tag:blogger.com,1999:blog-73770546948079414372024-02-06T19:17:18.338-08:00Me and My FriendJohn Dayhttp://www.blogger.com/profile/14893236427221957675noreply@blogger.comBlogger79125tag:blogger.com,1999:blog-7377054694807941437.post-779007298847555872013-02-13T06:51:00.000-08:002013-02-13T06:58:20.781-08:00Last day (2) or so long, fair well, Auf wiedersehen, goodbye<div class="separator" style="clear: both; text-align: center;">
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<b>February 14 1983-February 13 2013.</b></div>
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That's it today I have completed 30 years, 16 years with Kent Fire Brigade and 14 years with London Fire Brigade. My time in the Fire service has been, in roughly equal portions, challenging, hilariously funny and humbling. Along the way I have made some great friends who I will stay in touch with (not least because they owe me money!). I consider it to have been a privilege to been part of this organisation and to have served the community for so long. </div>
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My only regret is that I wished I looked cooler in uniform.</div>
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I have returned all the accoutrements that went with my rank, the only thing I have to do now is get the siren taken out of my car; much to the disappointment of the kids. This and the blue light may have proved handy in traffic in the future but the potential resulting penalty for being caught with it probably isn't worth the few extra minutes saved on any journey.</div>
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This entry will be my last as my sojourn through cancer treatment conveniently coincides with the end of my Fire service career, allowing me to wrap up both in one neat package. On the recovery front I continue to feel better, the scar where my stoma was has healed remarkably well, I've decided to tell people that this is where I was "nipped" by a shark whilst surfing. No one outside the family (and anybody who reads this blog) will know the truth. I still, occasionally, feel uncomfortable in my bowel but this is receding and seems to be worse if I push myself physically but I'm still only 3 weeks out of surgery so to grumble seems a little trite. </div>
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I feel I can tentatively say that I am out of the woods with regard to suffering with cancer and that the treatment has been successful. I hope, in some way, that this blog has been of interest/support/reassurance to anyone in a similar predicament to me, on that note I would direct said people to Cameron Von St. James' Face book page his wife, Heather, has overcome an even more fearful form of cancer and may prove inspirational to fellow cancer sufferers. I genuinely feel that there needs to be a more positive public approach to and awareness of cancer treatment, for many there is life after being diagnosed and treated. This may necessitate a paradigm shift but it doesn't mean the end of all things.</div>
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And so to thank yous; Primarily to Stella, when I faltered she has always been there to carry me, indeed, she is truly my 'rock' without her and the support of a loving family this episode would have been bleak in the extreme.</div>
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To: Mr. Charles Bailey, Consultant colorectal surgeon with Maidstone and Tunbridge Wells NHS trust.</div>
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Bronwyn Tetley & Frances Chalklin, colorectal nurses.</div>
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Maggs, Cathy, Kirsty & Judy, stoma nurses</div>
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Dr. Jeff Summers Consultant clinical oncologist Maidstone and Tunbridge Wells NHS trust.</div>
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All the staff of LA5 and 6 radio therapy unit.</div>
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All the staff on Charles Dickens, Pye Oliver and Lord North wards at Maidstone hospital.</div>
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Mr. Mark Gudgeon, Consultant colorectal surgeon with Frimley Park hospital.</div>
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All the nursing staff at Frimley Park hospital.</div>
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Dr. Cathryn Lay, GP Amhurst medical practice.</div>
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Thanks to all these people Stella, the family at large and me are looking forward to a very much brighter future.</div>
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I am now about to enter a phase of follow up check ups which will continue for the next 5 years and then on until I'm 75, very reassuring. It probably goes without saying but I am definitely an advocate of the National Health Service.</div>
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Over and out.</div>
John Dayhttp://www.blogger.com/profile/14893236427221957675noreply@blogger.com1tag:blogger.com,1999:blog-7377054694807941437.post-12145578227620028622013-01-31T02:05:00.001-08:002013-01-31T02:05:55.181-08:00A week onThe pain and soreness has subsided massively in the last few days. My trips to the toilet are becoming more regular although last evening was uncomfortable for a while feeling like I urgently needed the toilet constantly over a period of about 3 hours. I liken this phase to getting into a rowing boat, initially its unstable and feels like it'll capsize but once you start to row the boat becomes more stable and controllable. Whilst in hospital the colorectal nurse explained the need to relearn control of my bowels and that it would take a little time. That said I am amazed at how good I generally feel, I have to remind myself not to pick up anything heavier than kettle, a handy excuse for doing nothing but relaxing.<br />
I am currently trying on all the clothes that I couldn't wear with my 'bag', its like discovering a new wardrobe! Although I seem to have put on frightening amount of weight in the last 18 months I can still squeeze into my jeans so I won't need to go through the <i>"are you sure the size is right on these ?" </i> conversation.<br />
My GP has signed me off sick for a month from today which essentially means I won't return to work, later this week we will ceremonially dispose of 30 years of accumulated tee shirts, shirts, trousers, socks, belts and associated work detritus. John Dayhttp://www.blogger.com/profile/14893236427221957675noreply@blogger.com1tag:blogger.com,1999:blog-7377054694807941437.post-30267049054010521012013-01-28T07:04:00.001-08:002013-01-28T07:04:03.937-08:00Conventional toilet habitsWiping your bottom! What's that about?<br />
