Life goes on but the reality hits

29^th September 2011

So much has happened in the past month that it has made me very slow to put pen to paper as then it just makes it all the more real.  On the family front the boy has started a 4 year Science Degree, specifically DNA & Forensics science which includes Molecular Biology.  I am finding it hard to get my head around this.  If anyone had asked me what I thought he’d do I’d have said Art College, Graphic Design etc. as he is incredibly talented at art but no he says he’ll do that as a hobby!  He has settled into college very well, has made friends easily, threw himself into freshers week and is really enjoying it.  Some of his pals aren’t so lucky, some have ended up in Arts in UCD, didn’t get their first choice and this was the fall back option and have been wandering around wondering where they are supposed to be and missing lectures all over the place.  One of his pals has yet to find the law lecture she is supposed to be attending, actually spent an hour in a lecture only to discover it was the wrong one!  Another pal worked very hard to do a high points course and isn’t settling in at all.  He knows no one in the college and couldn’t get to grips with what was going on during freshers week and has since spent one lecture sitting in his car wondering what all the hard work for the LC was about.  Yes they went to a small school knew each other upside down but it just shows that the ones I’d have thought would have settled quickest haven’t and our boy has just grown so much in the past month it is wonderful to watch.  I always felt he would blossom when college started and this seems to have been the case.  He is in a small class, 32 now, as opposed to his pals being in lectures with 220+.  I am looking on from the side wondering who will stick it out or who will drop out.  It really has been a year of change.

On the 19^th August I went to 3 miu’s 5 times a week and lost my mind!  No literally, forgot an appointment with my dermatologist, started doing really weird stuff around the house and just went brain dead.  It drove me around the bend and put me in bad humour.  I was so determined to crack this that the following week my other half was on leave so we took off playing golf left, right and centre.  There was something demonic in me which was proving I was as good if not better than him.  We played straight through Mon – Thursday, and yes I physically collapsed on the Friday, however, my other half physically collapsed on the Thursday!!!  It did take me longer to recover though.  I just pushed and pushed myself that week, it did help that I did no driving and after golf would get into the car and fall fast asleep.  I ended up doing 5 weeks of this dosage before I returned for blood tests and to see the oncologist.

Food is still a big problem, can’t really taste anything and have no desire to eat, yet strong smells, of which there are many, are making me feel ill.  I am still very tired but have now discovered that the first week of a change in dosage is the worst, 2^nd still pretty awful but it gets more bearable as it goes on so it was with confidence that I would be increasing to 6 miu’s when I met the oncologist last week.

So went through the normal routine, actually beginning to wonder what is normal now!  Last Wednesday was one hell of a tough day.

Leave here, park eventually and head into him.  Hate it, I cannot tell you how much I hate these visits, just believe me I really hate it.  So very quickly taken into a room and the nurse comes in.  She asks how I am I relate all that has happened since last visit.  A dietician is mentioned; think I’m going to be referred just to see if they can suggest foods I can try to eat as it really is becoming a total pain.  Bu now I’ve lost a significant amount of hair but, thankfully have twice as much as anyone else to start with, it is not really noticeable.  I did however see my Dermatologist the previous week who pointed out my hair loss to me!!!

Blood results are back, now before I continue the one thing I’ve always been worried about is the effect this drug is having on my liver and I’m very aware that should there be any changes I could be in trouble.  However, my liver and everything else is fine it’s my neutrophils that are the problem.  They are supposed to be between 4-8 I’m just over 1.  Hang on say all that again please!  Neutrophils wtf are they???  When she said they were down I thought she’d say 3.5 but even I know, even though I haven’t a clue what she’s talking about, that slightly over 1 is waaaay down!  It appears I have neutropenia, I had to look it up, but in plain English, neutrophils are what help your white blood cells to fight off infection and I’m now at high risk of picking up everything.  I’m now in shock.  If anyone in the house even thinks they might be sick they have to see a doctor who will, I think, put them on an antibiotic.  Apparently by the time I realise I’m sick I will probably end up in hospital so this is to be taken very seriously.  I’m still in shock.  There is talk of putting me on a broad ranging antibiotic just in case, not happy about that I’ve enough stuff in my body these days.  I’m to avoid crowds and it just goes on and on.

She leaves and I am struggling to even try and digest this.  I did not see this one coming.

He then arrives in and the conversation starts again except now with a difference as he is unsure as to whether to leave me on the drug, increase the dosage as planned, or quite what to do.  He points out that I started out taking 9 miu’s per week, this then increased to 15 miu’s and the next step is 30 miu’s.  Now when he puts it like that!!!  It is decided that I am to try the 6 miu’s but to keep in constant contact with them.  I explain that there’s no point as I’ll be crap for the first week anyhow and it will be towards the end of the 2^nd week that I’ll know if I’m reacting badly.  He doesn’t think my body is going to be able to stand it, hmm my stubborn streak of I’ll bloody well show him, kicks in immediately, and although bloods are ordered again in 4 weeks he thinks I’ll be off it by then!  If I manage to stand it, I will, but if the bloods show a reduction in neutrophils in 4 weeks then I’ll have to come off the drug, let the neutrophils improve themselves and go back on a reduced dosage.

My understanding is this is what can happen to chemo patients from dose 3 on.  I know someone who had regular problems with her blinking neutrophils, used to get an injection into her stomach, have bloods repeated and it just meant next chemo cycle was delayed.  However, interferon doesn’t work that way, once I stop taking the drug I’m back to square one starting with 3 miu’s 3/7 and building up again which is why they don’t want me to take a break.

Well the family weren’t over the moon with me when I returned.  Hubbie said that it was ridiculous that by the time he knows he has a cold he is already infectious and anyway colds are a virus – my response was don’t shoot the messenger!  The boy, already exhausted by freshers week decided that night he had a cold and didn’t come home but went straight to the nurse in college the following day.  Luckily she wasn’t there as I know it was his body complaining that it wasn’t seeing enough of his bed!

