tag:blogger.com,1999:blog-79436348015114290472024-03-05T23:53:28.992+00:00Living with CLLDave Clemo's account of living with chronic lymphocytic leukaemia.
Don't forget to add your comments when you drop in.Davehttp://www.blogger.com/profile/04602485359462793611noreply@blogger.comBlogger154125tag:blogger.com,1999:blog-7943634801511429047.post-51064586863913770292020-12-26T19:00:00.003+00:002020-12-26T19:00:56.362+00:00£300 Raised!<p>Well, that was amazing! I raised £255 via the crowdfunding page and topped it up to £300!</p><p><script type="text/javascript">
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</script><p></p>Davehttp://www.blogger.com/profile/04602485359462793611noreply@blogger.com0tag:blogger.com,1999:blog-7943634801511429047.post-9356724546159150562020-12-20T17:02:00.000+00:002020-12-20T17:02:21.688+00:00Haircut? Done!<script type="text/javascript">
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Well, I did it. Back on November 3rd, exactly ten years after the specialist told me that I was officially in remission, I had a haircut.
I set up a crowdfunding page hoping to raise a few quid for the local hospice and posted it on Facebook. Amazingly my target was reached in a day.
I've now closed the crowdfund and will be sending it all to Cransley Hospice before Christmas.
<div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi3FMo4FbyjVKSrw1EKUMqhZNXLdQInDhRNk9fq3UEc_vfLCoHiBxE64yV0BPaLe_84VhH_TIp-Q2zGbA-k3S8vRTUo4TZnq7r3kF0dOKdy7zP8S2qheQ-ZA0mUO0L-5HH7Av-yv7cJ2i4v/s788/Haircut+3.jpg" style="display: block; padding: 1em 0; text-align: center; "><img alt="" border="0" width="400" data-original-height="590" data-original-width="788" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi3FMo4FbyjVKSrw1EKUMqhZNXLdQInDhRNk9fq3UEc_vfLCoHiBxE64yV0BPaLe_84VhH_TIp-Q2zGbA-k3S8vRTUo4TZnq7r3kF0dOKdy7zP8S2qheQ-ZA0mUO0L-5HH7Av-yv7cJ2i4v/s400/Haircut+3.jpg"/></a></div>
Davehttp://www.blogger.com/profile/04602485359462793611noreply@blogger.com0tag:blogger.com,1999:blog-7943634801511429047.post-52215946936582800822020-10-25T01:09:00.000+01:002020-10-25T01:09:55.366+01:00Ten Years Remission- Time For A Haircut?<script type="text/javascript">
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On November 1st I will have been in remission for ten years.
To celebrate I will have a haircut in aid of the local hospice.
Here's the story.
When we returned from our holiday to Cornwall I decided not to have a haircut. I don't know why. Maybe it was a denial of the passing of time, the descent into senility, maybe it was time for a change.
This is me in September 2007
<div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhCNZMuOTsseQ1auPN8akaIHyDu8T74_PC1rjsWh84Dd3jkkaev0lrq2JkRXNEx666olegRJhoxcqNtkBQ2YN2i5sUCC8k4anaS9MLIW5QHMiIWvPffbgFMYIr77PBz8t_Jpmh06NFaacIA/s1500/1.+Summer+2007+crop.jpg" style="display: block; padding: 1em 0; text-align: center; "><img alt="" border="0" height="320" data-original-height="1500" data-original-width="733" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhCNZMuOTsseQ1auPN8akaIHyDu8T74_PC1rjsWh84Dd3jkkaev0lrq2JkRXNEx666olegRJhoxcqNtkBQ2YN2i5sUCC8k4anaS9MLIW5QHMiIWvPffbgFMYIr77PBz8t_Jpmh06NFaacIA/s320/1.+Summer+2007+crop.jpg"/></a></div>
By the following March 2008 I looked like this
<div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhnnm0gWeIvC43avwgyUrXy8BeUwDaZnpfXR6so5NM-J82Q3van-FFUHFscp44GxqZ67EFFLpybIEXWXiGtXLCJrX2cj8lVLEuSQj8s9c494_LSpBuGnjCpEAl-2sB3YYGmgeLfrqNkzON_/s1500/2.+March+2008+2+crop.jpg" style="display: block; padding: 1em 0; text-align: center; "><img alt="" border="0" height="320" data-original-height="1500" data-original-width="1291" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhnnm0gWeIvC43avwgyUrXy8BeUwDaZnpfXR6so5NM-J82Q3van-FFUHFscp44GxqZ67EFFLpybIEXWXiGtXLCJrX2cj8lVLEuSQj8s9c494_LSpBuGnjCpEAl-2sB3YYGmgeLfrqNkzON_/s320/2.+March+2008+2+crop.jpg"/></a></div>
And in May 2009
<div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjqNVTJ_n_y7HExzAP0go1fmN4o1aAdwIhFAehZvi-3flJQabDLfNTuapYrjIgk9qqudJj3aVcfQA1kxyPYtgsIV70pstqdtEm-ogaNVabidOlSiXSmOaT2iE82BmykaR_N5NcMCOmNvDe7/s1500/3.+Whitby+May+2009.jpg" style="display: block; padding: 1em 0; text-align: center; "><img alt="" border="0" height="320" data-original-height="1500" data-original-width="1265" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjqNVTJ_n_y7HExzAP0go1fmN4o1aAdwIhFAehZvi-3flJQabDLfNTuapYrjIgk9qqudJj3aVcfQA1kxyPYtgsIV70pstqdtEm-ogaNVabidOlSiXSmOaT2iE82BmykaR_N5NcMCOmNvDe7/s320/3.+Whitby+May+2009.jpg"/></a></div>
And July 2009
<div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi1ifPoWDhpuJXJ3YXJvV4e-fE83P874g6Si7jzs6OJ-YWntVfrgvaQCEMH3VN0FFMAmLNXU4VhCihMkh252X2wZrKL0-5hSxVFX-zjktww541HNYPaqrVNWdPrMdXaPSr5l0Lg1IDraQxL/s1500/4.+Nicki+Gillis+Selsey+gig+007.jpg" style="display: block; padding: 1em 0; text-align: center; "><img alt="" border="0" height="320" data-original-height="1500" data-original-width="799" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi1ifPoWDhpuJXJ3YXJvV4e-fE83P874g6Si7jzs6OJ-YWntVfrgvaQCEMH3VN0FFMAmLNXU4VhCihMkh252X2wZrKL0-5hSxVFX-zjktww541HNYPaqrVNWdPrMdXaPSr5l0Lg1IDraQxL/s320/4.+Nicki+Gillis+Selsey+gig+007.jpg"/></a></div>
Soon afterwards I was diagmosed with CLL. The specialist thought that I'd lose all my hair so I decided not to cut it.
This was me the following summer when I toured with Nicki Gillis.