Stella picked me up from hospital on Saturday, which was nice as it was Martha's birthday so I could join in the celebration. Writing this today (Monday) I almost feel back to normal the pain from the operation has subsided considerably, I am , however, using paracetamol and ibuprofen fairly liberally but I genuinely feel more comfortable than I thought I would. I went the get the surgical wound redressed today and that looks fine if a little puckered, I'm to go back to the local surgery on Friday to have it checked again and was told to look out for signs of infection although it looks and feels fine. I 'm going to be left with a reasonably impressive dueling scar when all is healed.<br />
The night after the operation I experienced unbelievably uncomfortable wind which kept me up most the night my consultant asked about it when I saw him the next day telling me it is common after a reversal and akin to a baby getting gripe. That passed and slowly my 'movements' have been returning to the more conventional, relearning something that you have done for the best part of 50 years is harder than I thought but even that seems to be improving rapidly.<br />
As an aside I had a shower this morning, my first in 18 months where I didn't have to 'project plan' the whole process with regard to removing and replacing the colostomy bag. I felt at quite a loss with the extra time I had!<br />
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Stella and I have got to get away when this is all finished.John Dayhttp://www.blogger.com/profile/14893236427221957675noreply@blogger.com0tag:blogger.com,1999:blog-7377054694807941437.post-24907079034016830012013-01-24T23:02:00.000-08:002013-01-24T23:02:01.556-08:00Looking good!<div class="separator" style="clear: both; text-align: center;">
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Here's John the morning after surgery. I'm not sure I'll let him get away with shorts, socks and sandals once he's out. He's being allowed to drink freely and is being fed on very high calorie Ensure drinks at the moment along with jelly, ice-cream and soup. More solid foods will be gradually re-introduced.John Dayhttp://www.blogger.com/profile/14893236427221957675noreply@blogger.com0tag:blogger.com,1999:blog-7377054694807941437.post-39147546202004036212013-01-23T14:04:00.001-08:002013-01-23T14:04:20.585-08:00The Longest Day (written by Stella)I started writing a very long, boring account of our day but to cut a long story short....John's op took place at about 5pm this afternoon. All went well. When I phoned the ward at 8.15pm I was told he was up on the ward and was feeling nauseous. I sent my love. Nothing more I could do. Thank God it's all over. Over and out. StellaJohn Dayhttp://www.blogger.com/profile/14893236427221957675noreply@blogger.com0tag:blogger.com,1999:blog-7377054694807941437.post-16524247671973750362013-01-20T11:53:00.000-08:002013-01-20T11:53:03.725-08:00Last day 1<div class="separator" style="clear: both; text-align: center;">
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This week saw the last time I will wear this uniform, gloves optional. I will be in hospital this week, weather permitting, and will probably be sick until my actual last duty day. It all seems like it rushing up on me and Stella now, some tidying up administration to do this Monday and Tuesday and hospital early Wednesday morning.John Dayhttp://www.blogger.com/profile/14893236427221957675noreply@blogger.com1tag:blogger.com,1999:blog-7377054694807941437.post-48375033052101290752013-01-11T02:38:00.000-08:002013-01-11T02:38:38.094-08:00New Year rushReceived written confirmation of my pre-op date and the operation date yesterday, 16th and 23rd January respectively, in the words of Will Smith and Martin Lawrence <i>"This shit just got real!"</i>. Although in truth it's been<i> real </i>for quite some time.<br />
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What with the operation, three birthdays coming up and imminent retirement this part of the year, generally a quiet time, seems manic at the moment. We have also decided to buy the lease car I have had for the past 3 years, it has proved to be all the family car we need, although we still have a hankering for another old VW bus (we've had two)I think that is just the 'Hippy' in both of us.<br />
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We are becoming quite the theatre goers, we have booked tickets to see <i>Much ado about nothing </i>at the Old Vic for later in the year. This is significant because I have held off making commitments too far into the future, I think this is a sign of my renewed optimism.John Dayhttp://www.blogger.com/profile/14893236427221957675noreply@blogger.com0tag:blogger.com,1999:blog-7377054694807941437.post-20742614947909940012013-01-06T14:11:00.001-08:002013-01-06T14:14:34.027-08:00Twelfth night 53 today, Martha's card from last year can be 'recycled' today. had a relatively quiet day today most of the kids visited, went for a walk in Knole Park with Hannah, Mark, baby Sophie and our 3 youngest.<br />
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Christmas has been a busy period for the Day household we have visited, been visited, went to the pantomime and I took Gabriel to his first adult comedy night at our local theatre, the Stag. I actually did get out on my mountain bike before the end of 2012, twice! I went further each time and did more off road riding than I thought I would be up to.<br />
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Stella treated me to a meal at <i>Joe Allens </i>and we went to see Simon Callow in his one man rendition of a Christmas Carol for my birthday. It was a brilliant evening, prior to collecting our tickets from the box office we found ourselves behind Simon. Stella asked him to sign a programme which he obligingly did, top bloke!<br />
But Simon where were the songs?! (Muppet's Christmas carol reference).<br />
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Generally I feel more healthy daily, the numbness in my fingers and feet also seems to be subsiding although I still struggle with shirt buttons and picking small items up from a flat surface, not end of the world stuff but irritating just the same. I am going to give some blood tomorrow for the research programme I mentioned earlier, I was advised not to do it before the Christmas break (the sample may be left and deteriorate in the break) by the research team at the oncology centre.<br />
We met up with my surgeon on the 27th December, I signed the consent form for the reversal surgery and it looks as though I will be going in on the 23rd January, just in time to recover and retire from the Fire Brigade.John Dayhttp://www.blogger.com/profile/14893236427221957675noreply@blogger.com0tag:blogger.com,1999:blog-7377054694807941437.post-63119088643393790322012-12-18T13:10:00.001-08:002012-12-18T13:18:27.962-08:00Joyeux NoelWent to the Kent Oncology Centre yesterday to get the results of the CT scan, the waiting area was packed, who would have believed that an oncology centre could have a Christmas rush!<br />
Stella and I waited about an hour and a half to see the consultant; as we walked into his office he shook our hands and said <i>"the scan is clear" </i>, fantastic news that is only sinking in this evening. The consultation took all of 5 minutes, he discharged me from the oncology department and, as a parting gift (?), sent me for another blood test.<br />
