One interesting thing about having this illness is that it has provided me with the opportunity to conduct an (entirely unscientific and un-controlled) experiment in to the suggestion that certain illnesses and tablets "make you put on weight".
I have always been massively unconvinced of this but unable to say anything to contradict the suggestion as I have not been in that position.
Well I am pleased to confirm that I am now in that position as I have been taking huge doses of one of the major "my tablets made me put on weight" culprits, corticosteroids.
Yes, the steroids increased my appetite. Yes, I have been eating more. Yes, I have put on some weight.
BUT it hasn't been the tablets themselves that have made me put on weight! A tablet is a tablet. It does not as far as I am aware convert itself to pounds of excess weight as soon as you swallow it. It may increase your appetite and you may eat some extra food.
Lawyer speak now - where, ladies and gents, is the causal link? The situation is not "I take tablet, I gain weight". No. There is an intervening event here. The sequence is in fact "I take tablet, my appetite increases and THEN, I knowingly and voluntarily consume more than the recommended amount of daily calories for my size, I gain weight".
I'm not saying that eating is wrong, Christ, whatever makes one happy, life is short. But it has been nice to have my long held suspicions proved right about this common "I take tablet, I gain weight" myth.
Erm, I rest my case. Nobody ever uses that phrase in Court in real life, btw.
<climbs down from soapbox to go and fetch another biscuit>
Tuesday 24 September 2013
Tuesday 17 September 2013
New blood, please
Well yesterday's transfusion procedure was a marathon. Started off fine, my sister and I loaded up with a picnic from M&S and nonchalantly parked up at the hospital and strolled in to the chemo factory for my 11.30 appointment.
Now I don't like to be at the chemo factory very long as although the nurses are great, I don't like the place and I don't like the smell.
If things go well with a chemo session I can be in and out of there in less than two hours. For this process I knew realistically I would be there at least 5 hours.
As above, appointment time was 11.30. Helen and I sat there until 1.25pm literally just waiting, then I finally heard one of the nurses wondering aloud where my notes were. Most people might have been miffed at this point but I was just relieved to hear that I still appeared to exist in their eyes as I was starting to wonder.
Ten minutes later the notes are found and I am hooked up to my drip. Oh don't get excited, it wasn't the actual blood. No, the doctor hadn't even been invited to prescribe the blood yet! After realising this glaring omission ie that the blood wasn't there and wasn't jolly well going to be until someone wrote up a script for it, one of the junior nurses was dispatched to get that done.
She reappears with blood, hallelujah. They plumb it in and the four hour transfusion starts at approx 1.40pm, two hours later than scheduled. Clearly the transfusion goes the speed it goes and cannot be sped up so I am majorly discouraged by the fact that I have spent the preceding two hours sat on my arse with no blood dripping in to my veins and now have to spend a further four hours doing the same but with blood this time. Maybe I am being a grouch but I do find it difficult to accept that everyone else who was attended to and had their drugs etc set up before me had an earlier appointment time that day.
Honestly, I think they might have forgotten I was there. But what would have been the point in moaning at them about it, as that is not good karma for anyone.
The procedure was uneventful save for a slight temperature spike at the start which then went down again after some paracetamol. Also one of the male nurses accused Helen and I of "plotting" behind our curtain, lol. More accurately, I think we were doing what is known as "bitching"... But plotting sounds much better.
Finally got out of that place around 6pm last night - seven hours after arriving.
Expected to feel completely spiffing this morning but temporarily forgot that erm, I had chemo last Friday. Blood transfusions do not override normal chemo side effects it turns out! Silly me. However I am feeling less lightheaded this afternoon so fingers crossed the red stuff will do its job and see me through to the next chemo cycle.
Now I don't like to be at the chemo factory very long as although the nurses are great, I don't like the place and I don't like the smell.
If things go well with a chemo session I can be in and out of there in less than two hours. For this process I knew realistically I would be there at least 5 hours.
As above, appointment time was 11.30. Helen and I sat there until 1.25pm literally just waiting, then I finally heard one of the nurses wondering aloud where my notes were. Most people might have been miffed at this point but I was just relieved to hear that I still appeared to exist in their eyes as I was starting to wonder.
Ten minutes later the notes are found and I am hooked up to my drip. Oh don't get excited, it wasn't the actual blood. No, the doctor hadn't even been invited to prescribe the blood yet! After realising this glaring omission ie that the blood wasn't there and wasn't jolly well going to be until someone wrote up a script for it, one of the junior nurses was dispatched to get that done.