So with all this playing on my mind I gave myself a 6miu injection last Sunday.  I’m black and blue! I did it again on Monday, Tuesday and again last night.  Final one this week is tonight.  I’ve been waiting for the side effects.  I am exhausted, but I did spend all last week walking around Killeen Castle at the Solheim Cup so probably no more exhausted that anyone else.  My leg isn’t good, very dead actually and heavy – blame the walking.  Stubborn streak again, I’ve booked us to go away for the weekend and am determined not to be sick.

So am I?  To be honest I’ve been fine up to last night when I kept waking with the most awful pains in my joints.  The paracetamol is right beside me but I am aware there is only so much I can take.  I’m back to my stomach not being great first thing in the morning despite taking the Imodium and my hair is definitely coming out, by night time when it’s all flattened it looks very thin.  I’m itchy, funny this is how my body was at the start, however, I am determined to enjoy my weekend.  I feel if I could just get one proper night’s sleep I’d feel so much better.  I take the injection late at night and have 1 litre of water drank by 11 the following morning.  After last night’s sleep I’d 2 litres finished by 11 and am now on my 4^th!  My rule of thumb is to give myself the injection, sleep if I can then drink drink drink to flush it out of me as quickly as possible.

Time will tell if this works for me and if my stubborn streak allows me stay on is.

It is hard!

Side Effects of Interferon

#18 Thursday 18^th August

Midnight with 2 Imodium.  Not drinking enough, have been told that I must drink between 2-3 litres every day and was doing great but slacking off.

It is now Saturday 20^th August and I’m still very tired and thirsty.  I must drink more.  Finding it very hard to get my head around the 5 injections next week and just a little worried about their effect on me.  I do find that having been so sick after the first 3 weeks it did help me get my head around all this but I don’t fancy feeling sick every day.  Food still a nightmare and I’ve lost just over ½ stone.  I’m not that big at the best of times and as weight is inclined to fall off me when I’m stressed have always carried an extra few lbs but this weight loss wouldn’t want to continue.  The hospital are monitoring me and have said they will put me on an appetite stimulant if it continues and also mentioned ensure!

So now that I’ve finished 6 weeks, albeit with a weeks break, of 3 miu’s 3 times per week of interferon I thought it would be a good idea to look in detail at the side effects and see how I have reacted.  I will do it again when I have completed my course of 5 injections a week etc.  The following information is taken directly from the interferon leaflet.  The particular drug I am on is Roferon-A

Doctor must be notified straight away if any of the following serious side effects are noticed

Develop signs of difficulty breathing, wheezing or hives

A decrease in sight

Signs of depression

Well I have had a problem with rashes and bites so have been taking anti-hystamine, sight ok signs of depression – well during the first 3 weeks I was severely fed up but felt it was a catch 22, not being able to eat, no energy and feeling sick, the weeks break seems to have got my head around this one thankfully

Other possible side effects

Fly like symptoms such as tiredness, chills, muscle or joint pain, headache sweating and fever – yes all of these except the headaches which I am glad about as suffer with migraines at the best of time.

Infections; pneumonia, cold sores and genital herpes – no to all

Blood and lymphatic system disorders; anaemia, reduced platelets, lower white cell counts.  Bloods are coming back fine so only one here is I’m covered in bruises especially my injection sites.  If I were to end up in A & E they would think I was a drug addict!

Immune system and endocrine disorders; autoimmune conditions, sarcoidosis – no to both TG

Gastrointestinal, metabolism and nutrition disorders; Anorexia and nausea, bitter taste, dry mouth and weight loss – yes to all apart from the anorexia.  Stomach pains, diarrhoea, vomiting, heartburn, constipation and flatulence – well have definitely had most of these hence now taking Imodium with each injection.

Low blood calcium, electrolyte imbalance, dehydration, diabetes and hypertriglyceridaemia – only one there is the dehydration, must get my water bottle!

Nervous system and psychiatric disorders; Headache, dizziness, pins and needles, trembling, numbness, sleep disturbances, nervousness, anxiety states, forgetfulness, drowsiness, confusion, changed or abnormal behaviour, depression and suicidal behaviour.  Vertigo, convulsions, stroke and coma – interesting actually to read back on this as have had the pins and needles, sleep disturbances, forgetfulness, drowsiness and numbness.  However not on a daily basis, well mostly but am writing everything down, sometimes though I even forget to write it down!  Chemo brain.

Eye disorders; Conjunctivitis, eye discharge and visual disturbances – another interesting one as had an infected cyst recently never thought it was down to the interferon.

Cardiac, vascular and respiratory disorders; Temporary low or high blood pressure, irregular heartbeat, slowing of the heart rate, palpitations, chest pain and heard attack.  Build-up of fluid in the lungs and a bluish discolouration of the skin or lips.  Hmm, have low blood pressure at the best of times wonder could this be added to my feeling of tiredness?

Liver and kidney disorders; Definitely ok here as these are both tested every 4 weeks I also know that interferon puts a strain on the liver which is why I’m unhappy having to take paracetamol also.

Skin and mucous membranes; Increased sweating, rash, dryness or itching of skin, psoriasis, runny nose and nose bleeds.  Hair thinning or hair loss.  I have sensitive skin at the best of times and need to cream daily, however, I have noticed it is dryer than usual.  I am also more sensitive to the sun and am getting burned with factor 50 not good!  Yes I get itchy and have regular nose bleeds again didn’t connect the two.  Hair loss – well thankfully I have loads of hair and my hairdresser said he would be happy if I lost some of it, it looks as if he is going to get his wish as there is definitely more than usual coming out.