I will have to have a blood test every 6 months and a scan annually, a small price to pay for peace of mind.<br />
Only one hurdle left between me and a surf trip, surgery and recovery in the New Year, I'll wax my board.<br />
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I have volunteered to take part in a research programme looking at the genetic structure of people who have suffered with (bowel) cancer, I feel I want to be involved in the struggle against this terrible disease.<br />
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In other news, Stella and I went for a Christmas meal at 'The butcher and Grill' in Battersea with friends from work last night. This proved to be a good way of celebrating our news, we didn't get to bed until 1 o'clock in the morning, far and away my latest night for a long time.<br />
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The world suddenly looks a brighter place.John Dayhttp://www.blogger.com/profile/14893236427221957675noreply@blogger.com3tag:blogger.com,1999:blog-7377054694807941437.post-73804903269629692062012-12-07T03:03:00.003-08:002012-12-07T03:27:14.873-08:00Movin' onA fortnight ago, Stella and I went to Birmingham to see Steve Harley (of Cockney Rebel fame for those of a certain age) I'm not a massive fan but Stella has stalked this individual since 1974! All that said the concert was exceptional and well worth the visit. The weather was atrocious and this had direct impact on the numbness in my hands and feet, this condition is very temperature sensitive and is noticeably improved in warmer times.<br />
I had the official result of the contrast enema last week, the wound site is healed and healthy. Very good news and although this is what I expected every test brings it's own trepidation, on that note I also had the CT scan on the 12th which I'll get the result from on the 17th, as I say its the waiting for results that is the hardest part. Although I'm confident that the CT scan will prove as positive as previous tests there is always a nagging doubt.<br />
Despite the fact that I told the CT operative when she asked that I'm allergic to the sight of blood, especially my own, she couldn't resist telling me that <i>" we had a gusher" </i>when she tried to insert the cannula in my arm. Fortunately I was already laying on the scanner's bed with my feet slightly raised!<br />
Also in this last fortnight I have been walking a lot more, pushing out the distance and terrain, I can see a definite improvement in my personal fitness and go for a punishing cross country walk at least once a week. I'm not up to cycling yet but my mid term aim is to get out and do some miles on my mountain bike before the end of the year.<br />
We have a meeting with my surgeon on the 27th to pin down a date for the operation to close my stoma and repair the hernia, this will be a truly welcome Christmas present.John Dayhttp://www.blogger.com/profile/14893236427221957675noreply@blogger.com0tag:blogger.com,1999:blog-7377054694807941437.post-42878876410219903932012-11-06T08:11:00.000-08:002012-11-06T08:11:15.249-08:00Ouch!The title sums up my enema experience, it was as uncomfortable and a little less than dignified which is to be expected. However, some very good news, the doctor told me that there wasn't any obvious leak from the wound site. This is significant as any leak would complicate further surgery.<br />
Next stage is the CT scan of my chest and liver in December, surgical consultation with surgery hopefully early in January.<br />
I'm actually looking forward to 2013 (and still praying that the Mayans are wrong).John Dayhttp://www.blogger.com/profile/14893236427221957675noreply@blogger.com0tag:blogger.com,1999:blog-7377054694807941437.post-29448026328947161312012-11-05T04:04:00.000-08:002012-11-05T04:04:12.369-08:00Plus one weekOne week on from completing my chemo and I'm feeling pretty well all things considered. We went to France for the half term, the Somme, returning this weekend, we were very lucky with the weather and had mostly clear sunny days. This break was in complete contrast to the one we had in June in Devon, it was very relaxing, we ate at some very pleasant restaurants, took a trip on a hundred year old steam train and generally had a very easy time. We went back to St Valery Sur Somme where the kids took these photos:<br />
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This bar is same one that I am having a coffee in at the beginning of this blog before I started on this journey, I have to say I feel much better in these photos than I did in that first one. I'm still sensitive to the cold and my feet and fingers still feel numb but this seems to be receding slowly.<br />
My toilet habits are becoming more normal, that's to say I only have to empty my 'bag' 2 or 3 times a day. While I was receiving chemotherapy this could be up to 6 or 7 times a day with regular trips to the toilet throughout the night. Overall I'm pleasantly surprised at how quickly the side effects of the chemotherapy subside and am looking forward to the continued return to normality. The most frustrating things I get annoyed with ( I'm not a tolerant patient) are how weak I still feel generally and the imposition of the hernia (site of the stoma) on my movements and the uncomfortable fit of my jeans. Small beer I suppose but annoying just the same.<br />
This week I have the particularly unpleasant prospect of a <i>'contrast enema'</i> , words that can strike fear into the most strident heart, this is to check the site of the tumour surgery to ensure that there isn't any leakage and that the wound has healed. I should be pleased because this is the first stage of the end game but I can't help feeling a little intimidated.John Dayhttp://www.blogger.com/profile/14893236427221957675noreply@blogger.com0tag:blogger.com,1999:blog-7377054694807941437.post-18186792299816836732012-10-14T08:09:00.000-07:002012-10-14T08:18:27.248-07:00Final cycleFriday just gone I started my final cycle of Chemotherapy, this nearly didn't happen as on my blood test on Wednesday my platelet count was borderline at 90 (The limit for continuing is 100). I put my lowered count down to a busy week which saw Stella and I walking a fair bit with me completing the whole circuit of our Knole walk, something I haven't managed for some considerable time, I also went to Gabriel's open evening which went on much longer than I anticipated. Stella and I also partook of some more 'adult' exercise this week which probably helped to deplete me a little (nice all the same). Suffice to say that I received a phone call from the hospital early on Friday morning asking me to come in a couple of hours early to take another blood test before my treatment and that if my count hadn't improved they would have to reschedule. This was a blow as I did not want this part of my treatment to drag on longer than absolutely necessary, not least because it would throw out the time scale for the rest of the treatment, scan, result, surgeon consultation and surgery. Also we have booked to go away in half term with the kids, this change would have threatened that trip. The journey to the hospital was a bit fraught to say the least as Stella and I were both locked into our own thoughts and were not conversing in our usually upbeat fashion.<br />
