Friday, 28 December 2012

Monday 6th February 2012 - Usual clinic for blood tests and chat with doctor to see how I was coping with chemo. I reported that I had experienced severe pain in my fingertips after I took some wet washing out of the machine - the combination of cold and wet is enough to trigger off the neuropathy. I was also noticing the corners of my mouth were getting sore and cracked. I knew it was chemo - related , so was not too worried . The doctor said he would continue with the same dose of chemo and would continue to monitor side effects as the dose could be adjusted if the effects were getting too unbearable for me. I was aware that the side effects were going to get worse as time went on , but there was no point in worrying about it till it happened!.

All the information you need in one handy booklet!
Wednesday 8th February 2012 - Chemo day again - number three of twelve . Chemo patients are given a record book to carry about with them . It contains a record of all treatments given and also has a space for them to record any side effects they have experienced . There is also a list of contact numbers if there are any worries . The only thing I would say about this booklet is that it tends to make you focus too much on your illness and side effects of chemo- Asking all sorts of questions about severity of side effects.I realise that it is a useful tool for people to keep a note for the doctor , but I felt it wasn't right for me. I just wanted to get on with things and not let it rule my life.
Some questions

This is my own personal view , and I am sure a lot of people will disagree.That is fine by me - I won't be offended!
The chemo went off without incident , and I watched my usual comedy DVDs .
 Hooked up to the 5FU again , I went home to watch my new favourite TV show Pointless !


Wednesday, 26 December 2012

Monday 30th January 2012 - I felt ok , was not having many effects from chemo , so I decided to go and visit my "homies" in dermatology at the Western . You could not get a better bunch of people to work with - I have been in nursing for thirty six years and have worked in a lot of places , so I feel I am able to make that statement ! Claire gave me a lift there as I was not really supposed to travel on public transport in case my immune system was low due to chemo. I went at lunch time so that I was not disturbing any clinics . It was great to see them all again . They had been very attentive since the start of my illness, sending cards , presents , flowers , and texts to keep up to date . I saw a few of the doctors too , and some of the secretaries and receptionists . It is a very well-run department and everyone gets on well - very professional , without being over familiar . I stayed for about an hour then went home . It had been nice to get out but I was feeling tired , although not the terrible fatigue that some chemo patients had described .
I had been reading somewhere about the importance of gentle exercise while receiving chemo and also the part it plays in cancer prevention , so had made a concerted effort to try and go out for a walk every day with Bill and the dog. For the five years before  my illness I took part in Race For Life to raise money for Cancer Research UK . I was inspired by Claire after I had gone along to watch her compete one year. I was surprised to see women of all ages and all shapes and sizes - I thought " I should be doing this !", so I signed up for every year after that . I fully intended to do the 2012 one as well (chemo side effects permitting). I downloaded an app called Endomondo  to my iphone to give me some idea of how I was progressing - hoping to walk a little further every day. I had plenty of time as Race For Life was not till June , near the end of my treatment!
Let battle commence....... I only lasted ten minutes the first night as my feet were quite painful . Still , it was a start....plenty of time ........