Musculoskeletal disorders; muscle and joint pain, lupus, erthematosus, arthritis – very much yes to the joint pain

Other side effects; Flu like illness, tiredness, fever, loss of appetite chest pain.  Chest pain no but yes to all the others.

So there’s the side effects and my reaction so far.

On the other hand I am looking well but please if you meet me don’t comment on how well I look.  It really doesn’t help either me or others like me undergoing some treatment or other.  When people say to me I look well I often wonder do they doubt what I am going through.

 

Sick and worry about results, leaving cert results!

 

#15 11th August 2011 Midnight + 2 immodium

Absolutely exhausted on Friday and think my 2 games of golf this week and 2 days spend at last week’s Irish Ladies Open have finally caught up with me.  That evening I got severe pains in my joints.  Not flu pains these are more what I imagine arthritis to be like.  My bad leg is pure agony, pain started in the knee joint and moved up to the hip, eating paracetamol to help me sleep, cannot be good for me

#16 Sunday 14th August 1am

Well my plan worked, Sunday was a good day so obviously leaving the couple of days break from Thursday night is helping.  Took 2 Imodium again but thankfully they are working, pains in joints seem to be a new side effect plus another new one – dreadful nightmares.  One was the Maguire twins chasing me around a course with their drivers determined to murder me.  Sounds funny now but I woke up terrified.  My friend laughed and told me that they were too focused on their golf to consider me!

#17 Tuesday 16th August

Midnight again with 2 Imodium.  End up taking paracetamol during the day.

Tomorrow the dreaded leaving cert results come out.  Bob and I are very concerned.  He is a very hard worker who always goes down in exams.  He said today that he thought he’d got 350 but would be over the moon at 380.  Bob reckons he’ll do well I’m not as optimistic.  He deserves to do well; he has put the work in so if hard work stands for anything he should be happy.  Then on the other hand I remember his previous end of year results and know how badly he performs in exams and the worry starts again.  Bob asks how he did in the junior cert, Guys do you remember nothing?  He did ok, yes he got some very good honours but I decided not to tell Bob that the best honours he got were subjects he either dropped or were junior cert specific.  Oh finding it hard to sleep now.

Wednesday 18th August

Well Bob and I tossed and turned all night and eventually 7amfinds me up with coffee in hand watching the news and listening to the results trend.  Maths failures are up again as are the sciences and business results also down.  I am now feeling totally sick.  Get up and log on to see what the social media sites are saying in particular boards.ie.  The Same!  The Boy arrives down early and has decided he is going to drive into school on his own, he knows a few of his pals are heading down at the same time, however, his decision is not to speak to anyone until he opens the envelope.  The parents sit at home and wait for the phone call.  

OMG he finally rings and with a lot of emotion in his voice tells us he has honours in everything.  I am so happy for him;tears have been in my eyes since 7am and are now freely running down my face.  He hasn’t calculated the points yet so we decide I’ll do it on my iPhone app, he will do it in school on his calculator and it will be a double check.  420, couldn’t be, I go again, stop talking to me family, yes he has bloody well ended up with 420 points.  These results are honestly the best he has received in secondary school.  The principal and his teachers must be delighted and stunned and as for the career guidance teacher he’ll be on the floor as told me last October that his expectations were completely unrealistic.  I/ we are so proud of him.  Finally he arrives home grinning from ear to ear and I can hug him so hard I near hug the breath out of him – well no he’s 6ft 4 so I’m happy just to attempt to give him a hug!  The day passes in a whirl of calls of congratulations, fair play to his pals’ parents; the majority of them have been onto me equally stunned.  Of his group he has done the best by far and I think it is incredible considering the stress in this house since January that he has managed to hold it together.

So how did he do it and how did we encourage him?

He never put a foot wrong in school and the teachers knew his homework would always be done and that he would always have his books, so much that in 2nd year parent/teacher meeting they agreed with me that he was so good and quiet that they were inclined to forget he was in the class.  In my opinion the turning point came when he went to school in Australia for a month during transition year.  The boy had already been here in September but when our lad went back it was the following April/May and they were half way through the 1st year of their 2 final years in school.  The visiting Australians to Ireland were are very academic and focused and our Boy really loved the educational system when he went back.  When he returned home he was suddenly talking about college and study and I could really see a change in him from an academic point of view.  In 5th year he just went back and knuckled down.  He never crammed but worked steadily for the past 2 years.  Entering 6th year we told him that he was the total focus in the house and whatever we could do to support him and make his study space easier was going to be our job and then I got sick!  Best laid plans etc.  It cannot have been easy for him!  His school also give the option of taking an extra, 8th subject at the start of 5th year.  This is studied outside of school hours usually before school begins.  This was something we, as parents, didn’t encourage, as felt he would find it hard enough to get through 7 subjects even with maths and Irish at ordinary level.  A few weeks into 5th year, Frank approached him about doing Religion as an extra, he explained that there was a project involved and with his support felt it could improve the overall points situation.  We left the decision to him and he decided to take it.

At 5th end of year exams I think he failed it, or just about passed it.  I had a look at the paper and I couldn’t do it.  It is difficult.  At 6th year xmas tests he came home and said he’d failed it again and was giving it up.  I persuaded him to wait until the report came, he passed D1, again I persuaded him to hang in there as he could possible get a C.  At the parent/teacher meeting Frank dithered, answers way too brief, needed to work harder, he’ll probably pass.  Mocks come,another D1 and I feel he is now going to give it up.  I feel that it is only an extra subject and he is struggling with it, explain again he’s not far off a C but leave it up to him.  Weeks pass, I ask has he given it up, can’t I need a letter from you is the reply, I say nothing!