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On arrival I went straight to the blood test station and had blood taken. Once again there was tense hour and half until I was called to <i>Charles Dickens ward</i>, where I receive my infused chemo, I was settled in to my relevant station and told that my platelet count had increased to 104 and as such I would start this cycle. Stella and my relief was palpable despite the fact that I dread the next couple of days as they can be unpleasant I was very happy with this outcome as it put everything back on schedule.<br />
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While I was being settled in Stella left to go shopping, pick up Martha from School and return to pick me up. On her way out she spoke to a family that had been in the waiting area at the same time as us. She asked how they had got on and sadly the news wasn't good for the Dad, his brain tumour had returned with a vengeance and there was no further treatment that could be given. His comment was "This cancer is a bastard" but that he was going to "enjoy what was left to him". I felt this put my concerns over delayed treatment into perspective, I felt like an ingrate. John Dayhttp://www.blogger.com/profile/14893236427221957675noreply@blogger.com1tag:blogger.com,1999:blog-7377054694807941437.post-37598041171717875702012-09-24T02:06:00.001-07:002012-09-24T02:06:37.408-07:00New arrival<div class="separator" style="clear: both; text-align: center;">
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Congratulations to Mark and Hannah, baby Sophie born Sunday evening 22:38hrs weight 8lb 10oz . Mother and Baby both ok, Phew! John Dayhttp://www.blogger.com/profile/14893236427221957675noreply@blogger.com3tag:blogger.com,1999:blog-7377054694807941437.post-70858944599203964242012-09-21T02:38:00.002-07:002012-09-22T02:46:41.559-07:00A year in review<br />
As I write this we are waiting for news of the arrival of Hannah and Mark's baby, she has gone in to hospital to be induced today, 21 September, the whole family is collectively holding their breath in anticipation.<br />
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Tallulah returned from a 3 week holiday in Mexico with her Mexican friend Tania. They were largely the guests of Tania's Dad and her extended family, they obviously had a great time because Tallulah hasn't stopped talking about it. However, while they were there they went to a 'witch doctor' for a 'cleansing', part of this process involved spraying the girls with a dubious chemical which removed the beautiful tan that they had cultivated previously; <i>buyer beware</i> has never been so apt! Fortunately the skin damage isn't permanent although the tan will have to be worked on carefully next year.<br />
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I am neither a royalist or a monarchist but I must admit I was intrigued by the recent collage of the young and old queen made up of 5000 photographs of the proletariat. My interest was piqued by the fact that both Martha and Stella's brother, Doug, featured in the portraits, Stella, Martha and I went to see it at Rochester Cathedral with Stella's Aunt Jean and Steph, her oldest sister, the photos of both were instantly recognisable (Doug is wearing the Christmas crown and bow tie).<br />
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This picture is particularly poignant, Doug died suddenly 2 weeks after Martha was born, they never met. As a priest he had baptised most of our other kids, Martha's full name is Martha Lily Douglas Day.<br />
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It's been a year since I contacted my GP from France and started on the road that (hopefully) I am near finishing, I start the penultimate chemotherapy cycle today (21 September). The year has truly flashed by and has been a year of changes, not just for me, but the whole family there have been pregnancies, births, marriages and deaths I have never been so aware of the life cycle.<br />
When I look back at the blog entries I think some were quite dark in content, I don't feel this anymore I think I have come to terms with my condition, although it still has the power to scare, I am much more able to rationalise my feelings and do far less <i>'navel studying'.</i> The overwhelming side effect I have from this prolonged treatment is fatigue but despite this I still try to push myself physically. I have become more grouchy as time has gone on, some of this is down to frustration but the hernia caused by the stoma has become more uncomfortable since the operation to remove the tumour. It drags on both my stomach generally and my back.<br />
I have recently got back on my push bike and although I can't do any off road work I have managed to 'wobble' round on the road for 4-5 miles, Stella and I still go for walks regularly and after a period of these walks getting shorter we are now expanding them again. I feel cautiously confident that I will come through this trial and continue with our life together, I wasn't always this confident.<br />
The immediate future holds a CT scan on the 3 December, the results of which we will know on the 17th, after this we see the surgeon on the 20 December to discuss reversal of my stoma. Hopefully this operation will take place very early in the New Year.<br />
I will retire from the Fire Brigade early in the New Year and this represents a new beginning for us, I am looking forward to that challenge. As much as I have enjoyed my time in the Fire Brigade I feel ready for a change, I dare say this last year has influenced my feelings. I see the future as a virgin sheet of paper waiting to have another story written on it, quite exciting!John Dayhttp://www.blogger.com/profile/14893236427221957675noreply@blogger.com0tag:blogger.com,1999:blog-7377054694807941437.post-20702457202485790212012-08-13T01:35:00.002-07:002012-08-13T01:35:50.418-07:00Wedding and other stuffAnother eventful week, started with Hannah and Mark's wedding on Saturday (4 Aug). They were lucky with the weather and got some lovely photos between the showers.That's another daughter married off with another grand child imminent as well. The clan seems to be expanding at an exponential rate.<br />
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The happy couple.<br />
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The whole day was a very happy celebration and despite the fact that I managed to catch a nap between the wedding and the wedding dinner I still slept most of Sunday, I can't believe how fatigue can overtake me so completely. Still it was well worth the expenditure.<br />