She reappears with blood, hallelujah. They plumb it in and the four hour transfusion starts at approx 1.40pm, two hours later than scheduled. Clearly the transfusion goes the speed it goes and cannot be sped up so I am majorly discouraged by the fact that I have spent the preceding two hours sat on my arse with no blood dripping in to my veins and now have to spend a further four hours doing the same but with blood this time. Maybe I am being a grouch but I do find it difficult to accept that everyone else who was attended to and had their drugs etc set up before me had an earlier appointment time that day.
Honestly, I think they might have forgotten I was there. But what would have been the point in moaning at them about it, as that is not good karma for anyone.
The procedure was uneventful save for a slight temperature spike at the start which then went down again after some paracetamol. Also one of the male nurses accused Helen and I of "plotting" behind our curtain, lol. More accurately, I think we were doing what is known as "bitching"... But plotting sounds much better.
Finally got out of that place around 6pm last night - seven hours after arriving.
Expected to feel completely spiffing this morning but temporarily forgot that erm, I had chemo last Friday. Blood transfusions do not override normal chemo side effects it turns out! Silly me. However I am feeling less lightheaded this afternoon so fingers crossed the red stuff will do its job and see me through to the next chemo cycle.
Saturday 14 September 2013
Twilight and Transfusions
Went to my fifth chemo today. First odd thing to happen was being called in by the nurse straightaway. Usually there is at least a half an hour wait. I assumed this was while my drugs were prepared.
So upon being called straight in I assumed there must be a problem. However, we get in to the room and the nurse starts unwrapping things as usual.
I ask him if all was good to go with my bloods. "Oh yes" he says, carrying on busily unwrapping. I can still sense a massive "But...".
Sure enough he then casually says "BUT your haemoglobin is getting lower so I've booked you in for a blood transfusion on Monday". Boom, just like that!
Turns out my hb levels have now decreased from an acceptable 10 to around 8.9. That level is ok for chemo but they don't want it to decrease even more and affect my final treatment session currently scheduled for October 4th. Fair enough I suppose. I ascertain that the blood can go in through my port - good thing. I further ascertain that the transfusion will take 4 HOURS!!!! WTF??! I am having two bags of blood. Will it even all fit? Apparently I will feel " like an 18 year old" afterwards. So we shall see.
Other than that I am staying at my lovely friend's house tonight and I have introduced her to the Twilight saga. Worried at first that it might be a massive fail but she loves it and wants to know why I didn't bring the second one to watch in the morning. Result!
So upon being called straight in I assumed there must be a problem. However, we get in to the room and the nurse starts unwrapping things as usual.
I ask him if all was good to go with my bloods. "Oh yes" he says, carrying on busily unwrapping. I can still sense a massive "But...".
Sure enough he then casually says "BUT your haemoglobin is getting lower so I've booked you in for a blood transfusion on Monday". Boom, just like that!
Turns out my hb levels have now decreased from an acceptable 10 to around 8.9. That level is ok for chemo but they don't want it to decrease even more and affect my final treatment session currently scheduled for October 4th. Fair enough I suppose. I ascertain that the blood can go in through my port - good thing. I further ascertain that the transfusion will take 4 HOURS!!!! WTF??! I am having two bags of blood. Will it even all fit? Apparently I will feel " like an 18 year old" afterwards. So we shall see.
Other than that I am staying at my lovely friend's house tonight and I have introduced her to the Twilight saga. Worried at first that it might be a massive fail but she loves it and wants to know why I didn't bring the second one to watch in the morning. Result!
Thursday 12 September 2013
Rejected
Well, it finally happened. Despite my best efforts to appear interesting, when head honcho Oncologist returned and saw me last Friday he was clearly so bored of me that he said since I seemed to have coped ok with the first Docetaxel I probably would with the others so he does not want to see me every three weeks anymore. I feel mortified and rejected.
However as it turns out, seems he still wishes to retain a foothold in my life as he subsequently sent me a letter giving me an appointment for November. Hmmm, mind games, eh?
I also totally accidentally hit on a fabulous reverse psychology tactic. Now I am telling you this in confidence and don't just use it willy nilly on every Consultant you may meet. It may turn out to be overkill, or inappropriate to the situation and it won't always work. It is like the bazooka of tactics.
What happened was, he casually asked me whether we had talked about removal of ovaries. I said no we hadn't but that I did want it done. Along with removal of womb and anything else remotely connected with the devil tumour driver, oestrogen. I then very politely said "but of course I'm not sure if I fit the criteria for that". Well. He scoffed at the mere mention of criteria and came over all powerful and impressive and "if I say it shall be done, then it shall be done". So fingers crossed the bank of daddy won't have to end up funding that after all.