The bloody project – I discover he hasn’t done it.  Flip I offer to help him am told not to bother and a week later it’s handed up.  I’m told it wasn’t very good and it is just left at that.  His exam timetable is such that he had a week before the religion exam.  At this stage I am now wondering if he is even going to sit it and he admitted to me today that he very nearly didn’t.  So in he goes for the exam and Lady Luck shines on him – a section he had read for the first time, wasn’t studied in class, has come up.  So what did he get?  A B2 which is what really got his points up, he cannot believe it and is wondering should he have a look at his paper just to see how he actually managed it.

He now waits for the offers to come in on Monday from the CAO.  I’m confident he will get what he wants but he is worried, a lot of his friends are borderline for courses and I feel the negativity has fed into him too.  He has 70 points more than was needed for his course last year, however, last year was the first year of the course so it is possible the points will increase but I think he’d be very unlucky if he doesn’t get it.

Hard steady consistent work does pay off and he now knows it and it will be an ethic that will stand to him during life.

 

Sick of Interferon Already

 

#12 5th August

10.45pm plus 2 Imodium.  Good God I was up five times during the night, it is now 5.45am and I’m frozen, fluey and full of aches and pains.  2 paracetamol, electric blanket on to see if I can warm up.  7am now wandering around the back garden after hanging washing out, way too warm.  This drug really isn’t nice, all I want is a night’s sleep.

#13 7th August

Midnight plus 2 Imodium but at last have had a good night’ssleep, however am ravaged with a thirst, just cannot get enough fluids into me.

#14 9th August

Midnight and 2 Imodium but hey another good night’s sleep. I really do need my sleep or I’m like a bear for the day.  The thirst is still a problem and food a total nightmare, wonder will I ever actually enjoy food again.  Just have no taste for anything and have a horrible smell all the time.

10th August

Back into see my oncologist.  First problem is my bloods haven’t been faxed through despite this being confirmed.  Thank god for such an efficient secretary, she had it all sorted.  So firstly the lovely Sinead arrives.  Usual questions, how am I, what side effects am I feeling etc.  She is surprised at my thirst, my sugar levels are ok, but says she will monitor it and maybe do a repeat sugar test.  All my bloods are fine so everything looking good.  The lecture comes again, yes I am doing too much and they literally want me to go to bed every afternoon for a sleep.  Honestly cannot see that happening, however, I will try and lie down with a book and if I am tired I will then nod off.  Not too sure when that’s going to happen though but at least the thought is there!  

It appears that I have reacted very violently to the drug but seem to be stabilising now, you mean it doesn’t get any better?  No apparently not and once I increase to 5 injections a week I’m to expect to feel awful all over again while my body reacts.  I was misinformed by the interferon nurse; apparently it is imperative that I take the injection at the same time every day.  So taking it say on Friday nightand again on Sunday night is giving my body too little time to recover over the weekend.  I’m to decide whether to take it morning or evening and stick to that.  She says Monday – Friday, I say Sunday night to Thursday night, and my thinking being that this way although I will be tired on Saturday I should actually feel completely normal on Sundays before I start into the next week.  So back to the problem of lack of rest – she is genuinely worried that if I don’t start behaving myself I will end up in hospital when I go 5 days a week.  Oops I will try my best I promise.

He arrives in himself then, still not too sure about him and yet this is the guy that is supposed to be keeping me cancer free in the future.  I just don’t feel we have any rapport.  All my other consultants are very personable and chatty but this guy is full of business only.  Sometime lately I have been regretting not having had a second opinion.  Think once I was in the system too much happened too quickly which never really gave me time to think.  I know it is too late now as treatment has started but still the thought lingers.  An example of our relationship, which you may or may not understand, is that he agreed I had reacted violently and badly and that also my body may just not be able to cope with the drug, however, they would press onwards and see what happens.  So he told me to phone Sinead how I am next week with a view to increasing to 5 on 22nd August.  I commented oh that’s the day the cao offers come out; he immediately said do you want to postpone it so!  Actually didn’t really say it more or less snapped it, I said no just that the date was imprinted in my mind.  Now any other consultant I know or indeed I feel most people I would have this conversation with would have immediately asked did I have someone waiting for leaving cert results and what where they hoping to do.  They would certainly have made some small talk in my opinion and not snapped oh do you want to postpone so!  Maybe it’s just me but having a bit of banter and small talk with consultants does make things easier for me.  Whereas I do think both he and his nurse think I’m off the wall!

So plan is to start 3 miu’s 5 times a week on 22nd August – dreading it!

Back to the vampire in September and to see him after that, so looking forward to it.

Edublogs Awards 2011

I recently came across a thought provoking post by Michelle Moloney King which made me stop and think.  Every morning we get up, put those feet on the floor and go about our daily business.  People look at us and think “Oh they look well”, or “Isn’t she always such a happy positive person” or words to that effect.  Michelle’s blog yet again reminded me that everyone wears a mask of some sort.  Everyone is covering up something be it depression, an illness, a learning disability, a huge worry, there is always something.  So we must all remember that what you see is not necessarily what you get and if someone is a bit snappy today, you don’t know what is going on behind the face.

With this is mind I would like to nominate Michelle’s blog, Thinking Outside the Box, http://bit.ly/v4H8BS in the “most influential blog post” category  and also recommend that you follow her on twitter @moloneyking

You can review the awards here http://edublogawards.com/nominations/

The Christening Robe

So there I am with a small baby, actually he’s not small, he’s huge, as in buying his first winter jacket when he is 9 months old and I can only get a jacket for a 2 year old to fit him.  Anyway back to the not so small baby.  His christening was coming and I hadn’t a clue what to put him in.  There is no generational/heirloom robe on either side so I set off shopping.  Can I find anything?  Not a hope and yes his size does have something to do with it.  So after much pondering I make the decision to get a pattern and cut up my wedding dress.  So far so good.  So there I am scissors in hand, yards and yards of a wedding dress everywhere, sister in law giving me directions as to where to exactly start this cut and I can’t do it.  No matter how hard I try and bearing in mind that I really want to do it, I just can’t.  So sister in law departs with my dress and returns the following evening with it all in pieces.  Strange how something so big reduces to something so small with attacked with a dressmaker’s scissors.  I nearly cried but no, my decision, my baby boy was going to look beautiful in this christening robe.