<div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgChodZv9D8acPfrmOTk-ZZbWs_oV82yxNhg28zqM5tkeD4dVgr2IIRVyEzT-eRhDsiQ3PH0HNbtpWVyrMeNtZTr1zaSQIr2xbr0_-fUvKjXrzmWmexnKj9IY4a4dZI33D3Th0HryeMJNmv/s1500/5.+Dave+2010.jpg" style="display: block; padding: 1em 0; text-align: center; "><img alt="" border="0" height="320" data-original-height="1500" data-original-width="967" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgChodZv9D8acPfrmOTk-ZZbWs_oV82yxNhg28zqM5tkeD4dVgr2IIRVyEzT-eRhDsiQ3PH0HNbtpWVyrMeNtZTr1zaSQIr2xbr0_-fUvKjXrzmWmexnKj9IY4a4dZI33D3Th0HryeMJNmv/s320/5.+Dave+2010.jpg"/></a></div>
I celebrated my remission by having a haircut. My friend Sheila cut off about four inches of hair.
Since then I've had a haircut every 4 months or so and I've watched the plume get thinner and thinner.
I think it's time it was finally cut off don't you?
I was planning to give a concert in aid of the local hospice earlier this year.
The lockdown put paid to that, so I'm looking for sponsors.
The more people pay in, the more the hospice will benfit
I will open a fundraising page and update this post.
Davehttp://www.blogger.com/profile/04602485359462793611noreply@blogger.com0tag:blogger.com,1999:blog-7943634801511429047.post-39799343793055472542020-10-18T12:35:00.001+01:002020-10-18T12:35:43.619+01:00I can post again<script type="text/javascript">
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By a fluke I've been able to log back into this site so I may continue this site in parallel with the CLL Revisited siteDavehttp://www.blogger.com/profile/04602485359462793611noreply@blogger.com0tag:blogger.com,1999:blog-7943634801511429047.post-12653917121226049962014-12-16T20:02:00.000+00:002014-12-16T20:02:18.869+00:00Update on cardioversion- an answer to prayer?Well well well.<br />
<br />
In yesterday's post I described the events leading up to today's booked cardioversion.<br />
<br />
I'd had an ECG last Tuesday and the nurse and I examined it closely and sure enough the atrial fibrillation was there for all to see.<br />
<br />
I had another mini ecg done on Sunday before undergoing an MRI scan that lasted about 45 minutes and involved a lot of noise and thumping of my chest as my blood flow was measured in order to be able to synchronise the scan with the blood flow and therefore get a clear image of the arteries.<br />
<br />
I had a blood test yesterday that confirmed it was all systems go, so I followed the instructions for nil by mouth after midnight and went to bed around 10.00.<br />
<br />
I woke up at 3.30. Read a book until 6.00 when my alarm went off then took my morning pills had a shower and was ready in good time to set off for the hospital.<br />
<br />
Sue dropped me off and I arrived at reception, settled into a corner and continued with the book. Eventually I was collected and taken to my cubicle for the morning where I was asked to strip to the waist ready for the treatment. A nurse attached tabs to my chest and ankles and connected the ecg machine. She ran the test, looked at the trace and then after a minute ran the test again. She said the paper hadn't fed correctly the first time.<br />
<br />
I went back to my book for a few minutes. The Ward Matron stopped at the foot of the bed. She was to fill out the consent form and obtain my signature. We worked through the form which is several pages long. Then she picked up the ECG printout...<br />
<br />
<br />
And said "This is a normal heart rhythm. There's no way we will do a cardioversion on this"<br />
<br />
<br />
She showed me the printout. I showed her the printout from September. My printout clearly showed an atrial fibrillation- and I know that last week's printout also showed it because the nurse and I compared the printouts. But today's trace showed a normal rhythm.<br />
<br />
<br />
Everyone was smiling. I had a cup of tea and a slice of toast while other patients were one by one wheeled into the treatment room, emerging twenty minutes or so later slowly waking up from the anaesthetic.<br />
<br />
Eventually my copy of the letter to my GP arrived and I was free to leave. I walked down to the out-patient's entrance and waited for Sue to come and collect me.<br />
<br />
<br />
I'm a Christian who's not attended church for many years. I find it hard to pray- in fact- I don't pray. But I know that friends all over the world have been praying for me. Even my pharmacist- a Hindi (I think) told Sue that she'd been praying.<br />
<br />
<br />
Were their prayers answered? Was this a miracle? Divine intervention?<br />
<br />
<br />
What happened between last Tuesday and today? I've been racking my brain. One possible cause might have been the hammering my chest received during the MRI scan. Has this happened before?<br />
<br />
<br />
I don't know. Maybe I'll never know. I feel a bit like the blind man healed by Jesus (John 9:25) who said- ""All I know is this: once I was blind and now I can see."<br />
<br />
A big thank you to anyone who prayed for me. Be encouraged.<br />
<br />
<br />
I have an appointment with the specialist in around four months, with a week long programme of ecg tests beforehand<br />
<br />
<br />
<br />
<script type="text/javascript"> var _gaq = _gaq || []; _gaq.push(['_setAccount', 'UA-17321590-1']); _gaq.push(['_trackPageview']); (function() { var ga = document.createElement('script'); ga.type = 'text/javascript'; ga.async = true; ga.src = ('https:' == document.location.protocol ? 'https://ssl' : 'http://www') + '.google-analytics.com/ga.js'; var s = document.getElementsByTagName('script')[0]; s.parentNode.insertBefore(ga, s); })();</script>Davehttp://www.blogger.com/profile/04602485359462793611noreply@blogger.com0tag:blogger.com,1999:blog-7943634801511429047.post-54863323464333401712014-12-15T10:43:00.000+00:002014-12-15T10:43:56.018+00:00All change again. Christmas 2014I've been reading back through my posts and it seems that I've had nothing to report for several years.<br />
<br />
I've been in remission from CLL since 2010, and as long as I don't get tired or stressed my Chrohns is under control. The cause of the cough that I've been complaining about on and off for years has also been identified. I saw an Ear Nose & Throat specialist and had a X-ray following a drink containing barium which confirmed that I didn't have pouches in my gullet and confirmed that acid reflux was the cause. Taking a swig of gaviscon fluid before going to bed stopped the acid from burning my gullet and causing the irritation that fed the cough. As for the dizziness I used to feel when coughing hard- I'll come on to that in a minute.<br />
<br />
Some time ago I discovered the benefits of Vocalzone lozenges. Singers like Tom Jones swear by them, and I find they stop me getting hoarse and, as long as I warm my voice up, I can sing all night. They have another benefit as well. I've been keeping a lozenge in my mouth when going to sleep and I can't explain why, but this has worked better than the gaviscon and I've not woken up with a sore throat as a result of acid reflux. I don't know why it works , but it does for me.<br />
<br />
I've been attending the skin clinic at the hospital for a few years. I used to have an unsightly skin condition on my right index finger. I've had it for at least 30 years but in recent years it has started to spread. During cold weather the skin used to crack open and bleed and my GP got me an appointment. They took a biopsy and diagnosed Bowen's Disease, a pre-cancerous sking disease. A couple of years ago they treated it with Phototherapy which involved smearing the skin with a drug in a greasy cream. This was left for a couple of hours to soak into the skin and then a bright red light was shone onto the skin. The active ingredient would only be absorbed by the diseased skin cells and the light then reacted with the drug and burnt the diseased skin away. I had to wear very dark glasses to protect my eyes, and it was strange to have the feeling that your finger was being held in a flame while the skin around felt normal. I've had this operation repeated since and earlier this year the doctor from the diseased area using liquid nitrogen (the same technique he used to treat the crop of warts that appeared while my immune sytsem was low). It's a matter of containing the disease and treating it every six months or so. As long as the disease doesn't develop into full blown cancerous tumours this should contain it. If it does- then I lose the finger.<br />