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Monday we went for my Chemo review with my consultant, all is going well and she has taken me off the Fragmin! I now a greater respect and understanding for diabetics who must inject everyday. Just this step has made another difference to my outlook, it is another sign that I am getting closer to completing this phase of treatment.<br />
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Tuesday I spent the day fitting some 'naughty' new exhausts and a more freer flowing air filter to my motorbike. It took most of the day and made my stoma and hernia ache I put this down to to the constant bending over but the results! The bike sounds much more <i>fruity</i> I can't wait to give it a spin.<br />
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I am on leave at the moment and this has given us an opportunity to do some things that we have been promising to do.We took the youngest three up to London on Thursday, we'd been meaning to take them to the Gourmet Burger Kitchen (GBK) in Southwark for some time. It's a bit more expensive than the other more recognised burger chain but the food is very good and we will go back. We did our usual stroll back to Charing cross along the South bank and enjoyed the carnival atmosphere that the Olympics has brought to the city.<br />
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I finished the week starting my 5th cycle so I am officially over half way through. The first 3 days after the infusion still make me tired and sensitive to climate but the reduction in the dose and the warmer weather have made all this easier to deal with.John Dayhttp://www.blogger.com/profile/14893236427221957675noreply@blogger.com0tag:blogger.com,1999:blog-7377054694807941437.post-36178622772594812052012-07-20T14:59:00.001-07:002012-07-21T15:52:55.506-07:00Off to worklots of movement this week in both work and treatment.<br />
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The meeting with my oncologist was very positive, the shortness of breath I experienced looks to be coincidental and not linked to the chemotherapy. I have experienced similar symptoms before, my hay fever can sometimes spill over into asthma like traits when the pollen count is high as it has been recently. None the less I had a chest xray and will see my GP about Ventolin inhalers. he (oncologist) has also reduced the level of oxaliplatin by 20% and reduced the steroid I take in the 3 days after infusion following my feedback about the last cycle. I have had the 4th infusion today (Friday) and, fingers crossed, I feel more comfortable than any previous cycles, however its early days.<br />
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Stella has gone to Portugal, this weekend, with her sisters to celebrate Kate's (youngest sister) 50th Birthday. I hope they have a great time, times have been a little cruel for the whole family this year and a break, however short, will do them all good. God knows Stella has earned some R&R, still it felt odd to go for my infusion without her <i>'hand to hold' </i>as it were. Tallulah is the head of the house in Stella's absence, she is more than capable and has her Mother's strength of character.....boys beware!!<br />
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This was my first week back at work, albeit on light duties, I have managed to install the remote access (with a massive amount of guidance!) on the laptop and have already started doing some work. I think it will take a while for me to get up to speed with what is happening in the 'borough' but I've broken ground. I feel like a switch has clicked over in me changing from sickness to recovery.<i> </i><br />
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I went in to Croydon for my return to work interview and to get a brief from Nigel about what I will be expected to do. I want to try and get into the office at Tooting twice a week to start with and work from home for the remainder, of course this very much subject to how I cope with managing the work treatment balance. The picture is me on my first day back almost wearing my uniform. I have since managed to tuck my shirt in without impeding my stoma and bag. I also went to Tooting this week, as I got out of my car I felt as nervous as I did when I walked into Thamesside's (Gravesend Fire station) yard in 1983, I can't really explain this except to say I'd been in the wilderness a long time. There is a saying in the Fire Brigade 'finger in a bucket of water', when you go the space you leave back fills and you are forgotten. I needn't have worried Green Watch couldn't have been more welcoming , it brought a lump to my throat. <br />
<br />John Dayhttp://www.blogger.com/profile/14893236427221957675noreply@blogger.com1tag:blogger.com,1999:blog-7377054694807941437.post-15937361649739838452012-07-13T05:59:00.000-07:002012-07-13T06:43:17.168-07:00Busy weekThis cycle I have been quite sensitive to the cold particularly in my fingers I have also experienced some shaking nerves in my hands throughout the cycle. My 'telephone review' ended with me not having infused chemotherapy today (Friday) but having a consultant review on Monday with some peripheral tests to gauge a potential side effects from the Capecitabine. I have felt quite breathless in the last week or so and this may be indicative of of a reaction to the drug, my oncologist has already reduced the daily amount of Capecitabine by 1 gram to 3 grams a day, a significant amount. In general, I think this has made this current cycle more comfortable than the previous two. Assuming the tests are successful I will have my infused chemo next Friday (20 July). I am hopeful that the results of these tests will result in further amended therapy that will make the next few months even more comfortable. Looking at some forums I can see that I don't seem to be suffering as badly with the chemotherapy as some.<br />
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There is a definite positive to this change, previously I would have had my infusion the day before Hannah (3rd daughter) and Mark get married in August. I was genuinely concerned that I wouldn't be fit enough to attend the church let alone walk Hannah down the aisle. This schedule change puts the infusion a week after their wedding which means I will be as fit as is possible for the wedding as a consequence I am really looking forward to it.<br />
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Also this week I got through my works medical with the recommendation of 'light duties'. I was '<i>over the moon' </i>with the outcome and to celebrate Stella and I went to Zizzis for lunch we had the sharing antipasti and an excellent fish stew, beautiful company, sparkling conversation and good food; what more can a man ask . I am looking forward to this first step back to normality. I genuinely believe that mental agility is as important as physical fitness and the idea of having a challenging task to deal with is a prospect I am looking forward to. My light duties come with some ties, I have to avoid unnecessary fatigue and exposure to any virus to this end I will be mixing my work pattern between working remotely from home and going in to the office for specific tasks. Attending fires is still some way off but it is, at least, on the horizon.<br />
