And so it starts...

I know I said in a previous post that I thought my impending chemo was a bit like childbirth in that you approach it with trepidation, a little nervousness and dare I say it, a tiny bit of excitement (yes I know that sounds mental but at least it felt like I was making progress and fighting off any nasty invaders). 

Well I was right. 

I had no idea what to expect.

NOTHING could have prepared me for what was to come which is just as well or I may never have turned up.

My appointment was booked for 11.00am.  We arrived in the car park ten minutes early.  I was happy to sit there.  Not until my allotted time.  I would have just sat there.

Luckily Jeraldine decided it was far better to head inside.  Face up to it.  Meet it head on.  So we did.

They are so welcoming in the Chemo suite, rather anonymously named Room 10.  Greet you by name, or your preferred name, whichever you elected to be called on the copious sheets you fill in prior to treatment and say "take a seat" as if inviting you in for a cuppa and a chat, which in a way I suppose it is! 

The only difference is, and this could only be me, after all I have led quite a sheltered life, but generally when I turn up at a chum's house for tea and a chat someone doesn't walk up to you with a needle and insert it into a vein.  Call me naive if you like but it was about here the similarity ended.

Don't get me wrong.  The wonderful volunteers bring endless cups of tea/coffee/water/cup-a-soup and if you are unfortunate enough to be in there over lunchtime, that is provided too.  And there are biscuits too, but the fact that you are tethered to your chair by an IV takes away the sitting room feel a little bit...

Firstly I was hooked up to a saline IV to ensure the line was in correctly and running smoothly.  At this point I was approached and warned that unfortunately the pharmacy were running a bit behind and my drugs wouldn't be up until after lunch.  Pardon?  I had a momentary flash of annoyance - my time slot was booked, it was my first dose so why couldn't it be ready for me?  I then very quickly remembered that the drugs have to be made up as and when the patient arrives in a fit state to receive them as each dose costs several thousand pounds and only has a short shelf life.  But still.  Two hours?  We had nowhere to go so decided to stay put and chat.

I ordered and ate my lunch.  Jeraldine set off to the canteen, bought then consumed what she declared to be a delicious sandwich.  Although her enthusiasm seemed slightly out of ratio with that usually reserved for a two bits of bread encompassing a dollop of chicken mayonnaise, she explained that she so rarely ate sandwiches that it was a treat.

Lunch was followed by some anti nausea drugs sent down the IV then by more saline.  Finally at half past two my chemo drugs arrived.  A blue tray was brought to me for me to check that my name and the drug name were correct on each one and so my chemo nurse started to inject them.  No.  My chemo nurse does not, as it would appear, enjoy inflicting misery on her patients.  She is lovely.  Apart from the whole injecting thing of course.

I felt absolutely fine.  Even took a picture of the drugs going in.  Once again, not really something I thought I would be doing but hey, I don't have a hold on what is "normal" anymore. 

At the end, we ran through the anti nausea drugs they gave me, I wrote it all down meticulously and we set off home.  I felt absolutely fine.  Almost an anti climax.

And then it changed.  In the drop of a hat.  I went from sitting on the sofa feeling absolutely fine to all of a sudden feeling the skin on my face become tight, a pounding headache start and the most gut wrenching, tearing, frighteningly out of control nausea I have ever had the misfortune to experience.  I simultaneously felt paralytic and hungover.  So badly hungover that I should have been in The Priory.  Hot flushes.  Skin feeling like it was creeping off my head.  Mouth like the bottom of the aviary at Whipsnade.  In constant, unceasing, never ending waves. 

I can honestly say I have never felt so ill in my life. 

Somehow I did sleep a bit that night although it was restless and so uncomfortable.  The dawn however brought no respite in fact the birds have never tweeted so loudly and they started at 3.46am!

Tuesday was a day of horror.  I can't write about it yet.  Maybe, many years from now I may be able to describe it but for now let's just say the hell never ended.  I spoke to the chemo nurses at the Wooden Spoon several times.  They got prescription after prescription made up for me but unfortunately 3 out of the 4 items they asked for were out of stock at my surgery and at the chemist.  By the end of the day they had said I should come in at 9 o'clock the next morning and they would try and help. 

