there waiting until after dark. Nothing materialised. I then had to drive back in the pouring rain on a two lane A road with massive trucks.

The following day an intern called and apologised. She said that they were looking into an alternative diagnosis called Myeloma. I researched this, also incurable but offering a better prognosis. They were redoing the biopsy and had taken blood tests. All the while a traumatised wife was being prepared for a Hickman line, an invasive method that runs a tube into a major artery for delivery of nasty chemotherapy agents.

A few days passed and indeed she was diagnosed with multiple myeloma. That piece of knowledge enabled me to revaluate the traumatic PET scans, in my mind. Preparations were made at home and in house oxygen secured. She was taken by taxi to haematology at St Brieuc and running late met the haematologist. Without warning they took a bone marrow sample by puncture to the sternum to karyotype her illness. They told us that she would be starting a course of chemotherapy at the local hospital.

And so, the cycles of chemotherapy began and what with all the subcutaneous chemotherapy injections, heparin anticoagulants and weekly blood samples she became a pin cushion. The upside of the chemo was that in a matter of six-eight weeks the growth had almost completely cleared and the monoclonal peak due to the myeloma had shrunk below the level of detectivity. We were expecting four cycles of chemotherapy, followed by high dose chemotherapy / stem cell transplant and then two cycles of follow up therapy. Thereafter there would be maintenance Revlimid.

No sooner had the chemotherapy started to work than the bomb shell of stem cell harvest landed. She had to take some granulocyte stimulating factor {yet more injections} and go for an appointment at 7am in Rennes, to check the efficacy of the factor and then do stem cell harvest. No way could we get from here to there, given her state of being and the time of the year for a 7am. So, we rented an apartment in Rennes near the hospital and arranged for the nurses there to inject the factor. The first stem cell harvest was a success. It takes four hours hooked up to a fancy gizmo. Blood out of one arm and then back into another.

The 28 day routine of chemotherapy, in which there are eight days of sleepless nights due to the 40mg of dexamethasone continued. The karyotyping came back, and she has two less favourable chromosomal abnormalities. Out of left field came the swerve ball of a second autologous stem cell transplant, straight after the first!  So, we had to iterate the stem cell harvest games at Rennes. The assay on the first day was a bit low so she had another “listed” drug Mozobil and then the four hour harvest took place. Which was also a success, she has two bags of stem cells in the freezer.

She had heart, lung, kidney, liver and dental check-ups.

She was due to go in for the high dose/ transplant the following week after the harvest. It was bloody hectic, too much, almost bewildering.

Somehow either from the estate agent or in one of the hospital lifts she caught Covid. They would not take her into the hospital with this. I had to source some Paxlovid. I got covid too. She had to wait for a clear PCR test. She had it for three weeks I had it for a week. When she was ready, she was admitted to hospital. I developed the first of three bouts of chest infection. It is still not right.

In a strange way the Covid was a blessing, it provided a pause amidst the madness.

They build you up for the stem cell transplant. They don’t tell you that the evil part of this process is the high dose chemotherapy. The stem cell transplant is the “cure” of the waste laid by the chemo. I was not allowed to visit whilst I had an infection.  For the first week I stayed here.  I did > 2000 km for thirty minutes visiting time after that. For whatever reason they gave the wife a dose of Melphalan which they generally use for the under 55s. {She is 58} The chemotherapy whacked her really hard and she is still suffering from the alimentary aftereffects. When she came out, she was literally exhausted and slept for >18 hours a day. Food and certain smells were very unpleasant, it took six weeks to adjust the diet back towards something normal.

She is now on the second of two consolidation rounds of chemotherapy.

There is discussion about round two Melphalan / stem cell transplant. Once bitten twice shy might apply here, though they are talking about a nanna dose. There will be another PET scan to check the efficacy of the treatment so far. Then they will have to do a post high dose chemo, organ function audit

And then recently she twisted her ankle which has involved more running around and errands. Myeloma makes the bones weak. It has brought clarity on the house decision. This time last year we were remarking about the Dahlias and joking about old age.

We did not see this coming…

It has been one hell of a year!!