Tuesday, 25 December 2012

Sunday 15th January 2012 - I was feeling ok apart from my tongue being brown and feeling slimy- tasted disgusting as well, but was not painful. Apparently it is a known side effect of chemo , so I would just have to get on with it . Claire had bought me a tongue scraper to try and get some of the rubbish off my tongue and I had been advised to use Soda Bic in warm water as a mouth wash to help . Prevention is always better than cure , so I was willing to try anything to prevent a sore mouth . I was also taking Refreshers - they tasted ok and were fizzy on the tongue .
My PICC line was due to be dressed  as it had been about a week since it was last done. I had had a discussion with my district nurses on a previous occasion about the possibility of my sister doing my dressing , especially as this was an area of expertise for her ! The nurses were quite happy for this to happen as they said some family members are taught how to change dressings . They said they would continue to visit when my chemo pump needed disconnecting .
So Rosie came round in the afternoon and carried out the dressing and flushing of the line . The district nurses had supplied everything that was needed , so there were no problems .
That was me free for one week ! I did not do very much during that week , except watch TV and DVDs and got out in the evening for a gentle walk ( well - wrapped up , of course ) with Bill and Bobo  . I had started watching The Good Wife when I went off sick , and Claire's boyfriend Paul had bought me the boxed set for Christmas - great programme ! I would say the week was uneventful , so i won't bore you with all the details!
Monday 23rd January 2012 - Appointment at clinic to see oncologist . This would be my routine for the next six months - See doc , talk over any problems , get bloods checked and , if all was ok , get chemo on the Wednesday . The good thing about having the PICC line in was that my blood samples could be taken from it , so there was no pain involved. My dressing would also get changed on the Mondays that I attended the clinic . Claire had arranged her shifts so that she was always able to drive me to the clinic - I was a very lucky person !
The doc said he would phone me if my bloods were abnormal , but he didn't really expect that to be the case at this early stage . So , I was all geared up for Wednesday again for round two !
Wednesday 25th January 2012 - Claire gave me a lift in the the Beatson and we were nice and early . Claire just went home as I was going to be there for a good few hours and I don't like people having to wait about for me . I was taken round to the Macmillan day care unit and asked to sit in one of the recliner chairs . The nurse came and went through the usual checks and then hooked me up to a glucose drip until my chemo arrived. The tea lady came round , but I couldn't bring myself to drink it because it was rotten the last time I had it , and my yucky mouth meant everything tasted rotten anyway . One thing she did have , though , was a nice strawberry yogurt . For some reason this was the only thing that I could taste without being disgusted . I remembered a patient telling me that the only thing she could taste was banana flavoured things like yogurts , custard and sweets .
Bob Downe- my hero!
My chemo arrived and I was hooked up and good to go . I had more comedy DVDs to watch - Bob Downe is one of my all time favourites . I just need to look at him and I laugh . I have met him on several occasions and he is always so lovely .      I also had a DVD of Rock Profile , which is just so funny . I also watched more of Gary Tank Commander , and Summer Heights High . Maybe that was my way of rebelling against the big C- "I laugh in your face ! you will never bring me down" ! Anyway , chemo finished without incident and I was attached to the pump again for the next forty eight hours or so . I got all my protective clothes on and went to the car park to get Claire . As it was Burns' Night , it was haggis and neeps for tea - and I managed to eat it ok , although I was not really getting much of a taste .
Same old same old regarding taking the tablets to counteract any nausea , and same old same old regarding the sleepless nights due to the steroids. It didn't really bother me , because I knew that it would not last forever , so I just played my word games and kept up to date with Facebook and Twitter!
Thursday 26th January 2012 - same facial flushing as before - must be a side effect! No worries .

Friday 27th January 2012 - district nurses came in the afternoon to disconnect me again and that was me free for another wee while . I was not really experiencing any great side effects , apart from the horrible mouth - one of the nurses in the Beatson had suggested using a soft toothbrush and brushing my tongue with toothpaste a couple of times a day . This was safer than using a tongue scraper , in case my platelets were low after chemo , although this was not really a common occurrence .
I never had any neuropathy at this stage , but had been told that the effects were cumulative , so it might take a few more treatments for that to kick in . If I was still feeling ok at the start of next week , I was planning to go and visit my colleagues at work ................