We're waiting for the results of my genetic testing first before we talk more about that.
So what else has been occurring apart from my doctor sacking me?
Went for pre chemo blood test yesterday. Noticed today that the nurse has the honour of being the first one ever to bruise the skin over my port. No idea how that happened. Thought that only occurred when looking for a vein.
Fifth chemo tomorrow. On a steroid hyper today after taking the 16mg dexamethasone pre-drug (like pre-drinks but not nearly as fun).
Have also had A COUGH. With all the drama about possible neutropenic sepsis - where you get an infection whilst white blood cells are low - I had kind of forgotten that not every single viral illness will require hospital admission. Have been checking my temperature and keeping an eye on things and we will see whether it goes away on its own.
Finally, I am being referred back to my breast surgeon who wants to hack away at my armpit next. Oncologist said this surgery could not take place until late October once my white blood cells replenish after final chemo. I am now very worried that my surgeon might just book me in before I have had a chance to tell him it needs to be after my birthday drinks on 2nd November. I'm sure he will see me to get a Consent Form signed (at least, I don't remember signing one for this yet!!) and I can sound him out about a date then. Now before you write me off as the sort of pleb who thinks the NHS schedule revolves around them, I'm not. I don't plan many important things in advance so I am hoping that if I do end up having to mention this to him, he takes it the right way and schedules my armpit in accordingly...
However as it turns out, seems he still wishes to retain a foothold in my life as he subsequently sent me a letter giving me an appointment for November. Hmmm, mind games, eh?
I also totally accidentally hit on a fabulous reverse psychology tactic. Now I am telling you this in confidence and don't just use it willy nilly on every Consultant you may meet. It may turn out to be overkill, or inappropriate to the situation and it won't always work. It is like the bazooka of tactics.
What happened was, he casually asked me whether we had talked about removal of ovaries. I said no we hadn't but that I did want it done. Along with removal of womb and anything else remotely connected with the devil tumour driver, oestrogen. I then very politely said "but of course I'm not sure if I fit the criteria for that". Well. He scoffed at the mere mention of criteria and came over all powerful and impressive and "if I say it shall be done, then it shall be done". So fingers crossed the bank of daddy won't have to end up funding that after all.
We're waiting for the results of my genetic testing first before we talk more about that.
So what else has been occurring apart from my doctor sacking me?
Went for pre chemo blood test yesterday. Noticed today that the nurse has the honour of being the first one ever to bruise the skin over my port. No idea how that happened. Thought that only occurred when looking for a vein.
Fifth chemo tomorrow. On a steroid hyper today after taking the 16mg dexamethasone pre-drug (like pre-drinks but not nearly as fun).
Have also had A COUGH. With all the drama about possible neutropenic sepsis - where you get an infection whilst white blood cells are low - I had kind of forgotten that not every single viral illness will require hospital admission. Have been checking my temperature and keeping an eye on things and we will see whether it goes away on its own.
Finally, I am being referred back to my breast surgeon who wants to hack away at my armpit next. Oncologist said this surgery could not take place until late October once my white blood cells replenish after final chemo. I am now very worried that my surgeon might just book me in before I have had a chance to tell him it needs to be after my birthday drinks on 2nd November. I'm sure he will see me to get a Consent Form signed (at least, I don't remember signing one for this yet!!) and I can sound him out about a date then. Now before you write me off as the sort of pleb who thinks the NHS schedule revolves around them, I'm not. I don't plan many important things in advance so I am hoping that if I do end up having to mention this to him, he takes it the right way and schedules my armpit in accordingly...
Sunday 1 September 2013
Swingball and socialising
Well, it definitely wasn't a placebo. Up until Wednesday I was still waiting for the worst of it to hit. I told a friend on Wednesday morning that although this drug had not produced the hellish nausea and fuzzy head of FEC, I had my suspicions that it was working under the surface on a further "darker" set of side effects.
I was right. By Wednesday tea time I had the most horrendous heartburn ever. My chest felt so odd that I seriously started to wonder whether I was in fact getting some sort of dreaded infection instead.
Then the predicted joint aches kicked in. Bit like someone insistently and frequently prodding you from inside your various limbs. Paracetamol sorted that to an extent and thankfully also dulled the heartburn although clearly one cannot simply continue taking painkillers for indigestion!