<br />
For the last year or so my blood pressure reading have been on the high side. I've not been troubled by this, although I do get dizzy when I have a coughing fit and I have to hang on to the furniture, and if I get up too quickly. However, my GP thought it was time they had a look in depth at my blood pressure.<br />
<br />
After an enjoyable couple of weeks on holiday in Cornwall where I was able to walk (albeit not very far, and not as far as Sue would like- as she's now started doing 10k walks around local country parks and long distance footpaths), I returned home and off to the surgery to be fitted with a 24 hour Blood pressure monitor. I don't know anyone who's been able to keep one on for longer than a few hours. Mine lasted 5 hours before I tore the cursed thing off.<br />
<br />
A week later my GP prescribed a course of drugs designed to reduce my blood pressure. When I got home I carefully read the instructions and it was with some misgivings started the course. Within a day I was feeling ill and a few days afterward managed to get in to see my GP as I felt so ill. He took my blood pressure and listened to my heart and summoned an ambulance.<br />
<br />
A few minutes later I was on a trolley in A&E wired up to an ECG machine and heart monitor. My heartbeat was going crazy. They managed to slow it down using betablockers and they kept me in overnight for observation.<br />
<br />
And so the next stage of my life has begun. I have been diagnosed with atrial fibrillation, an irregulat heartbeat. The treatment involves taking Warfarin each day, the exact dose based on the results of a blood test every week or two. I have had to cut out certain foods, but as I'm not a foodie I can live with that.<br />
<br />
The downside is that the stress has aggravated my Crohns which leaves me doubled up in agony when it strikes. I spent a miserable few days on holiday with a mouthful of thrush and ulcers and without any Nystan to combat it. The current problem is that Nystan reacts with the warfarin so is on the banned list, along with certain painkillers, so I've had to grin and bear it.<br />
<br />
The good news is that there was a cancellation for the cardioversion treatment and I've been bumped up the queue. All being well, I will have had the treatment and on the road to recovery in the next day or so.<br />
<br />
And after that? Who knows.<br />
<script type="text/javascript"> var _gaq = _gaq || []; _gaq.push(['_setAccount', 'UA-17321590-1']); _gaq.push(['_trackPageview']); (function() { var ga = document.createElement('script'); ga.type = 'text/javascript'; ga.async = true; ga.src = ('https:' == document.location.protocol ? 'https://ssl' : 'http://www') + '.google-analytics.com/ga.js'; var s = document.getElementsByTagName('script')[0]; s.parentNode.insertBefore(ga, s); })();</script>Davehttp://www.blogger.com/profile/04602485359462793611noreply@blogger.com0tag:blogger.com,1999:blog-7943634801511429047.post-88822541103829758322014-03-10T20:02:00.000+00:002014-03-10T20:02:32.351+00:00Update March 2014<script type="text/javascript">
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The enduring legacy of my CLL is that my immune system was shot to pieces. it's over three years since my last bout of chemo now and I would have hoped that I'd be getting back to normal (whatever that is).<br />
<br />
Alas, it seems that I succumb to every little sniffle going around . I had the flu jab last autumn and so I haven't gone down with flu, but when I get a cold of cough, it's as if I had flu.<br />
<br />
I'm able to manage my health by taking it easy as much as possible, but there are time when I get tired or stressed and that's when I get hit. My Crohn's kicks in, and although it's not as bad as ulcerative colitis, the stomach pains and flatulence keep me on my toes. I can't stray far from a WC- just in case it's more than wind.<br />
<br />
I don't know if you've heard about Spoon Theory but here's a link<br />
<br />
http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/<br />
<br />
Some days I don't have enough spoons to get out of bed. That's today. I know exactly what brought it on and I'm doing all I can to manage it. You see, since I had the all clear I've been making up lost time by recording albums of my songs. One album in the future may be released posthumously- but hopefully not for a while yet. This week I've been playing some local shows and going on local radio to promote my album "Hard Times" and it's amazing how just sing and talking takes it out of me.<br />
<br />
On Saturday we went to Corby and we were interviewed and we played three songs. By the time I got back I was out of spoons. On Sunday I rested all day ready for our feature set at a pub in Moulton. We went down really well, but today- yes you guessed, I'm totally wiped out. I've been in bed sleeping most of the day. I'm going to have to do the same again tomorrow ready for another show on Wednesday (assuming I still have a voice, because this head cold is a killer)<br />
Then the same on Thursday before a trip over to Cambridge to play a couple of songs at the Folk Club. I have another day to rest up on Saturday before rounding off this week of playing with a show in Corby on Sunday night.<br />
A few short years ago I would have laughed at this schedule. Before I was diagnosed we were driving hundreds of miles to perform all over the UK. Alas, those day have gone.<br />
<br />
So, what do we do? Sit and mope about all the things we can't do? Or just rejoice that you're still breathing and doing a little- even if you wish you could do more?<br />
<br />
If you're interested, here's a link to where you can hear some of my songs and watch some videos.<br />
www.reverbnation.com/daveclemomusic<br />
<br />
God bless you<br />
DaveDavehttp://www.blogger.com/profile/04602485359462793611noreply@blogger.com0tag:blogger.com,1999:blog-7943634801511429047.post-87504759446149678662013-11-12T12:25:00.004+00:002013-11-12T12:25:48.243+00:00Another year on<script type="text/javascript">
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I've just had my six monthly checkup and there's nothing to report. Dr Lyttleton is happy with my blood results, my weight is stable, my health is generally good, my various conditions are currently behaving themselves. The mild Crohn's is under control with just the occasional twinge. I'm ok as long as I don't get too tired. My gastric reflux ditto. I'm hoping that dosing it with Omeprazole in the mornings and Gaviscon in the evening will prevent a return of the dreaded pharygitis this winter. So far, so good.
I'm still working three days a week, and I'm still writing, recording and performing my songs. A recent highlight was an invitation to sing at a festival in Norway. It was very stressful getting the flights organised, but we got there (my son and I)and our music was very well received. Maybe we'll get other invites in the future. One thing is certain, they will need to be less intensive than the hardcore touring I was doing a few years ago, when we travelled miles and played shows every night. I know that would make me ill, and I've had enough of that, thank you very much!
So- nothing to report. That's a good thing. For anyone who has been diagnosed with CLL recently, please read the posts back to the beginning. It's amazing what can be done these days.Davehttp://www.blogger.com/profile/04602485359462793611noreply@blogger.com0tag:blogger.com,1999:blog-7943634801511429047.post-19543315290567698612012-09-28T11:01:00.001+01:002012-09-28T11:01:15.260+01:00September update<script type="text/javascript">
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I've had my six monthly checkup and basically there's nothing to report. My lymphocite (sic) count is 0.9 (whatever that means). When I was diagnosed with CLL in 2009 it was above 30 so that's good.