Sunday, 16 December 2012

Thursday 12th January 2012- I had not really slept at all the previous night. I wasn't worried about anything , I think it was just the effects of the high dose steroids I had been given. The line was not uncomfortable and the bum bag was not annoying me. I did ponder for a while though as I looked at my arm with the PICC line in ..... " I am actually getting chemotherapy at the moment! How did that happen ? This is so surreal !"I eventually got out of bed at 6 am as I was feeling a bit seedy - was it hunger or was it chemo? Who knows!
 Anyway , I wanted to carry on as normal as this "beast" was not going to rule my life- it was just an annoying , uninvited visitor! I decided to have a nice relaxing shower. Having a PICC line can be a problem when you want a shower, as you need to keep the area dry . Never fear -the Beatson nurses had given me a supply of plastic sleeves which you place on your arm to cover the line and bandage while you shower. I proceeded to cover the area and stepped in to the lovely comforting shower. My abdominal wound was healed but I was still having altered sensation to that area - I couldn't feel the Soap and Glory gel as I was smoothing it on - but I knew that that would improve in time.
After my shower I went to get breakfast . I had bought in a supply of Variety packs as I did not really fancy my usual Weetabix or porridge. I took the Coco Pops and was careful when taking the milk out of the fridge, remembering that cold is the enemy of people receiving Oxaliplatin! I put on gloves to get the milk out of the fridge and warmed the milk in the microwave to take the chill off of it.I then took my tablets afterwards -Dexamethasone and Domperidone .
I switched on TV and basically just chilled out! When my family got up later on , Claire noted that my face was bright red . I had felt it a bit warm , but thought that was due to the heat in the house . I was surprised when I looked in the mirror and saw that my face and neck were a florid red colour ! I didn't panic because I knew the side effects of steroids , and i didn't feel ill with it anyway. I wasn't going to phone my doctor every time I had a wee niggle or annoyance.
My day was uneventful as regards side effects , but I had been told that the effects would be cumulative , so I suppose it was early days!
Friday 13th January 2012 - No I am not superstitious! After another wakeful night, same routine as yesterday , but the facial flushing was not a problem today. My pump was still working - I had been told to check it in the morning to see if it was deflating ok , and it seemed to be ! The district nurses were due to arrive to disconnect the pump at 4:30 pm. 4:30 came and went , as did 5pm , 5:30 , and 6pm. I was getting a bit twitchy as the Beatson nurses had said the pump should be disconnected 48 hours after start of infusion. I ended up phoning the district nurse service just to check they had me on their books. The nurse was very pleasant and said that their shift change over was at 4:30 and that the hospital should have said that  it was not imperative that the pump be disconnected after  exactly 48 hours- there was a leeway of a couple of hours.
I will not go in to the politics of the re organisation of district nursing services and how the whole of Glasgow is covered by a health centre which is on the outskirts of Glasgow , and there are fewer nurses to go round - that is for another day!
The district nurse arrived at 6:30 and got to work straight away.This was just a case of removing the infusion pump and flushing the line with sterile saline and capping off the line. because it is a sterile procedure , the nurse washed her hands thoroughly before hand - just saying! Everything that the nurse needed was actually in my house as it had been supplied by the nurses in my own health centre - they had brought a big plastic box with everything in it!
Once the pump was disconnected it was put in a sharps box , supplied by the Beatson , which i would take with me on my next visit in ten days.
The nurse then wrote in my care plan and left - that was me free again!
I still had to take the tablets as the chemo was still in my system and could cause nausea.
The only real effect I noticed from the first chemo was that my tongue felt as if it had a slime on it- disgusting! I was drinking plenty of tea and warm Ribena and warm water , so would need to wait to see how things got on as treatment progressed.
Saturday 14th January 2012 - Another early start after another wakeful night . I had started playing a game called Words With Friends on my iPhone , which was nice because it meant I could hook up with friends and family in America and Australia due to the different time zones- there was always someone online!
Flowers from my work colleagues
Went out to shop with Bill , but was wrapped up like a mummy- no cold air would enter my lungs! Got some lovely bouquets of flowers from my workmates and some friends .Onwards and upwards......