Many hours later the robe is finished and I try it on him.  It fits and looks lovely though quite modern.  As I look lovingly at him, hoping he doesn’t puke all over it, I wistfully dream of the future grandchildren and great grandchildren and maybe even another generation wearing my wedding dress as their christening robe and I am happy.

Three nights before the christening, there is a knock on the door.  As I answer I see this quite elderly lady with a rather large gift.  I haven’t a clue who she is.  She enquires after my husband by name and when he arrives introduces herself.  I can see a look of recognition in his face at the name but I’m still clueless.  To this day I wish I had remained such.  He welcomes her in, offers the usual tea and coffee and we all sit.  Then she tells her story.  It comes out that she is a distant relation of my husbands and like with most families there had been a family row and her particular branch of the family broke away.  This row occurred a couple of generations ago, so long ago that no one knows what caused it.  This woman was highly educated and married but sadly had never been blessed with children.  Within her branch of the family there was a christening robe that had been used for many generations but which she was now in possession of and, having heard, on the grapevine, that we had a christening coming up she decided to gift this robe to me as apparently it had originated in my husband’s branch of the family and she felt it was time to rightfully return it to its correct owners.  With that she handed me the package and out came the most beautiful Victorian christening robe.  This was the genuine article.  It had been very carefully packed and preserved over the years and it was so fine, it was like holding a spider’s web.  There were tears in her eyes as she saw me ooh and ah over it and then the reality hit me.

I’d just cut up my wedding dress and made it into a christening robe.  What was I going to do with this one?  This very elegant lady said that she would love to see our son christened in it and asked if she could come to the church on Saturday.  I am now beginning to panic and my husband can see the hysteria in my face.  Very quickly, thinking on my feet, I thank her sincerely for such a lovely present but sadly point out that our boy is very big and it is unlikely to fit him.  She assures me that it will definitely fit him although we may have to leave the back of it open – it is yards and yards of lace.  My husband tells her that whereas we would love to have her in the church it will not be possible as we are only allowed a certain number but that she would be more than welcome back in the house afterwards – little white lie.  I can see he is plotting something.

After our visitor leaves I’m in tears.  Having originally wanted a family heirloom now, I feel, I have made my own, and then been landed with this magnificent robe that symbolises the end of a huge family row.  Oh what to do?  We decide to try the robe on our son, hoping it won’t fit – it does, of course.  I phone my sister in law and my next door neighbour to come and have a look and help me make the decision.  They both say that this Victorian robe is such a work of art that I must let our son wear it.  I finally go to bed tossing and turning all night and wake up with a decision made – my son will wear my wedding dress which will be our family heirloom!

Saturday arrives and we all troop off to the church with the baby looking tremendous in my robe.  My husband has the wicked idea of changing the boy into the other robe as soon as we get back from the church and that way when the Lady comes to visit she will know no different.

The ceremony goes well, the baby doesn’t puke and everyone is happy.  As we are holding the baby walking back down the aisle about to leave the church my husband stops dead.  I ask him what’s wrong and he says “look” oh no there is the lady.  She had decided to catch us in her beautiful robe as we left the church.  If the ground could have swallowed us up at that very moment I would have been happy.  I nearly died.  Once again, with quick thinking, my husband apologised but explained that the baby had been sick just as we were leaving for the church and we had no choice but to change robes at the last minute.  I, meanwhile, felt sick to the core.

So what happened the Christening Robe/s.  I packed them both away carefully with other bits and bobs from when the boy was a baby for him to look at in adulthood and for him and his partner to decide which would be their christening robe.  9 years later we moved house.  As usual there was a massive de cluttering in the old house, runs to the dump etc.  Over the coming months I was sorting out my attic in the new house and find the box with the robes.  I smiled to myself thinking back on the panic the week of the boys christening and open the box to look at the robes and see are they both as good as I remember.  They are not there!  They have vanished!  I close the box, I open it again, I empty it, I re pack it but no robes.  Other items I packed away with them are but no sign or sight of either robe.  What happened to them?  I haven’t a clue.  Every time I’m in the attic I look again just in case they have reappeared but, sadly no.  Where are they?  Who has them?  How did they get them?  I would give anything to know so if you come across someone with 2 christening robes, a modern French lace one or a very delicate, magnificent Victorian lace one please ask them where they got them.  The Robes now have their own story to tell

Life Goes On

#10 1^st August – White Rabbits!

Here we go again, 9.00 3 miu’s plus 2 paracetamol plus 2 Imodium – they are taking no chances with me!  By 11 I’ve 2 litres of water drank, poor bladder in shock!

#11 3^rd August 8.00 3 miu’s plus 2 paracetamol plus 2 Imodium and off to the vampires who decided to take 5 vials of blood.  Excellent nurse did it she actually found a decent vein without much prodding.  I told her to go and get a lottery ticket!  I’ve been fasting since midnight as my gp decided to do my cholesterol and sugars too so she’ll have a base level. Forgot to bring my water with me, am very thirsty, and managed to get some in here.  Home to drink, have breakfast and then I decided to see if I remembered how to play golf.  Played 15 holes, was in a total lather of sweat by the end of the first.  Joined up
with 2 beginners and we played at a very slow pace which really suited me.  Drank another litre on the course however bladder really not happy, let’s just say the bushes were well watered!  I believe this is going to continue for about a week till it gets used to all the liquid.