My weight is above 106Kg. 3 years ago it was less than 94. I've just come back from a holiday in Cornwall so some of the weight gain is down to all day breakfasts, Cornish Pasties and Cream Teas (with clotted cream)
Life is good. Davehttp://www.blogger.com/profile/04602485359462793611noreply@blogger.com0tag:blogger.com,1999:blog-7943634801511429047.post-16476594630149792012012-07-20T21:58:00.001+01:002012-07-20T21:58:58.323+01:00July update<script type="text/javascript">
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Hi there, I don't know where the time has flown.
I could be said that no news is good news and I have very little to report.
I've been able to manage the Crohns and can now recognise the onset of an attack. Tiredness and stress bring it on. The good news is that the diarrhoea has not returned. I've also worked out how to take the daily medicine (Pentasa) without leaving the tiny granules stuck to the glass or in my mouth where they taste..not a bad taste, but not one you'd choose to have in your mouth constantly.
The wet summer hasn't helped. A bit of sun can lift one's spirits, and in my case, a prolonged absence can bring on the blues.
After a particularly gloomy and tiring/tiresome weekend I rang my GP to ask for a blood test as I was feeling so drained. I wondered if my symptoms had returned. I had the blood test and contacted the Haematology Department at the hospital to ask if they could look at them (as well as my GP). They rang back to say that my blood tests were OK and I had nothing to worry about as far as they were concerned.
So, no news really. Life goes on.
Roll on summer!Davehttp://www.blogger.com/profile/04602485359462793611noreply@blogger.com0tag:blogger.com,1999:blog-7943634801511429047.post-81202202639319881192012-03-19T17:02:00.000+00:002012-03-19T17:02:15.170+00:00Crohns it is<script type="text/javascript">
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I received a letter confirming that I do indeed have Crohns disease. I've been prescribed a course of drugs and will see the specialist in three months or so.<br />
<br />
So far so good. Except that my symptoms have all but disappeared since the week before my last hospital appointment (about six weeks ago).<br />
<br />
I spoke to my GP about this. I still have to take the course. So if my symptoms don't recur (a 50/50 chance)- will that be down to the treatment or chance?<br />
If they do recur- does that mean the treatment isn't working?<br />
<br />
Surely I have to be having a flare up when I start treatment in order to prove the treatment works one way or the other?Davehttp://www.blogger.com/profile/04602485359462793611noreply@blogger.com5tag:blogger.com,1999:blog-7943634801511429047.post-61715980557868762872012-03-06T22:05:00.000+00:002012-03-06T22:05:26.240+00:00Self diagnosis may be a bad thing...<script type="text/javascript">
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Well I've had my colonoscopy and all that goes with it. Starting on Sunday when I had to cut out fruit, vegetables, cereals and red meat from my diet. It didn't leave a lot. On Monday I could eat some white bread so I had a couple of slices of toast in the morning before I started the prep procedure.<br />
Which is- drink a litre of some strange tasting liquid every hour- and stay near a toilet. I had in all 4 litres of the stuff that afternoon.<br />
This morning I had to go to the Endoscopy Unit for the procedure. Until then I hadn't felt hungry but I was just starting to feel a bit peckish when it was my turn to walk around to the operating theatre (I was pushed back in a bed).<br />
<br />
I won't go into the details of the operation, except to say it involves a camera and various other bits of kit being inserted into your bowel and then being pushed through the large intestine, taking photos and samples along the way. I was glad to be sedated as there were times when it was quite painful- as if you were full of wind- which I was.<br />
I won't get the results of the biopsy for a few weeks but the report the doctor gave me said that it was Crohn's Disease. You can read all about it here:<br />
<br />
http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001295/<br />
<br />
It certainly ticks a few boxes (and you need to have read the link- although I'm not Jewish or a smoker!)<br />
From the article<br />
"The exact cause of Crohn's disease is unknown. It is an autoimmune disorder. An autoimmune disorder is a condition that occurs when your body's immune system mistakenly attacks and destroys healthy body tissue"<br />
<br />
I'm immune compromised. I was advised not to eat shop prepared salads when I was originally diagnosed and I don't know if that includes pasta based ready meals that you can buy in any supermarket. When I was touring with Nicki Gillis last year I ate several of those and that may have triggered my symptoms, which included mouth ulcers, sore mouth and throat, and severe diarrhoea.<br />
Looking at the article again:<br />
"Crohn's disease may involve the small intestine, the large intestine, the rectum, or the mouth."<br />
<br />
I'm hoping to see my GP tomorrow and I will discuss this with him.<br />
In the meantime, I'm enjoying my food although I may need to adjust my diet if Crohn's is confirmed.Davehttp://www.blogger.com/profile/04602485359462793611noreply@blogger.com0tag:blogger.com,1999:blog-7943634801511429047.post-51737852761322113582012-03-03T22:01:00.000+00:002012-03-03T22:01:20.340+00:00March update<script type="text/javascript">
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Where does the time go?<br />
<br />
I've been working my way through the various out-patient clinics at the hospital. Last week I was at the Maxi-facilial clinic for the update on my nose operation. It appears that it was a cancerous tumour, but the surgeon is confident that he'd removed it all.<br />
Next week I'm having another procedure in the "underpants department" as the late and lamented Ray Moore might say. Yes, this time it's a colonoscopy, and I have to start preparing for it tomorrow. I have to change my diet and cut out fruit and vegetables, breakfast cereals, milk in tea, anything with fibre in it.<br />
Then on Monday I have to drink a lot of a liquid that will clear me out completely- and I won't be able to eat anything. Then on Tuesday I have the procedure.<br />
I hope that after all that they don't postpone it....<br />
<br />
The main health issue this winter has been a cough. I picked up a head cold in the middle of January which laid me low for a week. The head cold cleared up,leaving me with a cough. I don't have a chest infection- no wheezy bronchial breathing. I don't have a throat infection. Just a cough. I can still sing (just) and I don't seem to have lost any range or power, but every now and then I get a coughing fit. My lower abdomen hurts from the strain. I even coughed so much I vomited. What is it?<br />
<br />
I've been having this cough most years for at least five, if not ten years. If I sit still I'm OK. If I move position or have a sharp intake of breath, I cough. I don't cough in my sleep. I wake up and continue to lie flat without coughing. If I sit up, I start coughing. Once I start, I can't stop.<br />
<br />
Once I've recovered from my colonoscopy I shall be asking to have this cough investigated.Davehttp://www.blogger.com/profile/04602485359462793611noreply@blogger.com0tag:blogger.com,1999:blog-7943634801511429047.post-42477190287569096922011-12-26T12:25:00.000+00:002011-12-26T12:25:44.157+00:00The ugly truth<script type="text/javascript">
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First of all to anyone who drops in to read my news- may I wish you all a Happy Christmas.<br />
here's the update on my nose. As I may have recounted, it all started back in the summer when I had a spot on the end of my nose. Nothing unusual, except that this spot would not heal. I asked a doctor to look at it when I was at the skin clinic and he suggested I see a specialist. He told me it was a sub-basal carcinoma.<br />
This is what it looked like about a month ago.<br />
