After effects or Normality?

Its two weeks since the poison entered my body and I still feel as if I am suffering from the side effects, but not sickness or ulcer etc, although I have a pair of lips covered in cold sores.  My shoulders ache, my neck aches, my chest is heavy and hurts, my boobs - well I just don't want to go there. 

 

I am still tired, although I have been a little busy this week, popping into work, having a couple of meetings etc and going to healing.  A little bit of a cold is lingering in the background too.

 

I can't remember whether its normal to still feel this way, I hope it passes once the chemo stops because the thoughts of living with this additional painload isn't an exciting prospect.

 

I am on the edge of deciding to go back private for my chemotherapy, my works insurance covers me for this, but then I wanted to have an MDT team and going back to a private oncologist will lose this, although I'm not sure whether I have a team or not.  If I go private I can have the chemo at home, back up isn't there if something goes wrong as I would still need to go to hospital, but at the same time I have a nurse on the end of a telephone at all times. 

 

It is a tough decision, brought on only because of the cannula and the dreary room we have at Bishop Auckland.  I left a message with my NHS oncologists secretary to ask if I could receive the chemo privately but still see my NHS oncologist to ensure things were ok, she told me he is fighting to keep the NHS and doubts he would help.  I can understand this, I don't want to lose the NHS for anyone, in fact I think a lot more money should go in to it, but at the same time they should lose a lot of middle managers and top ones, bring back ERN's and have Auxiliaries do the duties they did before.  So much waste and the patient and working staff always lose out.

 

As we drove back from hubbys appointment last night it dawned on me that we had to fight for this 3rd line of chemo, he said radiotherapy would probably be out of the question due to cost etc and that trials would be the only thing open to me.  Well if I go down a trial route I don't see him as an oncologist, if this doesn't work he isn't going to offer anything else so why do I need him?  Questions that I have no idea who to get answers from.

 

My chemo is next week, so if I am to do something it will need to be arranged Monday or Tuesday, I don't want my chemo day changing as it hits well if I ulcerate, unless, of course, it is a Friday which gives me a guarantee that I won't be bad on a Saturday or Sunday.

 

Whichever route I go I know I will question it, but then not many oncologists really do want a mesothelioma patient on their books, we cost quite a bit and we can't guarantee we will stick around for a long time.

 

 

Cycle 3 - No 1 after 5 year break

Started the steroids yesterday and already made a big mistake.  I took the first one at 9 am and then somewhere between 6 and 7pm last night.  Went to bed at 10.45 and felt ok, a little warm, which is unusual for me as I am always cold these days.

 

I woke up at 1.15, the end of the bed where I was snuggled too was soaking as was my full body, I got up and dried off, back to bed then it was around 2.45 and it happened again, I got up towelled down and moved further into the bed to the dry sheet area.  At 5.15 I was soaked, my heart didn't feel right and I had to wake Gary.  He went and got the thermometer, my temp was 35.3, a meso attack, adrenalin was starting to pump through and I couldn't settle.  Temapazam to help knock me back out and slow me down.  I was back into the I don't think I can do this, its those times at night when you feel bad and there isn't anyone who can answer the questions, yet you know the answers already but it doesn't help.

 

Anyway I was ok and went into work this morning for a couple of hours.  We got to the hospital 15 minutes before I was due and we waited an extra 15 minutes over our time before I was called.  The place is dreary, worse than James Cook.  Two main rooms where you sit the entire time of infusion, seats face each other with about 3 foot of floor space between, 6 chairs each side.  I went in and asked if Gary could come too, they said he could only stay with me while I had the needle.  They changed their mind a little later and took us to a side room.  Then I got in to trouble, I had elma cream on both hands numbing my veins.  This is not allowed here, there nurses will not put chemo into numb veins in case they don't have them insitu and damage the tissue.  In the previous infusions (11) I used it on 10 so I can't understand their problem, if the needle wasn't in right the first flush would show the problem.

So I felt my eyes well with tears, I couldn't face the cannula without the cream or they would need to sedate me, she said she couldn't sedate me because I wasn't written up for it!  I just wanted her to stick the bloody needle in.  I said I couldn't do it, she was more interested in who told me I could use it so she could report them for giving out wrong information.  What about me, the patient, who was becoming stressed!  I went for a walk around the corridors so I could try and get myself cooled down.  I went back, she soaked my arms in hot water then got the cannula in, must admit it didn't hurt as bad as I expected.  I have had some terrible experiences over the years and I mean terrible, considering what is to come this bit should be a walk in the park.