So it’s been a rough week and a bit.  This drug really did floor me.  I really want to give it my best shot but never expected to feel this crap on it. I am going to have to force myself to take things easier and to pace myself.  I enjoyed the golf today but am now lying on the bed while I type this. On a positive note whereas I have found people on the internet who have
been on this drug at some stage or other I have finally found someone in Switzerland who is on it now.  I think she is about a month ahead of me and is also on a different dose – 3 miu’s 3 times per week for 18 months.  God we’re back to the doctors differ again, I find it very hard to understand why there isn’t a set protocol for this.  Last week I felt I’d have been happier if I was offered the high dosage iv for a month then a maintenance dose for 12 months, don’t offer that here, as at least then I’d be over the worst of it.  Anyway back to
my new Swiss BF I’m hoping I can learn some tricks of the trade from her and that between us we will be able to keep each other going.  Already she says that she finds it easier to take at night so might give that another shot, excuse the pun, to see if with the Imodium it makes a difference.

As anyone who has followed this knows I’ve had many surgeries of the years and I’ve always just got on with my life.  This time is different.  I look back at the months when I was post op, but still playing and organising golf, with envy even though I’d a leg hanging
off me.  Now I’ve no surgical wounds to recover from, leg still dodgy though, yet my life is more on hold now than ever.  I know that interferon is the only option I have apart from the wait and see approach, but God it is hard.  I’m constantly tired; it’s like being hit with a sledgehammer.  We are talking about holidays but I’m really not comfortable going away feeling so crap and nervous in case something was to happen again. We are looking forward to the end of treatment and have decided we are going to have a really good holiday.

Meanwhile life goes on.

The Boy returned in one piece from Ayia Napa though with no tan – knew there wouldn’t
be one.  Like the last time I was flattened, something else in the house broke, this time the dishwasher, so again on the internet buying one unseen, hope its ok. LC results out this day 2 weeks, see life carries on as normal.  It is very important to me that I carry on as normal too and keep the family uplifted and everything in the house running smoothly.

I just don’t do sick!

Reality of the side effects of Inteferon

Played 10 holes of golf in a bbq team event last night.  I couldn’t speak for tiredness at the end of it.  Bed as soon as I got home.  Today I am still tired, though I think the word is total fatigue.  I have never experienced anything like it.  All my joints are sore and it is pure will power that forces me to walk.

#3 – 10.00 Main side effects are lack of body temperature control, I’m either in a lather of sweat or else have winter jumper on despite it being 19 outside.  Fatigue, fatigue, fatigue to the extent that when it hits me I am unable to physically speak!

#4 – 09.00 12^th July.  Played my first 18 since this started yesterday.  Played early and well but fell asleep on way home then slept for another hour when we got in.  My body clock seems to be all over the place.  Went for early injection this morning to see how I am tomorrow morning as would like to get back to my usual Tuesday mornings golf.  Within 4 hours I was tired again and cold though no one else is saying it’s cold.  My big problem is food.  The thought of cooking turns my stomach, I decided to do stuffed chicken supreme with vegs that I like, just about managed to eat the chicken.  On the positive it is protein.  Food could end up being a real problem as if I’m not able to eat properly my energy levels are going to be down anyway which is going to put me in a catch 22 situation.  Took Rodney for walk around the block returned home and slept for 30 mins.  I really don’t like this feeling!

Heard last night of a 6yr old little girl who was diagnosed with stage 111 MM when she was 4.  8 operations later and her parents are fighting to get her onto a trial.  This really is an extraordinary disease and do you know it kills more people in the UK that cervical cancer.

14^th July – I’m having a tough time dealing with all of this lately so have decided to adopt a song, it has become like my anthem and something I can draw on.  I have always felt strength in music and it often brings me to tears but I do seem to get some strength from this one http://youtu.be/otuwNwsqHmQ

#5 was 9am yesterday morning.  I was exhausted after golf on Tuesday evening so had to take yesterday’s quick as had to go to a funeral at 10.  We walked down and then I broke out in a total sweat in church.  Afterwards I met a pal for coffee, all went well until they started doing their lunches and the smells got to me so had to leave promptly.  Two very strong drinks, probably not allowed, last night then bed.

Today The Open is on, so an excuse to have a lazy day and watch it.  Took Rodney for a walk, he didn’t do so well but I want to keep him walking as much as I can.  I watched Marley and Me last night and started laughing more than I’ve laugh since January and ended up bawling my eyes out.  I had read the book so knew what was coming, oh but it was just so sad.  Asked The Boy today if he had watched it, he has, well almost, he has
seen it 3 times but turns off 15 minutes before the end!  Actually I’m very proud of him as, totally off their own bat, he and his pal gave blood yesterday.  Tomorrow I’m due to play golf, forecast awful so fingers crossed it really doesn’t rain that much.  I’m due to meet a pal who contacted me by text during the week too embarrassed to phone.  She wanted to meet up and I suggested golf, would prefer to play and concentrate on that stupid little ball than sit and chat, I’m just too emotional at the moment and I know it won’t take much to tip me over.

Oh it is so hard; just wish I had more energy.

The Boy just gone off to see Harry Potter!

#6 15^th July, 20.30 with 2 paracetamol.  Woke up at 5.15 feeling totally crap with a really sick stomach.  Dozed till 8.30 but 11 feeling again as if I’ve a really bad dose of flu with all the aches and pains and chills.  Took another 2 paracetamol but am exhausted tired.
Really thought that by taking injection at night it would be easier.

#7 18^th July, 9.30 with 2 paracetamol.  Really not feeling good at all but feel I’m in a catch 22 situation.  Very tired and absolutely exhausted, however, if I can’t eat properly I am unable to get sustenance into me and therefore my sugars are very low.  Met Jane and went for a walk around Rathfarnham Castle, by default ended up doing a tour of the castle – we opened door to tour instead of café and they got fierce excited at the thought of 2
people about to join the tour, we just couldn’t say no.  There actually was no one else on the tour either.  The tour lasts an hour and was actually very interesting.  Fair play to
the OPW they do seem to do things right.