<br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi31XROLybLBh4Mj1hYekApEHuikYQpehGFhKTlaLDV0-59-yHYMzB6AHhK-5BfF0VwCt8VKqV0Esp4eIrDA9n6yZKhR4NNu96DuxL6n8ZIWLdPFmmkoU5dCVLwhj_DY-kwtqhkYYU7YXBE/s1600/Nose+1.jpg" imageanchor="1" style="margin-left:1em; margin-right:1em"><img border="0" height="320" width="259" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi31XROLybLBh4Mj1hYekApEHuikYQpehGFhKTlaLDV0-59-yHYMzB6AHhK-5BfF0VwCt8VKqV0Esp4eIrDA9n6yZKhR4NNu96DuxL6n8ZIWLdPFmmkoU5dCVLwhj_DY-kwtqhkYYU7YXBE/s320/Nose+1.jpg" /></a></div><br />
As you can see, it was tiny, but it looked enormous to me. There came a time when it was the only thing I could see when I looked in the mirror.<br />
<br />
I had an operation to remove it. This is what my face looked like a couple of hours afterwards.<br />
<br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiUrn6zehXQEwt9h3Hj86KTR0QLcgJUSL5VQl6uAYZW-Eb9FbTJyRFaXkfoIUUpH700UNRNaRufZHNO46ZRLTxk4Q7l72ubDDYmcRpYkihWnOq7lPMKhZQleCI-j6eCBtmz4o0m3LFLEPFx/s1600/Nose+2.jpg" imageanchor="1" style="margin-left:1em; margin-right:1em"><img border="0" height="320" width="252" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiUrn6zehXQEwt9h3Hj86KTR0QLcgJUSL5VQl6uAYZW-Eb9FbTJyRFaXkfoIUUpH700UNRNaRufZHNO46ZRLTxk4Q7l72ubDDYmcRpYkihWnOq7lPMKhZQleCI-j6eCBtmz4o0m3LFLEPFx/s320/Nose+2.jpg" /></a></div><br />
I had the stitches in for a week. There was a large red scab on the end of my nose for most of that week. At last I had the stitches out, revealing this:<br />
<br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh30JGBRYiLXWO3M6jzexw5DZq0nLwAGwNEGl1thOCIHj5BiWaAijjxdRvgWn9BcH1YgEPYfyy-LihMzR9DrteGa5E9nbn7b4YNmlEF5Mtt7iMnlc3ylg0D0lYy0g53dhkeP3zvCD7Woa8N/s1600/Nose+3.jpg" imageanchor="1" style="margin-left:1em; margin-right:1em"><img border="0" height="320" width="260" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh30JGBRYiLXWO3M6jzexw5DZq0nLwAGwNEGl1thOCIHj5BiWaAijjxdRvgWn9BcH1YgEPYfyy-LihMzR9DrteGa5E9nbn7b4YNmlEF5Mtt7iMnlc3ylg0D0lYy0g53dhkeP3zvCD7Woa8N/s320/Nose+3.jpg" /></a></div><br />
I have an appointment in a month or so when the surgeon will tell me the results of the biopsy. I suggest that if any of you have a mole that is getting bigger, or has an irregular shape or bleeds from time to time- get it checked out.<br />
<br />
It might just save your life.Davehttp://www.blogger.com/profile/04602485359462793611noreply@blogger.com0tag:blogger.com,1999:blog-7943634801511429047.post-74995387005322081832011-12-13T19:34:00.000+00:002011-12-13T19:34:51.838+00:00Minor ops etc<script type="text/javascript">
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I've said before that I'm slowly visiting all the clinics and departments in our hospital. The other week I had an appointment with a specialist to try and sort out my colitis. Since I came off tour with a severe throat infection and diarroea back in July I've had my appendix removed, had x-rays and a CT scan, and a procedure known as a sigmoidoscopy. I now know that I don't have diverticulitis, and that a biopsy of the areas of inflammation they could see have not revealed any clues.<br />
So I went to my appointment hoping for a successful diagnosis. I got some pills to take, and another appointment in the new year.<br />
<br />
I had an appointment today at the treatment centre to have a growth on the end of my nose removed. The doctor diagnosed a sub basal carcinoma- but when he looked again he's not so sure, so we won't know what it was until the biopsy result comes back.<br />
The operation went well. I sat back on the operating table, closed my eyes (the light was very bright so I had a swab to cut down the glare. The surgeon injected my nose with a local anaesthetic, and we chatted away while it took effect. All I could feel was my nose being pushed and pulled and before I knew it I'd been stitched and returned to the ward.<br />
I stole a look in the mirror. What a sight. My nose was a pale sallow white, with a lurid and bloody scar criss crossed with black stitches on the tip of my nose- which was swollen. Not a pretty sight.<br />
<br />
That should complete all my treatment until January, when I have a return appointment to check on my finger.<br />
<br />
All that remains is to wish you all the compliments of the season.Davehttp://www.blogger.com/profile/04602485359462793611noreply@blogger.com0tag:blogger.com,1999:blog-7943634801511429047.post-52971755692652740722011-11-24T13:03:00.000+00:002011-11-24T13:03:47.805+00:00November checkup<script type="text/javascript">
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I had my checkup a day or two ago and nothing much to report really.<br />
My blood results are good. My weight is steady. My other conditions are under control or in the hands of other specialist departments at the hospital. All good.<br />
<br />
I've been taking Aciclovir for a few months following my throat infection back in the summer. I've also been taking septrin for the last 16 months or so. These have both been discontinued, leaving me with a daily dose of allopurinol to minimise the risk of gout, and omeprazole to keep the acid reflux down.<br />
<br />
I played a celebratory gig with my band last night (www.facebook.com/daveclemo)and it went well. I was very tired from standing all night and so slept well. <br />
<br />
Sixteen months of remission. All good.Davehttp://www.blogger.com/profile/04602485359462793611noreply@blogger.com0tag:blogger.com,1999:blog-7943634801511429047.post-51974472126717121752011-11-13T21:00:00.000+00:002011-11-13T21:00:08.291+00:00November 2011<script type="text/javascript">
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It seems a long time since my last post. My Appendix operation has healed and the scars are faint; I've had a sigmoidoscopy which revealed some inflammation but the biopsy couldn't find anything. I'm still getting problems but nothing like as bad as before. I have an appointment to see a specialist next month.<br />
<br />
It seems that I've visited every department at the hospital. While undergoing treatment for CLL I had to see the eye specialist because of a bad attack of scleritis (which turned the whites of my eys to a lurid shade of red) That's currently cleared up, but my CLL specialist is keeping a watch on that.<br />
He kindly referred me to a skin specialist about a year ago because my right index finger was looking very sore. It was diagnosed as Bowen's disease, a pre-cancerous skin condition, and two does of Photo-Dynamic- Therapy has cleared that up for now, and although the skin still continues to crust up, the lesions have healed.<br />
<br />
I asked the skin clinic for treatment to rid my hands of some warts. They've blasted the warts with liquid nitrogen three times so far, but they're still there. It seems that my compromised immune system is allowing the virus that causes warts to thrive. I go back for a checkup after Christmas, so I'll ask for some more treatment then.<br />
<br />
When I had my last appoinment at the skin clinic, I asked them to look at a spot on the end of my nose. I still get the occasional spot (I had really bad acne as a teenager) and I think I had a spot on my nose back in the summer. It never healed but would continue to bleed from the scab. They decided that it was pre-cancerous so made me an appointment at yet another department.<br />
<br />
I had the appointment last week and was told that it was a basal-cell carcinoma, a type of skin cancer, so I will have a small operation in the coming weeks to remove it.<br />
<br />
So although my CLL is under control, there are a number of other issues to keep the doctors busy. I'm working my way through the various hospital departments, and getting to know people all over the hospital. To illustrate this I had to walk through a clinic area on my way out of the hospital last week, and all the staff knew my name.<br />
<br />
Is this a good thing?Davehttp://www.blogger.com/profile/04602485359462793611noreply@blogger.com0tag:blogger.com,1999:blog-7943634801511429047.post-37476191035253721662011-08-14T20:21:00.000+01:002011-08-14T20:21:11.777+01:00Sunday 14th August<script type="text/javascript">
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What a strange week. I was discharged last Monday and by Thursday my throat was so sore and my diarrhoea so bad that I just had to contact the Haematology dept again. My specialist arranged for me to be seen at the Surgical Assessment Unit at the hospital. They said I was to go right away and that they were expecting me.<br />
