Carer Story
My husband was diagnosed in 2015.
He was not experiencing many symptoms when he was diagnosed, having been sent to our nearest hospital by his GP. When he visited the surgery it was with chest pains and breathlessness ( mainly when cycling or when climbing four flights of stairs throughout his 12 hour shifts in work). This had started happening only a number of weeks before he went to the GP. The odd periods of tiredness he was feeling we managed to excuse away as his getting older and working alternative 12 hour day and night shifts. There seemed a plausible reason for everything. He did have night sweats which we learned were a symptom, however my husband very often seemed to sweat in bed, especially if he showered beforehand. So again the sweating wasn’t something new.
Following the initial examination at the hospital it was found that my husband was severely anaemic, (haemoglobin of 4.5) which he had not been aware of, and had never been anaemic previously. He had always been fit and healthy – he does not drive and uses his bike every day for work. At the weekends and days off he was generally up in the mountains or on long coastal walks, with or without me. He had been losing weight over a period of 12 -16 months approximately, not a huge amount, since he was always slim, however there had been a number of issues which we thought seemed a plausible reason for it (his mother had been very ill for a number of years, and he had to travel quite a distance over this period to visit her, between the switch over from night to day shifts), and there had been quite a number of other problems – house burglary being one.
All of these life issues were bound to have an impact so we never dreamed it might be something serious, especially since my husband was still doing all his usual activities – hill-walking, cycling etc., right up the time he was diagnosed. His last hill-walk (15 miles) was less than two weeks before diagnosis, and he did in fact mention that he didn’t have his usual energy and thought he might need a tonic! So never ignore weight loss. We always knew this, yet we managed to explain it away in our own particular situation.
There was one exception to my husband’s excellent health history – approximately a year beforehand – he had an eye infection for the first time in his life (blepharitis), so this was definitely because of CLL we now know. If his doctor had done a blood test then it would have been discovered and he would have been put on W&W I expect.
At the hospital they also found he had an enlarged spleen (which had absolutely no impact on his eating habits), and enlarged nodes, neither of which my husband was aware of. He was admitted to the ward and was immediately given a number of units of blood, and over the following weeks he had many more transfusions. When his haemoglobin was up to 8 the consultant decided to start treatment (FCR). So we were not in the situation where treatment was a long way off and we could have explored the options – he was admitted so quickly and we had to go with the flow after that.
We knew nothing about CLL, just that my husband had “the good leukaemia” but needed treatment immediately. The FCR was stopped after four rounds – (my husband was told this was to be the last round by the consultant after his third round), when he became very ill and he was admitted to hospital with a neutrophil of zero.
This was the worst time for us.
Despite this he recovered quickly and was home after a week. He had been ill on a number of occasions during the treatment. His anaemia was a real problem and it seemed a mystery to the consultant, yet anaemia is common in CLL, and is also caused by chemo, (so this I found confusing), but my husband’s anaemia continued right up to the last round of chemo. It was very worrying we really didn’t know what was going to happen. He had transfusions every fortnight, from diagnosis to the end of treatment, when thankfully his counts went up and have remained up ever since. Not where they might have been prior to CLL perhaps, but near enough.
He is 100% fit and healthy now, no one would ever imagine he had this illness, (nor did they at any time except for the few occasions during treatment when he was very very ill).
He is back at work – though doing only six hour days for now, rather than 12 hour day and night shifts. He is doing all the things he did in the past – cycling, hiking.
Currently the CLL does not have any impact on him in any way at all. He has a partial remission and we hope with all our might that it will be a long one, and that in the meantime hopefully new treatments will come on stream and be available in the future should he need them. I don’t think my husband was a typical CLL candidate, though no two persons will react the same in CLL (we were told again and again) but the severe unrelenting anaemia doesn’t seem typical. I did not come across anything like his case in all my reading. I really needed to speak to other CLLrs (particularly in Ireland), to get a comparison, during the difficult time from diagnosis to end of treatment. Hence my first post on Healthunlocked, a support forum which helped so much I cannot begin put into words.
While I have gained a lot of knowledge about CLL, it has come mostly from my own research, through Healthunlocked and all the CLL support sites and the internet.
The consultant is not forthcoming with information – merely rushing through the results during the visit and not open to questions. It seems very different from what I am reading in other forums in relation to patients’ experiences with hospitals and consultants. I do realise there are the not so good stories there too, but it seems a different experience altogether here in Ireland. For instance people in the UK receive paperwork on their results on each hospital visit.
Right now life is wonderful – as normal as it ever was! We could never have imagined it being like this so quickly – relatively.
My husband was so ill at times, it was very surreal looking back, as if it didn’t happen at all. So no matter how bad things can get it does get better. My husband is a very positive person and remained so through it all, and because of him I did too – despite my otherwise pessimistic nature!