Boy went off on his LC holiday yesterday to Ayia Napa.  The general feeling is that these holidays are a total nightmare and a huge worry but funny enough I’m not worried about
him at all.  He is well travelled indeed spent 6 weeks in school in Australia in Transition Year so I feel he is sensible enough.  I’ve no doubt that there will be lots of drinking and not great eating and don’t expect to see him home with a tan but on the other hand I think I’ve said often enough about the dangers of swimming when drinking etc. that some of it must have stuck and hopefully should he decide to do anything out of character just maybe he’ll hear my voice whispering in his ear!

19^th July decided to get up early and head to Wexford.  Worked like a mad woman cleaning windows inside and out and generally making the house look more lived in.  Food still a problem.

#8 20^th July 9.00 with 2 paracetamol.  Continued my mad cleaning venture today, really feeling very tired but I’m determined to be able to carry on and beat this.  If only I could start eating again.

21^st July – Ooh not feeling so hot today and ended up taking myself off to bed.  I often wonder do I actually have the flu and is this all a coincidence.  Had a really hot bath and took a lemsip heading to bed.  Seriously wondering if I’ve overdone things this week.

#9 22^nd July – 9.00 plus 2 paracetamol.  Since I started this treatment I’ve had diarrhoea
every morning till about 10 but today it hasn’t stopped.  Had arranged to play golf, which I did, and it was a nightmare.  Nothing staying in stomach and I’ve pains and aches  everywhere.  It is 18 deg outside and I’m absolutely freezing.  Took 2 more paracetamol at 13.00 so I could play golf.  Beginning to think I may be dehydrated as notice I’ve more or less stopped going to the loo.  Now when I have a drink its going straight through me anyhow.  This is not good and I know I am not well.  Off to bed with another lemsip to see if I can sleep.

23^rd July – absolutely no better and cannot eat a thing, even liquids are a problem.

26^th July – Been really sick since Friday and knew yesterday I was in real trouble.  Didn’t bother phoning the hospital over the weekend but phoned the oncology nurse yesterday.  Just my luck my oncologist is away so she said to get to my gp who will do bloods and bring a sample, she, in the meantime would speak to the on call reg and get back to me.  All turned into a bit of a disaster, saw a locum who really didn’t know what to do or say, eventually gave me more Imodium, have been taking these at home since Saturday, and a script for Flagyl, weird as I know I don’t have a bacterial infection.  Needless to say stopped treatment this week.  Nurse eventually phoned back and is ringing a script into the chemist for Lomotil and Buscapan.  She told me not to take the flagyl!  I am to try eating dry toast and sipping warm water.  She will keep in contact with me during the week and if I don’t improve will bring me in.  I feel I am so badly dehydrated now that if I
were brought in and even put on 1 bag of IV I’d pick up quicker.

Anyway it appears I let myself become too dehydrated.  I am not a great one for drinking during the day, never have been, but it has been stressed to me that while I’m taking the
interferon I must drink as much as I can and flush it out of my system as quickly as possible.  The view is that I let it build up too much in my system and pushed everything overboard.  I will no longer be able to eat spicy food but a bland diet and low fibre foods.
This is going to be difficult, not that I’ve much of an appetite but every so often I do crave something tasty.  Last Thursday I cooked chicken with black bean sauce with fried rice; it
was gorgeous but appears to have totally tipped my digestive system over.  I also noticed over the past few days that I appear to be losing more hair than usual – my hairdresser will be delighted as he says I’ve too much! So just have to wait and see how the week goes.

By Friday I’m feeling a lot better and we decide to go out for a nice meal.  The Lobster Pot in Wexford is where we decide to treat ourselves.  I’m not madly hungry but do enjoy it as am looking on it as my last decent meal out as plan is to start again on Monday.  Only problem now is I’ve developed an infected cyst on my eyelid.  Every get the feeling you were falling apart?

Woke up on Saturday and the cyst had ruptured itself during the night however now my gland is very sore leading to pain in my ear and throat.  Don’t know if this is all connected or have I just picked up something else.  I absolutely hate being sick!

Some Facts about Malignant Melanoma to Educate Not Terrify

9^th July – My Girl’s 23^rd birthday!  As I type this I have just learned that this cruel disease has taken a young mother and left behind a broken hearted father with an 18^th month old baby.  This disease does not discriminate and there is no room from complacency.  At the end of the day it doesn’t seem to matter how deep your MM is.  You can present with a 1mm which, on paper, should mean a grade 1 cancer but upon further investigation, which they don’t actually do for <1mm it can already have spread and you can be graded 4, on
the other hand you can have a very deep aggressive MM and upon investigation discover it is in situ and end up being grade 2 due to the size of it or 2b if it is ulcerated etc. There is no timeline and absolutely nothing predictable about this cancer.  There is a high rate of recurrence and the best advice for it to be caught on time, yet how can this be so when even the tiniest can spread causing death, the biggest can stay in situ and other people are grade 4 and still living. As one of my consultants said to me with this type of cancer a grade is just a number and means nothing.  Because everyone acts differently unless a patient is very far advanced there is no actual timeline.  It is a cruel disease, affects all ages, and doesn’t seem to matter if you’ve never been sunburned or used sun beds, although doing both puts you at higher risk, yet babies are being born with it and people are being diagnosed with secondaries with no primaries being found.  I am finding it very hard to get my brain around it.  Here is a young mother gone, last month a newlywed husband passed, a very ill teenage boy is being given a very special treat by friends today, others are struggling on, in and out for check-ups constantly playing the waiting game for biopsy results of yet another questionable lump, bump, mole etc. being removed.