<br />
Wrong. They looked bemused when I turned up. I spoke to a nursing Sister and she sat me in a day room, effectively placing me into quarantine. I sat in the room in an uncomfortable chair from about 11 o'clock until tea-time. Someone brought me a cup of tea from time to time and I was given a sandwich to eat. It was agony to chew and swallow, but I was so hungry. <br />
Eventually I found myself back in the side room I'd vacated a couple of days previously. Two hours previously I was asked what I'd like for dinner. At the third time of asking it finally arrived and I tucked in during visiting time.<br />
During the evening the duty doctor called around and asked me some questions took some blood. It was quite hard as my veins had taken quite a bashing over the previous week. She tried to fit a canulla without success. <br />
<br />
That night I lay in bed and tried not to listen to the sounds of grieving parents in the room next door. Their young child had died in their arms.<br />
<br />
The next day came and went. I managed to provide a stool sample which confirmed the absence of any of the known causes of diarrhoea, as had all the others. <br />
<br />
The Haematology team put in an appearance at my bedside and we discussed my symptoms and the possible causes and remedies. They requested that a viral swab be taken of my mouth and throat, as once again the previous tests had eliminated all the usual suspects. No candida, heliobacter, etc etc.<br />
<br />
One of the team made a very useful suggestion- apply Bonjela to my tongue. So I did, and it helped. I continued to eat everything placed before me in the hope that my "output" would become more substantial and not be just a runny mess of damp farts.<br />
<br />
I was visited the next day by two members of the surgical team who said that they could do no more for me at this time. I'd only been called in because I needed a colonoscopy, and it appears they won't do one until six weeks after my operation. I was fed up, tired, bored, missing my home comforts, and ready to leave that minute, but I still needed the approval of the Haematolgy dept.<br />
<br />
They didn't call in to see me until mid-afternoon. I was also waiting for a prescription but the doctor decided that this could wait until after my out-patient appointment next week. So I got dressed, picked up my discharge letter and went home.<br />
<br />
In all the time I was there I wasn't officially admitted. I never recieved a name tag with my details on it. I never received my first discharge letter either. I think there is a reason for this. NHS rules state that if a patient is readmitted for the same reason within a certain time frame, then the hospital is fined.<br />
<br />
Perhaps by holding back my first discharge letter and not "readmitting" me after I'd been home for two days they might be trying to make it appear that I'd been there all along.<br />
<br />
Davehttp://www.blogger.com/profile/04602485359462793611noreply@blogger.com0tag:blogger.com,1999:blog-7943634801511429047.post-8491441734823016642011-08-08T18:38:00.000+01:002011-08-08T18:38:48.355+01:00Mon 8th August 2011<script type="text/javascript">
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Having gatecrashed the haematology clinic last Monday in order to see my specialist, and having taken all the medicines prescribed, it was clear that nothing had changed and that all was not well. On Thursday I contacted the clinic again and was called in to see my specialist in a side room.<br />
<br />
The tests had confirmed that I hadn't contracted candida or any of the usual throat infections. I'd also started getting a sharp pain in my right groin. My specialist decided that I needed to be brought in for observation and treatment. He spent long hours organising a bed for me on a medical ward and I finally moved there in the late afternoon. Unbeknown to me the hospital was full- chocka- and everyone was at full stretch. I had a terrible time getting admitted and going for tests. I was supposed to be put on a drip. This didn't happen for at least four hours. The canulla fell out in the middle of the night......<br />
<br />
The next morning (Friday) was no better. I went for a CT scan and instead of being hooked up to my drip upon return (I was on nil-by-mouth) it took almost three hours and a lot of shouting before it was done. Then a surgeon arrived and said they would be taking my appendix out - hence the nil-by-mouth.<br />
<br />
The operation went well. I was transferred to another ward to recover- one without a view from the windows. I had very noisy neighbours as well. I made a good recovery and they were going to send me home two days ago- but for the involvement of the haematolgy department. <br />
<br />
Sunday came and went. My mouth developed blisters and I struggled to eat or swallow anything. I was off the drip, apparently able to take in enough food and liquid for myself. It was plain that I was not.<br />
<br />
Today (Monday)both the surgical and haematolgy teams agreed I should be discharged. So I was taken downstairs to the lounge ready to be picked up. <br />
<br />
Not so simple. I still had to wait over two hours for my prescription drugs to be made up.<br />
<br />
In all this, my specialist, probably the only Consultant at the Hospital who would take time to do this, called in explained what was going on.<br />
<br />
There is a possibility that although my appendix was inflamed, it wasn't the cause of my diarrhoea (which I still have although I haven't eaten enough to be sure)<br />
Later this week they will insert a camera into my bowel and take images and samples in order to identify what is wrong. It could be diverticulitis but my continuing throat infection, ulcers et al, would say not.<br />
<br />
But what is it? Time and more tests will tell.Davehttp://www.blogger.com/profile/04602485359462793611noreply@blogger.com0tag:blogger.com,1999:blog-7943634801511429047.post-22437346046295309592011-08-04T09:12:00.001+01:002011-08-04T09:19:06.109+01:004th August 2011<script type="text/javascript">
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I've not posted for a few months because there's been nothing to report- until now.<br />
<br />
The last time I went to see the specialist back in June he gave me a clean bill of health. Because of my tendency to attacks of gout after eating liver (one of my favourite foods)he prescribed allopurinol. I have to take it at a specific time of day and such is the nature of my current lifestyle I've not been able to take them regularly.<br />
<br />
Nicki Gillis arrived at the end of June for a four week, twenty one date tour. Last year I suffered badly from mouth ulcers but survived, having spaced my chemo treatment on either side of the tour. This year I have not been so lucky.<br />
<br />
The first thing to go was eating regularly. I made sandwiches and bought supermarket pasta and ate as much fruit as I could, but I couldn't maintain my regular drug intake. First to go was the allopurinol, then the co-trimoxazole. I started getting mouth ulcers within a day or two of starting the tour, but it was nothing I hadn't handled before.<br />
<br />
Nicki was offered two more shows, plus a TV interview and about six radio shows (of which I played on two). This meant that on the third week of the tour we had eight shows in seven days, spread out right across the country. <br />
<br />
We started in Widnes (near Liverpool, then travelled overnight to North Devon where we stayed in a caravan and played a show. We slept during the day, played the show and then slept overnight before driving back up to Derbyshire. I think it was then that I started to get ill. The rest of the week involved even more travel. On Friday night we were just outside Doncaster. On Saturday afternoon we were near Evesham and on Saturday night we were in Corby. By now I had constant diarrhoea but was able to get through the shows. <br />
<br />
The final week saw us play most nights. Immodium kept the diarrhoea at bay but my sore throat got worse and worse. I managed to eat Sunday lunch with Nicki and Tracy (her manager) before they returned to Australia, but since then I've felt really ill.<br />