Friday, 7 December 2012

Wednesday 11th January 2012 - Chemo day! Hadn't really slept too well , so was up , showered , and fed quite early . I had to put a plastic sleeve over the PICC line as I showered and thought -"that's me for the next six months , or it might be three !" Claire , Bill and I then made our way in to the hospital - a half hour drive away. Claire dropped us off and went to search for a parking space - a rare sight in a hospital car park! I had taken a few things with me , as I had been warned that the cold would affect me post chemo . So I had a scarf , hat , gloves , and furry boots , with an extra pair of socks - I wasn't taking any chances ! I also took some DVDs with me to watch , as I was told the infusions lasted at least five hours , my Nintendo DS with Puzzler games , and my trusty ipod as well. We reported to reception and sat down. I recognised one of the patients in the waiting area- she was a patient of mine in dermatology and was receiving chemo for breast cancer . She was surprised to see me there , and I was sorry to hear that her cancer had spread to her spine . although she was upbeat about it and was in for more chemo. My appointment was 10 am , and I was taken round about that time . The nurse introduced herself and led me in to a treatment area with six bays with lounger chairs in each bay . I was surprised at how open it was . I wondered about privacy issues , but saw that there were portable screens there if required . There were a couple of patients already hooked up and receiving treatment . They nodded and carried on reading . I was told I could choose where I wanted to sit , so I chose a chair next to a woman who seem quite friendly . I felt a bit lost , not knowing where to put things , but she soon put me right ! She started to tell me that she had been receiving chemo on and off for seven years ! Then she proceeded to tell me her life story , even although I never asked . I understand that some people need to unburden themselves , but at least let me get my coat off first ! The policy of the hospital was that , if it was your first treatment , your family could sit with you . I didn't really like the idea of my husband and daughter sitting beside me for five hours while I was getting pumped full of poison , so I gave them permission to go for a walk or do some shopping ! Rosie , who was working in the adjoining unit , brought me round a portable DVD player , so I was good to go !
All the nurses were lovely and very busy ! One nurse came over and said she would do my PICC dressing and then start an infusion of glucose , as my chemo was not in the department yet . My doctor came in and told me I would be getting the six months of chemo rather than the three months - I kind of expected that !
I put one of my DVDs in to watch , and used my earphones from my iPod- didn't want to disturb anyone ! All the DVDs I had brought were comedies . Well , they say laughter is the best medicine , and it boosts the immune system - just what I needed .


My first chemo-Alaris pump at the back

DVD player just sat on my bedside table
My chemo had arrived in the unit , so two nurses came over to check details with me , then it was started off - the steroid and anti sickness infusion first . The tubes were fed through an Alaris pump , which counts the drips and basically tells you if there is air in the line and the volume infused and the volume remaining. I thought to myself - " Is this it? I never felt anything at all ". Because the PICC line was in place , and there was no restriction in arm movement , I could just carry on as normal watching my DVD and playing with my Nintendo .
The tea trolley came round and I took a cup , but it was rotten ! "Need to remember to bring my Scottish Blend with me next time" !
The alarm in the pump started to bleep as the first lot of infusion was complete- now for the big boys ! The two nurses again asked for my details and checked that they tallied with the information on the chemo bag and prescription  sheet . The Oxaliplatin was then started off . I was advised I could get up and wander about at any time , especially as I would probably need the toilet after all this fluid ! I actually felt fine during the infusion and enjoyed watching my DVD of "Gary Tank Commander"- makes me laugh every time. Claire had bought me a DVD called "Summer Heights High", an Australian "mockumentary" - very funny!
After a few hours  , the Oxaliplatin was nearly finished , so the nurse said I would get a bolus infusion of 5FU and then get fitted with a pump of 5FU which would remain in place for forty eight hours and would be removed by the district nurses. Oxaliplatin finished , line flushed , then same questions again - got to be done - then the 5FU infusion was connected up to run over ten minutes .



The dinky wee 5FU pump-it collapses as it infuses


Ten minutes later , after the same questions , the wee , dinky 5FU pump was attached to the PICC line and I was given a bum bag to carry the pump about in .
I must say that I never felt uncomfortable , either physically or emotionally , at all the whole time I was in. The staff were excellent and efficient . I had expected to be vomiting all over the place , but I never even felt nauseated . I was given a three day supply of Domperidone tablets  , and Dexamethasone  tablets to counteract the nausea . The nurse said she would arrange district nurses to come and disconnect the line on Friday afternoon .
I was given a booklet to chart my chemo administration and take note of any side effects or after effects. I then got all my protective layers on and wrapped the scarf around my mouth- I wasn't taking any chances - Oxaliplatin can give you a feeling of shortness of breath if you breathe in cool air , and can be quite frightening .
Next stop , home !!