I had another horrendous night and started Wednesday in much the same way (with my head down the loo).  As soon as Ian got back from taking the monkeys to school he scooped me up and drove SO carefully to the hospital.  I was greeted by name by the nurse who I had spoken to the day before - I looked THAT bad. 

I was swiftly hooked up to an IV to rehydrate me, given an IV of anti nausea and handed a suppository to deal with (oh the indignity, but if I couldn't keep anything down, I suppose it was another way of getting drugs into me) and then left in a side room of the suite to sleep.  And boy.  Did I sleep!

By 2 o'clock, when they needed the room for someone else I was feeling more normal but was sent home with loads more drugs and told to take them.  Take them all!!!

I have also had to overcome my needle phobia as I have had to inject myself every day - Ian keeps on offering but I have so far managed to self medicate rather than run the risk of being a practise heifer!

There have been lots of tears this week.  The drugs (I blame them, not me, obviously) have sent me on a roller coaster of emotions including tiredness, panic and depression but also waves of determination that wash on the shore and fade but, thankfully, like waves, they too come back. 

One major low this week was the news from Kathryn that her beloved Mum, who has battled with the disease for nearly two decades, has sadly lost her fight and passed peacefully away at home.  Obviously my main concern is for Kathryn and her family as they deal with their loss.  Although I would be lying if I said it didn't scare me a bit.

I do now know that the nausea can be managed.  I also know that I can get through it and feel human again.  I have also been promised that they will not let that level of nausea happen again, even if it means they have to load me with so many drugs that I sleep for five days, I will not feel like that again. 

So.  Fingers crossed.

And Rest In Peace, Christine.

Job satisafaction

Where to start today?  Do I just ignore that niggly little butterfly in my stomach and carry on like normal?  Everything is carrying on as normal around me.  Ian is working flat out - no staff on to help this week end (WHY?) and the children are completely oblivious which is obviously a good thing although perhaps I should sit down with them at some point today to warn them that Mummy may not be feeling 100% this week.  Mind you, judging by how "well" Poppy took the news that my hair is going to fall out, maybe not...

Or do I admit that I am a little bit nervous? 

It is hardly a good selling point that they list 101 possible side effects, none of which would be a symptom of choice.  Or that before they even start infusing the chemo drugs they give you half an hour of anti nausea drugs.  Or that they threaten you regularly with making sure you never ignore a temperature of 37.5C or above.  I never take my temperature.  I know when I feel rough through illness.  I do take the children's temperature if I think they feel a bit hot or are not very well and sometimes even when they are grumpy and irritable to see if it could be an explanation!  Apparently it is too late once I start feeling rough - I need to make sure I catch it sooner than that.  Easy.

I think the two members of the family who are going to take it the hardest are Bovril and Bisto.  They are used to being able to cuddle me pretty much when they feel like it and they usually follow me EVERYWHERE!  At times Bisto is like a toddler who will never let you out of his sight.  If I am standing at the kitchen unit he lies on my feet.  I leave the kitchen to go to the loo and before I am even seated he has pushed the door open, sits down and watches, leaving only once I am fully clothed again and walking out.  I honestly thought that now Popps and Alf had grown out of this stage, I may once again be able to do things on my own again.  But, no. 

I think I have touched on the subject of treatment for cancer being like pregnancy before.  If not, here goes: everyone has some knowledge of it or they know someone who has been treated for it, whether it was someone very close to them or their Great Aunt's sister-in-law's dog-sitter's brother-in-law's third wife's sixth ex-husband.  Sadly most people are not so lucky as to have only ever had such a distant contact with this horrifically common disease but you get my drift.  Anyway, back to the point I was making - everyone thinks they have the right to tell you the side effects suffered by themselves or their contact with loads of helpful hints on how to deal with them (some of which are quite frankly ludicrous) but most of which are taken on board and stored away, for example, eat strong mints to take away the revolting taste of the drugs (no, they are not oral but believe me, if the dye for the CT scan was anything to go by the taste enters your mouth instantly!)  And when I was initially struggling with the concept of having poisonous chemicals injected into my bloodstream, a fellow survivor (of 19 years) said she visualised it as Pacman whizzing round her body eating up any rogue cancer cells.  What a star.  I don't think she will ever realise how much that one comment helped me start to deal with my fear. 