<br />
I had an appointment to have treatment on my finger last Monday, so I gatecrashed the Haematology clinic and persuaded them to examine me briefly. I had a mouth swab, blood test and gave a stool sample. My specialist prescribed a mega-dose of aciclovir (5 pills a day instead of the normal two) plus a double dose of fluconazole in an effort to clear up my throat and as I write, I'm waiting to hear back from them.<br />
<br />
I've hardly eaten a thing since Monday as my tongue is too painful to chew and my throat too sore to swallow. I did manage to sip my way through a cold can of chicken soup yesterday, but couldn't manage half a plate of scrambled eggs at teatime. I recall that my weight about a month ago was about 105Kg. It's now 98Kg and dropping.<br />
<br />
I hope they are able to diagnose what's wrong soon.<br />
<br />
This looks like the end of my professional touring career. I can't afford to place my health at risk any more.<br />
<br />
UPDATE- I have an appointment at 12.00 to see the specialistDavehttp://www.blogger.com/profile/04602485359462793611noreply@blogger.com0tag:blogger.com,1999:blog-7943634801511429047.post-84891882833036629522011-05-07T21:58:00.000+01:002011-05-07T21:58:00.821+01:00May 7th<script type="text/javascript">
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It's a few months since I last posted, but no news is good news. The treatment on my finger seemed to work(see my last post)and I'm about to start a course of cream to get the bits that didn't get the full treatment. It'll take six weeks and I'm told it might be painful, so I'm putting off starting it until tomorrow.<br />
<br />
What else? I'm still at work three days a week and as long as I manage myself and don't do too much I'm OK. I'll be going back to work full-time in September when the student I'm job sharing with goes off to Uni.<br />
<br />
I've got a new band and we're out playing the local open mike nights as featured artist. I'm really enjoying this. The band are all friends and we're having a good time entertaining the audiences. We'll be making a showreel soon and pushing a few doors to get some paid work.<br />
<br />
Paid work. I was better off when I was on the sick. My critical illness insurance took care of the mortgage and I wasn't spending anything. However they only pay out for one year. I was glad to get back to work, but working three days a week instead of five means I'm only earning 60% of my previous salary (which was way below the national average in any case).<br />
<br />
In about two months time (God willing) I'm back on tour with Nicki Gillis and I just know we're going to struggle because the venues just aren't (or can't) pay anything like a fair rate for a four piece band. We've air fares, hotel bills and diesel to fork out, so there won't be much left for paying household expenses....<br />
<br />
Never mind. I'm in a much better place than I was 18 months ago. I'm fit (ish), healthy (ish) and all my teeth are paid for. (I went to the dentist who scored my teeth at 82%- whatever that means). He then said I have to have a crown replaced. That sounds expensive if you ask me.<br />
<br />
Life is good.Davehttp://www.blogger.com/profile/04602485359462793611noreply@blogger.com0tag:blogger.com,1999:blog-7943634801511429047.post-51733396436049926392011-02-15T13:00:00.002+00:002011-02-15T13:05:40.495+00:00First three monthly check up<script type="text/javascript">
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It's been a while since my last post. I'm getting back into the swing of things. I'm still not fit enough or strong enough to work full-time (will I ever be?) and I still get tired, but hey, I'm a lot better than I was.<br />
<br />
Last week was notable for two things. Firstly I had my three monthly checkup and the doctor is happy with the blood tests. He'll keep me on Co-Trimoxazole for another three months and that's it. I did mention that I had an attack of gout after eating too much liver and he said he'd ask for further tests on my blood. If the uric acid levels are up he'll write to my GP and get him to prescribe some allopurinol. I enjoy food like fish and liver. It would be a shame to have to stop eating it.<br />
I've also been having treatment for the skin condition on my finger. I've had this patch of scabby, scaly skin on my index finger for years. During the winter the cold gets into the fissures and it's painful. I was referred to the dermatologist at the hospital who carried out a biopsy. This revealed that it was Bowen's disease, a pre-cancerous skin condition.<br />
A couple of weeks ago they called me in for some Photo Dynamic Therapy. Basically they cleaned the skin, removed the scabs and covered the affected area with a cream. This was left covered up for three hours and then a bright red light was shone on it. The procedure was carried out by a nurse. We both had to wear cool shades for the seven minutes that the light was shone on my finger.<br />
The first time the procedure was carried out it was a bit prickly and painful on the affected area. Because it was light and not heat, the rest of my hand was unaffected. I was sent home with a throbbing finger which was painful for a couple of days and which scabbed up again.<br />
The next week the procedure was repeated, but this time it really hurt. It was like holding a lighter to your skin for seven minutes. The nurse spayed cold water on my finger to try and ease the pain. We talked about anything and everything. Anything to take my mind off the pain in my finger. This was truly the most pain I've endured for a long long time.<br />
But I endured it. The dressings came off after a day or so and as I look at my finger now the skin is healing and the scabs are dropping off. There's still a patch where the light couldn't reach so I may need another dose in a few months time, but it will be nice to shake hands without an unsightly mess on my finger.<br />
<br />
I said two things. I meant three. I must be getting back to normal because I have regained my appetite for tackling some outstanding problems at work. Software installations, updating records, researching and problem solving. All back on track.<br />
<br />
And another thing. I had my hair cut to celebrate going into remission. That was three months ago so I had a couple of inches cut off to maintain the look.Davehttp://www.blogger.com/profile/04602485359462793611noreply@blogger.com0tag:blogger.com,1999:blog-7943634801511429047.post-90468296443945117542010-12-05T19:32:00.000+00:002010-12-05T19:32:55.147+00:00Gout<script type="text/javascript">
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When I started having treatment for CLL about 15 months ago I was given a prescription for Allopurinal in order to prevent an attack of gout. Apparently it's common for the chemo to affect the kidneys and prevent them dealing with uric acid, which then settles in your joints, normally the big toe or knee, causing swelling and pain.<br />
After three months or so the drug was discontinued, as the risk of getting gout was reckoned to be negligible by then.<br />
<br />
So how come I had an attack this week? I can only assume that it was gout, as the symptoms line up exactly. So what caused it?<br />
<br />
Let's go back to Thursday.I had a shower and during the evening I could feel an itching between my toes exactly like an outbreak of athlete's foot. I pulled off my sock and checked. Yes, the skin was cracked so I applied some cream. The next morning my foot hurt. It felt like someone was pulling my big toe off my foot, in the same way that one would tear a wing or leg from a cooked chicken. The joint was swollen and it hurt to put my foot on the ground. I hobbled around during the day and in the evening took to my bed to read my book.<br />
<br />
I had a brainwave. Could I be suffering from gout? I'd all but forgotten about the course of drugs I'd had the previous year, but I thought I'd Google "CLL and gout" and see what I could discover.<br />
<br />
I discovered that gout is indeed a possibility to anyone who has had chemotherapy. But what brought it on?<br />