Thursday, 6 December 2012

Friday 30th December - What a day to have a clinic appointment with a cancer specialist! I suppose no day is a good day. Anyway , Rosie drove Bill ( my rock) and me  along to the Royal to see the oncologist. I thought , "This is going to be awkward because I have worked with this guy , so has Bill , and my sister is working with him at the the moment "!
  A wee aside - I forgot to mention that Bill was a cancer nurse specialist in the Royal and currently works with Macmillan Cancer Care on their helplines. My sister , Rosie , is a Cancer Research sister at the Beatson in Glasgow-such irony!
As I was saying , I thought it would be awkward , but , in fact , it was not at all. He welcomed us in to his room and said " I really don't know how to pitch this conversation , because of your knowledge of the subject". I replied , " Today I am a patient , so just treat me like any other patient please". Some people might say, "Why not go to another doctor?". My response to that would be ,"He is the best in his field , and I trust his judgement".
He explained that I had what is called a "Dukes C" cancer , which means that , although it was all removed , there was some lymph node involvement.The surgeon had removed twenty lymph and only four were affected.That was good news. He said I would need to undergo a course of chemotherapy to mop up any stray cells which were floating about . Must admit , I was a bit shaken with that as I thought the surgery would be enough , but he knew best.
 He told me the chemo regime I would receive is called FOLFOX - a combination of Folinic Acid, Oxaliplatin , and 5-Fluorouracil , with steroids and anti emetics as well.I would receive this every two weeks for six months .He said the side effects could be quite nasty , and would have a cumulative effect rather than hit me all at once.These effects included nausea,vomiting,diarrhoea, and peripheral neuropathy(altered nerve sensation ).He also said that everyone reacts differently and that I would be monitored every two weeks to see what effects I had , as adjustments could be made to the dosage. I told him that my wound was still leaking but he said this would not hold up the chemo- maybe I was just trying to stall him! He explained that I would get an appointment for the Beatson Cancer Centre in Glasgow to get a PICC line inserted and that I would start chemo a couple of days later.He said I would receive the appointment very soon.
Rosie took Bill and me  shopping after that - the first time I had been to the shops since my surgery , but I did not feel particularly great , so we just went home.

Thursday 5th January 2012- Got appointment through to have PICC line inserted.Load of information enclosed , including my chemo appointments for the next six months- seems strange to see it all written down in black and white. Information leaflet about the PICC line was very informative , if a bit frightening.My appointment was for the following Monday-that was quick!

Monday 9th January 2012 Morning- Appointment to have PICC line in at 10am , then to see oncologist at 2:30 to get chemo regime prescribed.
My darling daughter , Claire, gave Bill and me a lift in to the hospital , so we were there bright and early. I was a bit nervous- the first time I had felt nervous since all this had started.
 I was shown in to the procedure room and was introduced to the two nurses who would be carrying out the procedure.There were machines and trollies everywhere , and a radio in the corner! I had to go through a checklist , similar to a pre-op list and had to sign consent.
I lay up on the table and asked if the radio could be switched on , as I find that helps relax my patients when they are undergoing skin biopsies.The nurse agreed. My left arm was exposed and washed down with antiseptic. The nurse was explaining everything that she was doing , but I told her she did not need to bother , as sometimes anticipation can make you more tense. Some folk want to know every little detail , but I am not like that-each to their own! She did tell me when she was putting in the local anaesthetic in case I jumped at that , but I have discovered that I have a high pain threshold , so it was no bother. I did not watch what was going on , because I trusted the nurses expertise.To be honest , it was just like getting a drip put in , only higher up your arm , and a longer line!The PICC is designed to reach your superior vena cava and is intended to stay in position for the duration of your chemo-It stands for Peripherally Inserted Central Catheter.The procedure is carried using ultrasound so is actually better than going in "blind". I honestly never felt a thing and the procedure was over in twenty minutes.The external part of the line was taped in place on my upper arm and was to be my companion for the next six months.The nurse said I had good veins - cheers! Being a non-smoker does have its advantages!
The PICC line in place on my upper left arm.







It is actually quite comfy- if left alone!
                                                                                                                                               Afterwards , I had to go for a chest x-ray to make sure that it was in position.It was , so now I had to hang about for the afternoon clinic - the worst part was over and it wasn't that bad at all!



We went out for a walk as I had a few hours to spare and it was actually a pleasant day for January!The Beatson is in the west end of Glasgow and has some lovely parks and waterways near by.

Me posing just down the road from the Beatson

Monday 9th January 2012 Afternoon- Appointment with oncologist - he works between the Royal and Beatson , so it was the same doctor-I am not giving out his name as I have not asked for his permission, just in case some people were wondering! He said there was actually a trial going on to determine whether giving the same drugs for three months instead of six months was just as effective.He asked if I would be interested in taking part , although , as it was randomised , I would not be able to choose whether I got three months or six months.The trial was called the SCOT trial ( nothing to do with Scotland!)I agreed to take part as I know how important these trials are.I had to read through a load of information then sign a lot of forms- I would find out if I was getting three or six months before I started the chemo.I then had ECG and weight done before he prescribed the poisons!No questions, so he said he would see me on Wednesday when I was getting the chemo.Short and sweet....Home !