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Another pleasant surprise this week was that I can keep my current lease car until I retire (Feb 2013). I thought with the lease ending in August I would have the complication of replacing it, small but a concern removed none the less.John Dayhttp://www.blogger.com/profile/14893236427221957675noreply@blogger.com0tag:blogger.com,1999:blog-7377054694807941437.post-86979207571094072722012-06-26T02:16:00.002-07:002012-06-26T02:16:47.634-07:00Third CycleThird cycle in and I am taking it a little easier than the previous two, I have realised that the 3 days following infusion knock me out quite substantially. I am still getting annoying hiccoughs in this period but I have some drugs to counter the uncomfortable indigestion I was suffering. My drug collection seems ever expanding. Some disappointing news was that I will have to inject myself with Fragmin for the duration of this treatment I was hoping that this would stop after a couple of months, oh well.<br />
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Saturday before last was Martha's first holy communion and as has become tradition we went for lunch at Pizza Express afterwards. We had a good time but I found the day knocked me out and I had to go to bed when we got home. I think this was a residual effect of the virus I had had the previous week.<br />
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Later in the week Stella and I went to my Aunt Shirley's funeral, the service was very good and the eulogy, done by one of Shirley's sons in law was very moving and poignant.<br />
Interestingly, to me they have always been just Uncle Frank and Aunt Shirley but back in the fifties they toured through France and into Spain on a BSA. This at a time when there were no auto routes with convenient petrol and rest stops and if a British bike made it from London to <em>Johnson's</em> cafe on the A20 in one hit it had outstripped reliability expectations. In my eyes this makes them truly pioneers of European motorcycle touring.<br />
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On a slightly down beat, I have felt quite low this week I can't really put my finger on it, everything is positive and with starting the 3rd cycle I feel I am turning a corner. Still, I feel close to tears at times for no apparent reason. I was disappointed at not getting through my medical in June and these last few weeks have been tough emotionally and physically and it may be this that is affecting my moods at the moment. I am hoping that time and a more definitive immediate future path will help clear these <em>'blues'</em>. John Dayhttp://www.blogger.com/profile/14893236427221957675noreply@blogger.com5tag:blogger.com,1999:blog-7377054694807941437.post-13862304687674694912012-06-12T04:42:00.002-07:002012-06-12T04:42:29.853-07:00Reports of my death are greatly exaggeratedNigel told me that some friends at work were concerned that further chemotherapy treatment meant a relapse in my condition. I reiterated that the treatment I am under going is to prevent/reduce the chances of recurrence in the future. When I finish in early October I will have completed my 'nuclear' journey (hurrah!). <br />
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Just before we went away last week I lost another dear Aunt, Shirley. Her death was totally unexpected and very sudden, she was a feisty woman, full of life who worked up until 3 weeks before she died. This was another terrible blow for the whole family, I have managed to rearrange my chemotherapy appointment to attend her funeral later in the month.<br />
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Devon was a bit like the Parson's egg, good in parts, for all but 2 days the weather was atrocious. I managed the drive down on the Saturday after my infusion but was shattered when we arrived. The extreme sensitivety to cold that I suffer in that first week after treatment meant that I could barely stand going outside in the inclement weather.<br />
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This picture shows how pathectic I am in that week, the gloves are thinsulate and my feet were already numb by this point. The beach was only a 10 minute walk from the chalet.<br />
Stella ended up doing a lot of walking and taking the kids to the beach in the week, including taking Martha swimming in the sea! I on, the other hand, spent most of the time in the chalet reading or sleeping. The kids watched a lot of videos.<br />
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It wasn't all bad though....<br />
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Gabriel at Baggy point.<br />
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The kids enjoying Pasties and a sausage roll at Clovelly. Stella and I had a hot mackerel bap here and they were superb.<br />
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We also had some nice meals in 'The Thatch' at Croyde and 'Squires' in Braunton.<br />
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Unfortunately I picked up a virus and we came home a day earlier than planned, I became progressively more ill through Friday night and ended up in Pembury hospital in the early hours of Saturday morning only to be discharged at lunch time. The problem is that my treatment does have an impact on my immune system which makes me more susceptible to this type of thing, that said, talking the consultant even a 'normal' person would have succumbed. I just have to be as careful as I can to avoid contact with any such virus. I must confess that, in the early hours of Saturday, I thought this may be more sinister than it was.<br />
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I have learnt a lesson here, that first week after infusion is probably best kept with a low profile, certainly up until Wednesday. I think that driving down and back, the return journey took 9 hours and was very stressful, depleted my strength too much and contributed to the resulting illness. What I am relieved about is that so far none of the misfortunes I have suffered during this phase of treatment are directly attributable to the chemotherapy.<br />
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Finally, I am still receiving cards and well wishes from friends specifically, this month, cards from White and Blue watch Wandsworth. But everybody continues contact either through texts, phone calls, email, comments on this blog, visits or invites to 'brunch'. This contact is beyond value and continues to bolster my spirits.John Dayhttp://www.blogger.com/profile/14893236427221957675noreply@blogger.com0tag:blogger.com,1999:blog-7377054694807941437.post-31791707396260518052012-06-01T02:11:00.000-07:002012-06-01T02:11:36.582-07:00A very different weekendThankfully, the pain and swelling in my left arm have subsided dramatically and this weekend we set out to complete Reuben's birthday celebration. We went to Borough Market for 'brunch' which was what he wanted to do last Saturday but held off so that I could go as well.<br />