My temperature was not rising and I didn't feel feverish so I hoped it was just side effects rather than illness. Rang the ward first thing on Thursday for advice and they were great, said it sounded like indigestion to them too and suggested I ring my GP who could prescribe something.
I didn't ring that day as I wasn't sure whether I would have to go to the surgery and I didn't fancy doing that with two kids in tow. The joint aches continued and I felt justified in sampling my Co-Codamol that evening. Effective stuff.
The heartburn started to improve but I still rang the GP on Friday who was fab and prescribed (new and complicated name coming up) Omeprazole. I didn't even have to go in and see him, brilliant service. He told me that I was never going to get anywhere taking the likes of Gaviscon for this and the drug he has prescribed is an actual acid suppressant so it stops or reduces the production of acid rather than trying to deal with it once is is already there and causing a problem.
Mentioned to my mother in law about this and she said I must get some peppermints in. Yeah, and a bloody voodoo doll to go with it, that will be equally effective. She doesn't believe in pill popping. The Daily Mail says it will kill you, apparently. Not sure of her stance on chemotherapy... #door #horse #bolted #dailyfail
I felt ok on Saturday and went to a lovely BBQ party for my sister's birthday. Was still tired out this morning after all the socialising. A dear longstanding chum whose friendship goes back to our playschool days together was down visiting and popped round for a cuppa and a nice catch up this morning. Then me, Dan and the kids had a chilled afternoon in the garden.
I finally persuaded Dan to erect the Swingball (ooerrrr missus) on his precious lawn and showed him a snapshot of my formidable skills in that department.
Also started showing Abbie how to do it and she was really quite good at hitting it once Daddy stopped insisting she hold the bat in her right hand when she is clearly a leftie. Had many hours of Swingball practice as a young girl wearing out my dad's lawn at home before finally being banished to play it in the field at the bottom of our drive instead. And yes, I played it for ages on my own, I was an oddball loner.
It's actually a brilliant stress reliever. Think I may well take it up again now. Or just use the bat to fly swat anyone who annoys me, instead...?
I was right. By Wednesday tea time I had the most horrendous heartburn ever. My chest felt so odd that I seriously started to wonder whether I was in fact getting some sort of dreaded infection instead.
Then the predicted joint aches kicked in. Bit like someone insistently and frequently prodding you from inside your various limbs. Paracetamol sorted that to an extent and thankfully also dulled the heartburn although clearly one cannot simply continue taking painkillers for indigestion!
My temperature was not rising and I didn't feel feverish so I hoped it was just side effects rather than illness. Rang the ward first thing on Thursday for advice and they were great, said it sounded like indigestion to them too and suggested I ring my GP who could prescribe something.
I didn't ring that day as I wasn't sure whether I would have to go to the surgery and I didn't fancy doing that with two kids in tow. The joint aches continued and I felt justified in sampling my Co-Codamol that evening. Effective stuff.
The heartburn started to improve but I still rang the GP on Friday who was fab and prescribed (new and complicated name coming up) Omeprazole. I didn't even have to go in and see him, brilliant service. He told me that I was never going to get anywhere taking the likes of Gaviscon for this and the drug he has prescribed is an actual acid suppressant so it stops or reduces the production of acid rather than trying to deal with it once is is already there and causing a problem.
Mentioned to my mother in law about this and she said I must get some peppermints in. Yeah, and a bloody voodoo doll to go with it, that will be equally effective. She doesn't believe in pill popping. The Daily Mail says it will kill you, apparently. Not sure of her stance on chemotherapy... #door #horse #bolted #dailyfail
I felt ok on Saturday and went to a lovely BBQ party for my sister's birthday. Was still tired out this morning after all the socialising. A dear longstanding chum whose friendship goes back to our playschool days together was down visiting and popped round for a cuppa and a nice catch up this morning. Then me, Dan and the kids had a chilled afternoon in the garden.
I finally persuaded Dan to erect the Swingball (ooerrrr missus) on his precious lawn and showed him a snapshot of my formidable skills in that department.
Also started showing Abbie how to do it and she was really quite good at hitting it once Daddy stopped insisting she hold the bat in her right hand when she is clearly a leftie. Had many hours of Swingball practice as a young girl wearing out my dad's lawn at home before finally being banished to play it in the field at the bottom of our drive instead. And yes, I played it for ages on my own, I was an oddball loner.
It's actually a brilliant stress reliever. Think I may well take it up again now. Or just use the bat to fly swat anyone who annoys me, instead...?
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