Does it, will it ever go away?  Sadly the answer is no.  Once you have this you have a life sentence waiting for the next one and hoping, like me, it will not have spread.  God this sounds depressing, it is, however I do not apologise for writing it if, hopefully, it makes just one person self-aware of any changes on their skin. It is not meant to terrify just to educate.  So check yourself regularly and wear high sun protection factor 365 days a year. Reapply every 90 minutes.

Believe me you do not want to be where I and other melanoma survivors are!

Interferon Starts & Hurtful Words

5^th July – Well nurse finally arrived in afternoon so morning was knocked out but did get out for a walk to pass the time.  She arrived full of information – not !  Apparently she should have had a pamphlet and a diary for me as well as other information but muttered something about cut backs and it being start of month everything was in short supply.  I did however,manage to snag a carry bag from her which is great as it means my medication, which must be stored in the fridge, will not be on view to all and sundry including the Boy and his pals.  It also means I can travel with it just will have to put a freezer pack into it.  She kindly gave me a needle disposable unit, I already have one from the hospital but figure 2 would be handy for travelling etc. – I’m learning on my feet.

So very matter of factly she said lets go.  She showed me how to open the syringe and the
needle parts, how to break the pieces off them, how to assemble them etc.  It was funny as everything she tried to get me to do was jammed so just hope I remember how to do this on my own.  She went through the leaflet that came with it, already done that and said off you go I can’t really show you as I’m left handed.  Ok so I did it!

#1 3miu’s 14.30 5^th July

16.30 feeling very tired but putting it down to releasing the tension of the past few days

18.30 feeling very cold, check temperature it’s 18 outside

19.30 now in bed with electric blanket on and my hands and feet icy to touch.  Feeling very achy with pains in joints, try to sleep, doesn’t work hear rest of family downstairs. Take 2 paracetamol

22.00 getting too hot now throwing covers off me but can’t settle

23.00 given up trying to sleep.  Downstairs in back garden cooling off with strong drink in hand.  Thinking this is great I can at least have a drink but half way through I’ve had enough!  Finally take myself back to bed and eventually fall asleep.

6^th July – feeling shattered as if I’m getting over a dose of something.  I slept quite
well in the end apart from waking every now and again just too hot.  When I finally woke this morning I was drenched in sweat as if I’d broken a fever during the night.  I really hope that these symptoms ease then disappear as don’t fancy these regularly.  The interferon nurse did say that the harder the symptoms the better the drug is acting so I suppose it is a double edged sword. Went back in this morning to re-introduce myself to my new GP.  Have to say she really is lovely.  Told her about last night and she laughed said she’d have done the same i.e. drink!  She was surprised at how well I’m holding it
together considering what’s been going on over the past few months but laughed and said I looked great as if I’m just back from holidays.  Might sound funny, but she is spot on, I am looking well and am feeling great which is why the interferon is so bloody hard to take.  I’ve arranged to get further bloods done with her, finally some small saving and she has added on sugars and cholesterol so she’ll have a total base level with my health.  I told her that if I ever turned up and said I was sick she was to take me seriously as I just don’t do doctors and get fed up with people wasting their time over small issues.  I prefer to try and fight something myself and am very lucky in that I am never sick.  Off now to meet pal for coffee and try to get my life back into some type of normality

7^th July – Well it was great to meet my pal and have a life, however, when I returned home I distinctly felt ill.  This might sound off the wall but I think my interferon might just have coincided with me getting a heavy cold.  I understand that I’m to expect flu like symptoms, however, I didn’t think this meant sore throat, coughing, sneezing etc.  If it does it will mean boxes of tissues for the next few months.

#2 3miu’s 7^th July 8.45 decided to take as early as possible as I want to be ok for golf tomorrow evening.

11.00 Although feeling very tired decided to go out for a walk.  After about 100 yds., if I were on my own I would have turned back but said nothing and kept walking as OH was
with me.  I really was forcing one leg in front of the other. One noticeable change is I am cold and although a nice day walked wearing a heavy jumper.  Got too hot then but decided as I was close to home to keep going.

12.00 Returned home tired and feeling like lying down but decided instead to stay up and do some stuff on lap top

15.00 Head over to the shop and bump into C first.  She is surprised to see me wearing a jumper and feels my hands and they are freezing. In conversation with C I said that one thing that has happened this year is that I’ve lost some of my confidence.  I’m ok with people/friends who know what is going on and also happy in golf club where I’m just let do my own thing, but I have turned down a golf outing with some people from my old club.  They know I’ve been ill but haven’t been in contact and I do feel when I’m out meeting people who know but haven’t bother contacting me it’s as if I’m on show and they are looking at this person with cancer again.  Some people are just gawkers and it has really knocked me so I’m happy staying within my own circle.  I am not a circus freak!  I then continue into a shop and bump into A that I haven’t seen in a long time.  The very first thing she says is “Oh My God have you had something more taken off
your face?”  Yes! “Good God will the scar fade it looks terrible”!!!!  I felt awful, considering what I’ve gone through over the past few months, add to that the tension of starting interferon on Tuesday and my conversation 5 mins before with C I really was upset.  I didn’t let on and thought afterwards that she’s lucky I wasn’t wearing shorts and she’d
see my 2^nd shark bite in my leg.  Even still, a few hours later, I am totally shocked at her
reaction.  Yes I have a scar, well 2 but they are more or less joined up.  I was wearing sun glasses and the scars run across the bridge of my nose, God she really was looking closely, I have been massaging bio oil into it and the odd person who does make a comment makes a really positive one.  This throwaway remark has knocked months of positivity out of me.

17.00 Dinner is turning into something very light as I just can’t stand the thought of eating something heavy.  So a lovely salad with Ceylon chicken.  Family seemed to like it but the Girl got her oar in and wondered if it was enough for the Boy.  Grr even the thought of cooking something rich makes me feel ill.

18.00 Changed into tracksuit and socks as very cold.  I am tired but I think I managed today well,  It will be interesting to see how I am tomorrow