It was a glorious day and we walked along the river, stopping for an ice cream outside the Royal Festival hall and crossing the river to catch the train home from Charing Cross.<br />
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<br />Face book photo.<br />
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I was exhausted when we finally got home and had to 'power down' for a couple of hours. I think its too early for the chemotherapy to affect my levels of fatigue, but I am still a little tender from the operation. I suspect its this and the remnants of recovering from the DVT that made me feel so tired. <br />
Also this weekend I had brief period (less than 24 hours) of diarrhoea, I'm not sure what caused it but I drank quite a lot of carbonated drink on Saturday and I think this may have been the cause; I was warned against drinking carbonated drinks when I initially had the stoma.<br />
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Had a disappointment this week when I went for a medical for work, I was hoping to be signed off as fit for light duties. Alas that wasn't to be I am still sick pending specialist reports and have another medical on the 10th July, I will have completed 3 cycles of chemotherapy by then and will have a better long term understanding of how it affects me.<br />
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Yesterday (Thursday) I started my second cycle with the infused oxaliplatin conventionally through a cannula in my right arm. It wasn't painful just vaguely uncomfortable towards the end, I think I will use this method throughout the remainder of my treatment as it is the less complicated way of administering this drug. The initial side effects are the same as previously, initially extreme sensitivity to cold with pins and needles plus pins and needles in my arm where the drug went in, I expect this to dissipate within 5 to 6 days tailing off completely by about 8. It is all manageable and this time I have a drug (omeprazole) to counter the unpleasant indigestion and hiccoughs I had before. I take the anti sickness tablets religiously as prescribed for the first 3 days following treatment but trail them off to nothing by the 5th day they are very effective.<br />
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I feel fully recovered with no pain from the DVT and am still self administering Fragmin through injection every evening, this will be reviewed by my oncologist at 28 days but I suspect that I will end up with at least another month of injections. I am beginning to feel like a pin cushion!<br />
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I am beginning to develop a taste for the classics, I am well into the second book of Don Quixote and on recommendation I will download Voltaire's Candide to my Kindle. By coincidence I had previously heard a review of this book on Radio four's book programme.<br />
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This coming week we are going down to Croyde for the half term, I had hoped to get some surfing in myself but have had to shelve that plan for now (Bogus!). However, like any other over bearing Dad I am going to try and indoctrinate the kids with lessons and bribes to get them on a board (they're not keen and the water will be cold). We intend to have a very relaxed time and we are all looking forward to it.<br />
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<br />John Dayhttp://www.blogger.com/profile/14893236427221957675noreply@blogger.com0tag:blogger.com,1999:blog-7377054694807941437.post-11043104469999301892012-05-23T02:04:00.001-07:002012-05-23T02:08:52.847-07:00God laughs at the plans men makeReturned home yesterday evening from an impromptu stay in Maidstone hospital at the weekend. After initially thinking everything was going to plan I had a pain in my left armpit, felt like bruising, which became worse through the latter part of last week. Eventually it became so intolerable that it woke me up in the (very) early hours of Saturday morning, after some debate Stella convinced me to ring the cancer emergency line. I presented at A&E and was taken straight through to a ward for assessment, I had a DVT in my left arm roughly from the PICC line insertion to my armpit (very glad I went in now!). The clot was treated with an anti coagulant (Dalteparin sodium) and within half an hour the pain began to subside, the pain killers helped here I would imagine. I was moved to a cancer ward where the treatment continued with additional intravenous antibiotics to combat any infection and it was this plus a spike in my temperature that kept me in for a few days.<br />
On reflection I should have gone in when the pain first manifested but I honestly didn't know how much pain was acceptable following the PICC line and infusion procedures. Apparently in a few cases a PICC line can cause the problem I experienced, I have had it removed and opted to have my next infusion in a more conventional way. Fortunately this whole distraction has not impacted on my treatment timescale with the only inconvenience being taking more drugs at home than I would have liked.<br />
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This whole episode placed a heavy burden on Stella, particularly this weekend as it was Reuben's 13th and my sister's 50th (two very significant birthdays). Not only has she had to deal with running me to hospital in the early hours and then bringing everything I needed later in the day she has had to maintain a sense of normality, celebrate Reuben's birthday and take the family to the 50th birthday barn dance in the evening the return reports all indicate a good time was had by all.<br />
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I found missing these birthdays very hard.<br />
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Today is another day, Stella and I are going for our (now) customary walk in Knole followed by lunch in the town.<br />