Wednesday, 5 December 2012

17th November 2011 - A Thursday , I remember it well! The day before Bill's birthday and I hadn't managed to buy him anything because of this stupid sickness. I am sure he understood....... I reported to the reception desk at A&E at GRI-so many abbreviations! I didn't have to wait long as they were waiting for me-the doctor had phoned ahead-such competence! As I walked in to the department I recognised a few of the nurses , in fact one of them was a patient of mine in dermatology! No embarrassment , no awkwardness , just a quiet efficiency . After my name band was put on my wrist I was taken for an abdominal X-Ray before I saw the doctor . I was then taken to a cubicle , where I was catheterised and had an IV inserted. Had full blood screen done as well . The on-call surgeon came and told me that the X-Ray showed a mass in my bowel .He was very non-commital-could be one of several things. I must admit , at this point I was hoping it was gallstones , but the symptoms did not really fit . I was taken up to the surgical receiving ward where the nurse inserted a naso-gastric tube-My nose was bleeding copiously because it was a wide-bore tube , needed to drain all the shit (literally) away, that she used - must have caught one of my nasal polypi . I told Bill to go home at this point as I was in the best place and he was exhausted. He went reluctantly. The consultant came in to do a round at about 9pm . He was lovely and very reassuring.Said he would arrange a CT scan in the morning and that I might need an operation . For some reason I was not nervous at all , which is strange for me ! Maybe it was just the professional way that everyone went about their work or maybe it was just resignation on my part . I managed to sleep quite well that night , the NG tube taking away the need to vomit.
Friday 18th November 2011 - Bill's birthday - I sent him a text -I was surprised that mobile phones were allowed , but wasn't complaining . The consultant came round again and said he would see me later after the scan .
I went for the scan about 10 am . For those who have never had a CT scan before , please do not be worried if you ever have to get one . It is a pain free experience . A dye is injected in to a vein and you just lie back and relax ! The preparation is longer than the procedure- it is over before you know it . I closed my eyes throughout as there was nothing to see. You feel a bit warm when the dye goes in , can get a dry mouth , and a feeling as if you have passed urine , at least , that is what I felt !
I was taken back to the ward and the surgeon came to see me . He told me there was something there that looked like a tumour and he was going to operate that afternoon - didn't want to leave it any longer . Next thing I was getting was an ECG , then I got a visit from the anaesthetist , who was a wee darling! Turned out he was great friends with the professor I work with in dermatology . I felt really safe because of the professional and confident manner he had . It is a worrying time before surgery because you wonder if anything will go wrong or if you will wake up again , but I didn't have that feeling at all. I was just looking forward to getting this horrible thing cut out.
I'm told I was in surgery for four hours , but I don't remember much about it . I vaguely remember being wakened from the anaesthetic and being told it went well . I didn't feel any pain at all and was pleasantly drowsy . I was in high dependency  , on oxygen , heart monitor , hourly urine volumes , patient controlled analgesia , and had an arterial line and a central line in too . The physiotherapist came as well to assess how my breathing was , and was pleased that I was not a smoker as this made things easier for me .
Saturday 19th November 2011- the consultant came and told me that he had cut out a large tumour and had to remove one third of my bowel too , but he was sure that he had got rid of it all . I had every faith in him .
The night before the operation
Claire's boyfriend Paul got me these
My wound extended from mid breast bone to below umbilicus , hardly keyhole surgery but I was delighted to survive the surgery, after all , it is only a scar , a sign of healing.
I remained in high dependency for four days and was then moved to a surgical ward . I was in a six bedded area , which didn't bother me in the slightest - it is good to see other patients and see how they are coping with things ....as long as they sleep at night!
I was surprised how weak I was after the surgery-I was in bed for a few days and was then allowed to get up. I had to use a Zimmer frame at first , and was unable to walk upstairs- physiotherapists do have their uses!
My family and work colleagues were very attentive , but a special mention must go to my man Bill - he came to see me at every visiting time and brought me sandwiches and ice cubes for my water jug . Paul would bring me loads of Pepsi Max whenever he visited , and Claire and her boyfriend Paul brought me juice and sweets and magazines. I got loads of Get Well cards