<br />
I continued looking.<br />
<br />
Some foods can cause an attack of gout, including liver. I love liver and onions and we eat it most weeks without a reaction. Then I remembered. I'd bought a larger than usual pack of liver from the local shop and it was far more than we usually eat, so I served three portions instead of two and I ate the second portion on Wednesday night (after eating it on Tuesday as well).<br />
So it seems I could eat one serving of liver without any ill effect but not two.<br />
As I write this I still have to speak to the specialist (rather than my local medical centre- I never see the same GP twice and it's such a pain to have to go through my story every time I make an appointment. The poor GP's eyes glaze over before he/she even examines me, and often they just don't have the specialist knowledge anyway.)<br />
<br />
Once I've spoken to a doctor I'll know the way forward. There are two ways to deal with it. The first is a course of anti-inflammatory drugs to reduce the swelling, followed by a course of allopurinol.<br />
<br />
The second is much harder. It involves a complete change of diet, and that would be very tough for me. Cutting out alcohol is easy. I've been teetotal for years. Alcohol is not the cause of my gout. I'm pretty certain that it was eating liver twice in one week that caused the outbreak.<br />
<br />
There are a number of lists of foods that are said to cause/aggravate gout. The trouble is (twofold in my case) that the lists are different. <br />
For instance, liver appears on one list but not on another.<br />
Cutting out kidney and other offal won't be a problem, but I like liver, so boo.<br />
Cutting out sardines, mackerel, trout cod and salmon will be ok. But haddock? <br />
I love haddock, much tastier than cod. <br />
Red meat is a no-no, along with gravy.<br />
Shellfish is out, along with anchovies.<br />
Even turkey gets the thumbs down.<br />
<br />
Why is it that all the food that has taste is barred?<br />
<br />
How come cauliflower is barred, along with spinach, but cabbage, kale and other leafy vegetables are ok?<br />
<br />
Oatmeal is out- so no more porridge or muesli.<br />
Whole grains are out. So much for healthy alternatives.<br />
White flour is out as well.<br />
<br />
The only good news is that chocolate is good for you. So are strawberries, raspberries and cherries<br />
<br />
I eat what I consider to be a good diet. Mostly plain food, nothing spicy. certainly nothing that my grandmother wouldn't recognise. I'm not a foodie.<br />
<br />
Even so, having a good percentage of my limited diet ruled out is a bit of a piss-off, to be frank, so I'm going to go down the drug route to clear the gout up, and then remember not to eat too much liver at one (or two) sittings.Davehttp://www.blogger.com/profile/04602485359462793611noreply@blogger.com1tag:blogger.com,1999:blog-7943634801511429047.post-83195055443470239372010-11-20T17:01:00.000+00:002010-11-20T17:01:00.915+00:00Saturday Nov 20th<script type="text/javascript">
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<br />
It's three weeks since my last post. Three weeks of working three days a week. So what's new?<br />
First of all I finished taking Aciclovir this week. My specialist said to finish off the supply and then continue taking Co-Trimoxazole three times a week only.<br />
I can just about remember that. On work days I take my pills. Simples.<br />
<br />
How do I feel? Well, I'm coping at work, except for my back and neck problems.<br />
I've had arthritis in my neck for a few years and this is the time of year when it plays up. Add in a severe lower back pain and I'm immobile if I have to stand for more than a few minutes. Luckily my job is desk-bound.<br />
On Fridays I have to take the post to the DX and main Post Offices. This involves a walk around the town centre and by the time I get back to the office I'm all in.<br />
I've also gone shopping afterwards and by the time I get home I'm exhausted.<br />
Yesterday I was able to go home without doing the shopping but even so I slept for twelve hours.<br />
So I have a severe lack of stamina coupled with pain in my neck, pain in my lower back, both of which add to my not inconsiderable grumpiness. I hate this time of year, with its cold, its damp, and short days. Roll on next May!<br />
<br />
I have started singing again. I sang three songs at a local Open Mike night two weeks ago (repeated again this week),and was approached with a view to rehearsing with a country/rockabilly band. So I've rehearsed with them twice. I'm not sure it'll come to anything. I have my own plans.<br />
<br />
Last Saturday I was invited to open for Paul Wheater at a local church. I played for about 35 minutes and went down well. I have another appearance lined up in a church in Rushden next Saturday. These spots will keep me ticking over during the winter, weather and colds permitting.<br />
<br />
Next week I will see my GP, touch base and arrange a repeat prescription for my drugs, and discuss what to do about the various aches and pains.<br />
<br />
All in all, it's a much better place that I was in last year.Davehttp://www.blogger.com/profile/04602485359462793611noreply@blogger.com0tag:blogger.com,1999:blog-7943634801511429047.post-4981766890374959672010-11-02T16:21:00.000+00:002010-11-02T16:21:10.471+00:00Nov 1st 2010- into remission<script type="text/javascript">
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My date for my appointment finally arrived after several days of hypochondria-like symptoms. I imagined every ache and pain as symptoms of something worse. I had difficulty getting off to sleep, especially lying on my left side (where my spleen is situated). A few months ago the effects of the CLL had caused it to swell up, making it hard to lie on, and now...was I experiencing this again?<br />
<br />
Anyway, I went to the hospital and had my blood test. When I turned up at the clinic we discovered that our parking permits were out of date,and we were no longer able to park in our usual place. Sue moved the car to the main car park (where we have to pay the full fee)and it was not a moment too soon as a car park warden came into the clinic asking people to move their cars. Half an hour later he issued parking tickets.<br />
<br />
That bit of excitement over, we were called in to see the specialist. I was weighed and asked if I'd had any problems. He was unconcerned about my inability to lie on my side because he had good news. The last bone marrow tests failed to find even the tiniest trace of CLL in my bone marrow, meaning that the treatment had been successful and that I was now in remission.<br />
<br />
My immune system is still compromised, and will be for some months yet, and I will have to continue with one of the drugs- and I must have a flu jab, but other than that, it's all good.<br />
<br />
I will have to go back to see him in three months time, and every three or four months from then on.<br />
<br />
I took my prescription to the pharmacy and was told to return in 30 minutes. We then called into the hospital hairdressers in the main entrance area. Our son's girlfiend's mother works there,and she trimmed about four inches off my hair and generally tidied it up. I'd refused having anything done to my hair until I was in remission and it was getting too long.<br />
<br />
We then went to the car and drove towards home.<br />
<br />
It was then we remembered my prescription. First of all we called into the new Asda in Kettering to buy a pair of work trousers ready for tomorrow, then drove back to the hospital. Sue dropped me off then drove to a Warehouse style retail store opposite the hospital. I collected the prescription and walked over to the store where I bought a 2011 diary, and Sue bought a few things.<br />
<br />
The shopping came to £8.88 and as we left the store I said "The parking was a bit expensive, but at least you get a free bag of shopping!"<br />
<br />
Then it was off home for lunch together. Sue went back to work and I wrote some emails and posted the news on Facebook, and then made a couple of phone calls.<br />
<br />
Back to work tomorrow.Davehttp://www.blogger.com/profile/04602485359462793611noreply@blogger.com0