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While in hospital I restarted reading Don Quixote, I had previously crashed through 250 pages and stopped, Cervantes' novel is a read that demands time to enjoy and given my enforced confinement I had plenty of it, his principle characters are both laugh out loud funny and tragic at the same time. Looking round the ward there were obvious contenders for the part of both the Don himself and Sancho making Cervantes' human observations as current now as when he wrote them.John Dayhttp://www.blogger.com/profile/14893236427221957675noreply@blogger.com1tag:blogger.com,1999:blog-7377054694807941437.post-26093521160521729162012-05-15T02:47:00.001-07:002012-05-15T02:47:10.312-07:00Still early daysThe weekend proved a mixed bag of experiences, Friday after the infusion I drove myself down to see the surgeon at Pembury and, other than the pins and needles, felt fine. Saturday I felt so good I did some maintenance on my mountain bike, changed the brake pads, but by Saturday night I felt dreadful. I had terrible indigestion and hiccoughs, these were so bad that I hardly slept at all Saturday night, Sunday I was completely shattered and again Sunday night I felt rough. Initially I put this feeling down to the steroids as I had no experience these drugs before and didn't really know what to expect. However, Stella did some Internet searching and the cause may the the anti sickness tablets. It seems that they can cause this sort of reaction in someone with a stoma. I am experimenting with not taking them at the moment, I never felt any nausea when I took Capecitibine previously and didn't take any anti sickness so until I can ask advice at the hospital I shall see how it goes.<br />
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Monday Stella and I went for a walk in Knole park, a very regular event now, It always feels good to get out in the fresh air and Monday was no exception. Even the pins and needles I felt in my face didn't detract from the walk. I had to sleep in the afternoon but it was a very welcome rest after the weekend.<br />
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And so to today (Tuesday) I feel fine as I write this, I seem to have recovered some of my energy. I might get my hair cut today and my eyebrows trimmed (beginning to look like Dennis Healey!). Later we're going to the hospital where Stella is going to be shown how to flush my PICC line. Assuming she is okay with this procedure the number of visits to the hospital will be reduced quite significantly.John Dayhttp://www.blogger.com/profile/14893236427221957675noreply@blogger.com1tag:blogger.com,1999:blog-7377054694807941437.post-70708150277507123842012-05-11T03:47:00.000-07:002012-05-11T03:47:30.498-07:00Treatment day plus oneThe pins and needles effect seems to be becoming more manageable. However I do get it in the tips of my fingers not just with an ambient temperature cooling but also if I pick up cold objects, a bottle of milk from the fridge for example. Also when I eat I get a sharp pain at the jaw hinge on the initial bite, this goes after a couple of seconds should be a deterrent to gorging on biscuits, so not all bad.<br />
I had a shower today the first with my PICC line, Stella clingfilmed my arm just to give a bit more protection and she has already been on line and bought a more substantial waterproof protector.<br />
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In addition to the infusion here is the list of drugs I take on a daily basis through the cycle:<br />
<ul>
<li>Dexamethasone (steroid) 1 three times a day for the first 3 days after infusion.</li>
<li>Capecitabine (chemotherapy) 4 tablets twice a day for 14 days after infusion</li>
<li>Metoclopramide (anti sickness) 2 tablets four times a day for 3 days after infusion and 1 or2 four times a day as necessary.</li>
</ul>
This cycle is repeated 8 times through 24 weeks. <br />
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During the cycle I have been advised not to drink any alcohol. So, plenty of drugs (above), as much rock and roll as I want to listen too (and play badly) and as for the sex? well we'll give that a go when my lower stomach muscles and pelvis feel up to the task!<br />
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Another piece of advice was to not to sire children while I am going through this procedure, nice to know rather than need to know I thought.<br />
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I managed to move my surgeon appointment to today (Friday) so I'll get an update on that part of the treatment as well. The down side is that I suspect I will 'probed' again, not the most pleasant way to spend a Friday afternoon.John Dayhttp://www.blogger.com/profile/14893236427221957675noreply@blogger.com1tag:blogger.com,1999:blog-7377054694807941437.post-29312873559851952842012-05-10T08:40:00.000-07:002012-05-10T23:39:56.823-07:00One down seven to goJust returned from Maidstone hospital where I received my first infusion of oxaliplatin. Before the actual drug my PICC line dressing was changed, the line was flushed, then the chemo was infused, the line flushed again and we were given the tablet regimen. This whole process took a withering five hours! Hopefully the next visits will be slightly shorter. I have already felt some of the side effects associated with this drug, extreme pins and needles in my hands and face particularly when exposed to the (relative) cold. This sounds slightly effete but it was so extreme in my fingers that I couldn't pick anything up or open a biscuit wrapper. However, as I write this the effect seems to be wearing off. If it carries on until the next infusion I have to report as it could lead to more long term/permanent nerve damage.<br />
I was very nervous on arrival but, as throughout my treatment, the staff exude such confidence and knowledge that I found I became much more relaxed (if such a term can be applied to chemotherapy).<br />
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Once again I have enough and varied drugs in tablet form to open a small pharmacy.<br />
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Here is a picture of me receiving my first infusion and a close up of where the PICC line goes into my left arm. I had the PICC line put in yesterday and despite my fears I must say it was a completely painless procedure.<br />
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Note to self: try not to smile in every photo, it gives a distorted impression.<br />
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The PICC line enters my inside upper left arm into a vein, up to my shoulder, parallel with my collar bone and enters a large vein in my chest. I don't notice this fixing at all, it doesn't impede movement and I can safely shower with it (although swimming isn't an option). However, for me, the biggest advantage is that I won't have to have any more needles for the duration of this phase. This is because not only can chemo be put in, blood can be taken out. No more sweaty upper lip scenario at blood test time!<br />
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Note: After I made this entry Hannah came round and I opened the door to let her in. The relatively cold blast of air caused instant pins and needles in my face, principally mouth and nose, and my hands. This was unlike anything I have experienced before and felt like shards of glass, very uncomfortable. I also had an instant hot flush and felt nauseous, I took two anti sickness tablets as a precaution but on reflection I think this was just a shock reaction.John Dayhttp://www.blogger.com/profile/14893236427221957675noreply@blogger.com0