 My wound did not have a drain in it so it leaked almost constantly , which resulted in many changes of dressings and bedclothes. My bloods were giving cause for concern - white cells ,  ESR and CRP  , were rising , which could indicate infection in the wound, but swab results came back negative. I was started on IV antibiotics as a precautionary measure- Vancomycin, Gentamicin, and then I needed a blood transfusion -thank goodness for blood donors ! I was then given Clindamycin - the doctors were worried about the possibility of me developing Clostridium Difficile, but they felt the risk was worth it- I was fine anyway !
Two weeks after the operation the surgeon told me that the tumour was a cancer and that he was going to refer me to an oncologist who I would see as an outpatient . I didn't ask any questions because he told me that it had been completely removed , so I was happy with that....
Three weeks after surgery ,  I was discharged into the care of the district nurses , as my wound was still leaking.The following day I noticed that I was covered in a florid rash all over my trunk. Now , being a dermatology nurse , I assessed it . It was viral , I thought , so would probably disappear in a few days. The following day I woke to find my face swollen - I had mumps! Probably due to lowered immunity. That was the reason for the raised inflammatory markers- oh well, we live and learn.......
The district nurses were great - very helpful and friendly . I even got a visit from my GP ! Got my appointment for the oncologist at the Royal Infirmary the week after Christmas ......
Where do I start ? I have never written a blog before , so you will need to bear with me. I had had no intentions of actually writing about this episode in my life, but was encouraged to do so by a few people, in the hope that it may help others.
Paul and Claire when they were younger.
Misty and Bobo in disguise!!
My name is Anne, I am fifty five years of age . I am happily married to Bill and have two wonderful children - Paul is 27 and Claire is 24. Our family pets are Bobo , the crazy black Labrador we acquired from the Dog's Trust , and Misty , the crazy grey cat we acquired when my sister's cat had a litter.
I am employed as a nurse in a dermatology department in Glasgow and I love the work and the people I work with , and the patients I look after.
My life reached a turning point in November 2011 , and that is what this blog is about. I ended up as a patient with a life-threatening illness . It is life threatening . CANCER . There I've said it . Wasn't too painful ,was it? Some of what I am about to write might be a bit embarrassing for some , but the aim is to stop people dying because of embarrassment .
September/October 2011 - I had been feeling very tired and put it down to the fact that I was getting up for work every morning at 5:30 am , and going to unlock my mother's door so that her carers could get in and then going to do a full day's work. Mum is ninety two and unable to look after herself fully , but she did not like the idea of strangers having a key to her house-understandable, I suppose.Anyway, I was exhausted and some of my colleagues were commenting on how pale I was looking.One of the consultants even said " If you were my patient , I would be booking you in for a colonoscopy". I was slightly alarmed by that , because I felt ok, didn't I ?
On Friday October 7th , I arrived home from work and had this sudden urge to go to the toilet . Look away now if you are squeamish ! After I had been , I was shocked to see a large amount of fresh blood in the toilet and on the paper . I didn't have haemorrhoids , as far as I was aware , and hadn't felt any pain at the time. I was very concerned about this and  , as it was after hours , I phoned NHS24 to ask for advice. After the usual round of questions from the call handler I was put through to the nurse and asked the same questions again- I know they have procedures to follow , but I was getting more anxious with all these questions. Anyway , the nurse said "Is it fresh blood or altered blood?" I stated that it was fresh . He then said "Well it is probably piles,but if it happens again just give us a phone". I wasn't too happy with that , but what could I do? Unfortunately , it did happen again half an hour later . I phoned NHS24 and went through the same rigmarole again , but insisted that I been examined by a doctor as I was worried. My sister (also a nurse) drove me to the local out of hours service , where I was examined by a doctor and a nurse. BP , Temp ,Pulse , Resps , Urine , rectal exam , and abdominal exam - no abnormalities found! I was advised to see my own GP on the following Monday to be checked out further. I was prescribed Proctosedyl suppositories , which actually worked after the first administration!
