Where have we been?

Two years on…..

The last time I wrote my blog about John’s limbo dance with leukaemia was January 2017! Two years ago! And since then, such a lot has gone on. I was wondering why I suddenly stopped writing but it’s not hard to fathom. The last two years have been hard and constantly on the go with hospital appointments and stays for a variety of ailments. We have been in a dark place.

In the end though, as of today, John is in total remission with his leukaemia. Whoopee, I hear you say. It’s not all roses though, unfortunately. Well, it’s like this……

The original transplant didn’t take, so very kindly, the donor agreed to make more cells available and a second infusion took place in April 2017. The consultant had decided to really blast a lot of cells this time to make sure – and it took, but at a cost. John became extremely poorly with an extreme reaction to the transplant and contracted Graft versus Host Disease (GvHD). This is where the host cells take exception to the donor cells and react aggressively. It can affect any, and all, parts of the body. For John it was significant – his skin came out in an ugly, itching and sore rash all over his body; his liver didn’t function properly; his mouth became inflamed, sore and ulcerated; his digestive system rebelled with both stomach and intestinal soreness with resulting frequent trips to bathroom; and most significantly, his eyes became so sore that he couldn’t open them or see.

At the time, the medics had to work very hard to treat the acute symptoms of GvHD. Steroids and anti-rejection drugs were prescribed, and the doses upped – then upped, then upped again. X-rays and MRI scans were taken to check on progress and emergency referrals to liver specialists, mouth specialists, eye specialists, skin specialists, breathing specialists et al were made. In all, John was in hospital for over 6 weeks at that time.

Very high doses of steroids strip you of muscle tone. John lost a lot of weight and a lot of energy. The cocktail and volume of drugs he had to take was an all-consuming activity and sleep was on high order.

As the months went by, and struggling with the consequences of the GvHD and ongoing issues, the consultant wondered whether the particular anti-depressants that John was on was making a difference to the efficacy of the treatment. He suggested weaning off the anti-depressants. We agreed, and so, we thought, the road to recovery would begin.

The GvHD had been so severe that the consequences have been life-changing. The cornea on John’s eyes had been stripped, and his tear ducts no longer function. This means that he is now unable to manufacture tears. He has had severe muscle wastage and and struggles with energy levels. His salivary glands and taste buds no longer function well, and food is like cardboard in texture with no flavour. High steroid dosage invoked the onset of diabetes – now you need to watch what you eat. Anything else?

Fortunately, there is a new treatment, commonly and affectionately known as ‘blood washing’, for those affected by GvHD. This is a process whereby blood is drawn into a machine, whizzed round to extract the T-cells for them to be treated with a drug and exposed to UVA light, then pumped back into the body. For the technos amongst you this is ‘extracorporeal photopheresis’ or ECP for short.

This particular treatment has proved to be fantastic. It has healed the skin and the mouth, and the liver function is back to normal. As a result, John no longer needs to take steroids or immuno-suppressants, and the volume and cocktail of drugs has decreased. And he is diabetic no longer.

Eyes are still a problem, and unlikely to secure a cure. Fortunately, John rose to the top of the list for a specialist eye serum which he uses in place of tears. That’s not to say that it’s hunky-dory though, as his eyes are constantly gritty and feel tired, dislike the sunlight or glare of the computer, and remind John daily, nay hourly, of the chronic nature of the post-transplant symptoms.

Ongoing and as a little aside, there have been periods when John has been seriously ill with chest infections. We’ve trundled him off to hospital as an emergency into A&E and he’s enjoyed frequent stays in hospital whilst they sort him out.

The haematologists puzzled over the frequent chest infections and eventually decided to invite a respiratory specialists to have a look. Bronchiectasis was diagnosed – another result of the GvHD. No worries though, we’ll give you a couple of inhalers and you’ll soon be right as rain.

Physically, the medics have been pulling out all the stops to improve the situation following the transplant and expecting to see results, but John wasn’t really making great progress. And then, about a year ago, we started to see signs of John’s depression returning. He self-referred, and was put a low dose of an antidepressant. It didn’t seem to work. Well, they said, you’ve got to wait a good six weeks or so to let it settle in. Time elapsed, and the depression worsened. OK, let’s add to the mix and give you a low dose of another antidepressant in addition. But mind, you’ll have to wait six weeks or so to feel any benefit. Still no joy. Righty-ho, let’s up the dose of the second antidepressant – but remember, you’ll have to wait six weeks or so before you see any results……

By this time, several months and iterations of increased drugs later, John’s depression had worsened to such an extent that he was no longer a fully functioning human being. The crisis team were called in. Consultants scratched their heads. Support workers tried to help him see some positives. Family rallied round and were on suicide watch. I couldn’t leave his side. He couldn’t drive – the roads were too confusing, there were too many decisions to make…… and anyway, what was the point?

I started to agitate a bit to get the mental health teams to find some way of improving John’s lot. Ah-ha! I know, said one of the consultants, we’ll send you on a Compassion Focused Therapy course. That’ll do the trick. Like heck it did. Everyone there was also suicidal and wanting to talk about dying. The team running the course let the participants’ sentences hang in the air. And what to make of them? John didn’t know; he didn’t get it. And neither did I. I just picked up the pieces when he got home.

Finally, we asked the question – could John go back on the original antidepressant that he’d been on before? Please? Ooh, well, we’ll have to check with your haematologist. And Pharmacy. Need to make sure the drugs you’re on are compatible. Well yes, that’s sensible. But really? Do we have to wait a week/ten days for you to make those simple checks? Finally, finally, the drugs have been changed and John is changed too. He feels better.

We are still attending hospital appointments for haematology, ophthalmology, endocrinology, immunology, dermatology, pulmanology, gastroenterology, periodontistry……..oh, and urology. A couple of years ago the haematologist noticed that the PSA levels in John’s blood test were sky-high. Cue investigations for prostate cancer. Presume prostate cancer following non-invasive checks. Treat for prostate cancer. PSA levels all good now. Lovely.

And so, with John’s mental health beginning to improve, we have hope once again. Life will never be the same again but we are at least spending time with each other! That’s got to be a bonus! Well, for me anyway……..