The interesting part will be later this week when I have to inject myself every day with immunity boosting drugs which will stimulate my bone marrow to make more white cells.  I am a self confessed needle phobe.  It is very comforting how many people, either with or without any medical expertise, have offered to come and inject me.  Or maybe not!It depends on how kindly the offer was made and how much gleam was in the offerors eyes!  Ian offered but was turned down.  I have seen how the average cow is injected, you give it a good slap on the arse then stab the needle in.  Enough said. 

One cow who deserves a good injection is Daniel.  Typical that my last chance of helping with the stock checking was hampered by an all out search round all the local roads and fields and even along the canal tow path for a bull that had vanished from his field, only for him to reappear half an hour later.  Not a very satisfying job.

Do you know what?  Even if I am nervous, it is essential that I do this because I intend to be here for loads more years.  In fact I celebrate every time Poppy tells me I am annoying her.  I feel I am doing my job properly and spurs me on to fight through this and carry on annoying her for many years to come.

That is job satisfaction.

Impending Doom... or is it?

So, I'll admit it.  The nerves are setting in about Monday.  It is worse than impending childbirth the first time round when everyone has bombarded you with advice and how they got on with it and what happened to them and what they would have done differently, plus there are all the other side effects or things that could happen that you can't help but think about and worry about (just a little bit).  Yet you have no idea how it is going to affect you or how your body is going to react to it so you feel completely out of control of the situation. 
I have therefore decided with Ian that come Monday, a friend of ours who has been through exactly this twice is going to take me for my first chemo session.  The main reason is that she will have a better idea of what is going on, what the routine is and what to expect.  The other reason, although this should probably be the main one, is that I am less likely to shout at her than I am Ian.  I hate to admit it but nerves make me shout.  At Ian. 
In the meantime, I feel like I should be running around like a mad thing preparing frantically for immobility, nausea and impending doom. Either I can't face up to it and am in serious denial that I am going to feel bad or my fore thoughts are correct and life is just going to carry on, with tired days.  Nice idea.  Let's keep the fingers crossed on that one.
I have had my hair cut to less than one inch in length in an attempt to prepare myself for having no hair.  When Ian asked the oncologist if anyone ever kept their hair without the cold cap he shook his head.  Refusing to believe this Ian queried him again - ever the optimist - but was quickly set straight as the doctor pointed out that in 9.9 of 10 cases the patient loses their hair.  The 0.1 is there as the "medical get out clause" caused by randomness.  On a no hair theme - the TV is on as I type and there is yet another advert running for the "no-no hair removal system".  Not sure I'll be wasting any money on that for a while...  But seriously, it's negative advertising calling your product No-no, surely? Why would you buy something that told you not to?  Quite apart from it sounding like a type of torture.  It plucks your hair out!!  How is that less painful than waxing???  As I say, not a problem for me for the rest of this year!  I may miss my eyebrows but that is a small price to pay for not having to shave my legs or anywhere else for that matter.  I can always draw them on if I become that bothered.  My eyebrows, that is.

oopsy daisy

So we have made some headway today - finally a phone call from a chemotherapy nurse making an appointment for me to have my information chat about chemotherapy.  AND not only that, finally, a date to start treatment.  It is beginning to sound, even to me, that I am looking forward to this.  I am not but I feel I need to take the first step in the journey in order to be closer to the end of it. 


One piece of advice I have received from my nurse is that I should count the treatment down in cycles rather than weeks as there are only 6 cycles but they cover at least 18 weeks.  Seems reasonable! 


Other than that, the scar continues to heal, the puffiness is less everyday although I have to admit today it has felt a little swollen and the prosthetic has felt slightly less comfortable than yesterday.  I thought this was simply due to the me starting the massage therapy on the scar last night.  Seemed highly plausible that the scar would feel a bit different having had a good old rubbing yesterday.  The prosthesis (New Boob - NB) felt so heavy earlier that I ended up taking it out for ten minutes to give myself a rest. 


It was only when I came to put it back in that I discovered the reason for my discomfort. 


I had been wearing it upside down.