The weekend was uneventful , but I phoned my boss on Monday and explained that I would need to go to my gp to be checked over and would not be in to work. I phoned my gp surgery to ask for an appointment.They have this system where they decide if you need to see a doctor , or if a nurse will suffice. On this occasion it was decided that I would see a nurse . I went for the appointment and the nurse did a digital rectal exam and said there were no haemorrhoids.I kinda knew that , but thought "oh well, she will probably organise some further tests".WRONG! She said "That's fine-if you have any more problems just give us a call". I asked if she was going to be checking my blood count as I had lost quite a bit. She said "I suppose I could", so blood was taken for FBC and that was that!. I went back to work the next day and nothing untoward happened. As the days went on and I hadn't heard anything as regards blood results , I figured all was fine.Two weeks after the blood test , I received a letter from the doctor asking me to make an appointment to discuss the results. I made one for the Thursday of that week and saw a nice young doctor who told me that my haemoglobin was 8. He prescribed Ferrous Fumarate for me and said he would refer me for a colonoscopy.Fair enough-it's got to be done! I got my prescription filled and started taking the tablets that day. I took them over the weekend but was feeling quite queasy , although I did carry on taking them.
I went to work on the Monday and didn't feel particularly great-nauseated with a bit of abdominal bloating. We had a drug lunch , which was lovely, but I looked at the sandwiches and couldn't bring myself to take a bite of one. My boss sent me home . Just as I got to the train station , I felt really sick and actually vomited outside the station- the first time I have been sick outside. I managed to get home via train without any more vomiting. I went to bed and Bill said "You must be ill- you never go to bed!". I was no better the following day , so stuck to water only . The next day (Wednesday) I phoned for a doctor's appointment . They have another system whereby , if you are not well enough to go to surgery, you can have a telephone consult ( strange....surely if you are not well enough they should come to you!).Anyway , I spoke to a female doctor( I am not naming her here) and told her my symptoms.She said "Oh that sounds like Staph Aureus food poisoning. I got that when I was on holiday in Italy.It can last for weeks". "Oh well" , I thought," I can accept that, if that is what it is". The days dragged on , with my family taking great care of me but obviously being very concerned about the fact that I was getting worse instead of better. In the ensuing four weeks I had had to phone NHS24 twice and was given IM Stemetil then Buccastem to use as required.I also had to GO to my gp on two occasions and was given IM Stemetil again. The drugs did not really help and I was getting weaker as I hadn't eaten anything for four weeks.Something else was concerning me now- my bowels had not moved for about a week.I phoned the gp on the Monday14th November to say I was concerned about lack of bowel movements.She said "Well you haven't actually eaten anything so there is nothing to get rid of". OK , I am a nurse and am not stupid.....so why did I accept that answer? In fact , why was I still lying in my bed weeks after taking ill , slowly getting sicker ? Maybe it was because in my heart of hearts I was beginning to realise that maybe there was something seriously wrong with me , but the gp was not too concerned, so maybe my fears were unfounded.My poor family must have been at their wits' end. They were buying me ice lollies , and fruit sweets , even baby food, but I just couldn't keep anything down.
Things began to take a turn on the Wednesday evening of that week - I had vomited for the umpteenth time that day , but this time things were different . I could smell faeces . It was only the once , so I ignored it ( idiot that I am) and promised myself that I would phone the gp in the morning. Morning came after a surprisingly vomit-free night . I fancied something to eat- maybe a piece of dry toast. I kept it down for all of five minutes then the vomiting started again. Bill was off work on compassionate grounds because I was unwell and he smelled what I had smelled the previous evening- it was definitely faecal fluid.I phoned the surgery and was told the doctor would phone me back.Two hours later (!) I got the call form the doctor.I explained that I was vomiting faecal fluid- she asked how I knew it was faecal.I explained that I knew what faeces smelled like. I was asked to come down to the surgery, so I got a lift from my sister-in-law.The doctor listened for bowel sounds ( the first time anyone had actually listened ) and said she was sending me to hospital as she was not happy with the "tinkly bowel sounds". I should explain that this was a different doctor-there are ten in our practice- and she seemed to know what she was talking about!
Next stop-Accident and Emergency at Glasgow Royal Infirmary!