Thankfully we took ice in with us, unfortunately the thermoflask wasn't leak proof and soaked everything in my bag!  No ice or water brought, even though that was written up on the notes, what would happen if Gary wasn't with me?  Two nurses on today only, yet the Monday when no chemo they had 4 nurses on duty and two record nurses, unbelievable.  Also my specially made drink for my exploding stomach wasn't there, nor was it written up to be here.  Things can't get any worse can they.  I am honestly thinking of doing that Cancer at Home again, at least you can speak to your oncologist or a nurse pretty much easier than the NHS.  But then I will lose having an NHS oncologist after the event.  There is no easy decision when you are battling cancer unless its breast or bowel.  There was also another lady in the chemo room, she was on alimta and carbo I asked her if she had meso she said she had a lung cancer but didn't know the name.  It can only be meso I wonder if she has been fobbed off.  She was around 76 maybe 77, had an operation 2 years ago but the cancer has come back, I couldn't ask anymore as we were moved then.

 

On our way home we stopped off at the chemist as my back was already itchy, together with a little disturbance in my lady bits and I am peeing for the whole of England.  Plus that itchy bum...

 

Gary read the dairy from when I was last on chemo in 07, he told me he wished he hadn't because he had forgotten the amount of side effects I went through then and he felt helpless then, he doesn't want to feel that way again.  I told him that as long as he is by my side he is not helpless and I have already apologised up front for anything that may happen and thanked him for being by my side.  It isn't easy for our partners, we may go through it but they have to endure it.

On a better note, Steve has done better on his second dose, I hope that continues.  I still can't understand how some can walk through chemo without any problems while others can be so ill and others have nausea and tiredness throughout.  It is a strange thing to poison our own bodies but after last night I truly believe I have started on the right day, my meso maybe starting a growing spurt so maybe the chemo may just kill it in its growth pattern.

 

To everyone else who is currently having chemo, good luck, to those coming through surgery I hope the pain isn't unbearable and those who are stable please please stay that way.

 

I will probably be updating this regularly, keeping you informed of how chemo affects me, this is after all my own record of this terrible journey that none of us should have to endue.

 

On a political front, we have to fight for our future generations, more will be diagnosed with this cancer and a lot more will be younger.  My brother told me today that my old school was built with asbestos and that was a new school opened in 1970 and my infant junior school was full of asbestos, they are all still standing today.

Chemotherapy Starting again

Being back in a chemo lounge brings back those awful memories.  My Onco was great the moment I entered he said right we are going ahead then, I guess the decision is made.  We are starting at a very low dose of 50% of the recommended calculation for my body weight.  If my stomach holds then the next one will be higher, each one raising over the total of 4.  I don't know why only 4 but that is the only course this onco usually does.

 

Back in 04 chemotherapy wasn't on offer for mesothelioma, I remember in the October my chest specialist sending me to see an oncologist at James Cook in the hope that she could do something.  She told me there was nothing but if I could hold, on a drug that was being tested may just be released before the mesothelioma killed me.  As it turned out I was lucky and was offered a dose of Alimta on trial, at the end of December 04.  How many before me had been given nothing, its hard to contemplate that only 8 years ago that alimta wasn't even available.

 

So I had my B12 injection, I must admit it didn't really hurt as I had it in my bum, and start folic acid tomorrow, the diaries will come out of the cupboard so we can compare what happened and when, and hope the same doesn't this time round.

 

It seems that there are only a small handful of mesothelioma patients in my area, I find that hard to believe considering this was such an industrial area along with ship building just up the road.  As the lung nurse said today "we don't see enough of mesothelioma here to be able to understand it", I said this is where the patient leads the staff then.  I don't think it went down that well!

 

I was also told I can't use my elma cream on my veins, this is a first for me as every time before I have, my fear of the needles makes the whole experience much worse.  Before I would start having sweats just thinking about the needle 3 days beforehand, how will I cope this time.

 

Yes I know I sound like a coward, how could I get this far with meso and still be terrified of needles but the thought of the cannula going into my veins makes me feel physically sick.

 

Then the worry is what if it doesn't slow the meso down?  For some reason the meso has accelerated its growth pattern, yet I look much healthier at the moment than I have looked for some years... it doesn't make sense.  Look well - full of meso, look ill - meso grows slow!  My body certainly doesn't do what its supposed to do thats for sure.

 

So I start chemo on the 1st of November and Gloria, a friend in the states, goes in for surgery.  I hope for both our sakes all goes well.

 

I am pleased that Steve has picked up and hopefully his next chemo won't be so hard on him, having a chest infection certainly didn't help him on his first cycle.

 

I know that Gary will be ensuring the house is disinfected and I will be banned from going anywhere if there is a risk of germs.  Everyone at work is already suffering with one bug or another, this next week will be fun trying to dodge them but I need to get work sorted out before starting. 

 

To everyone on or starting I hope it goes well, to those in remission please stay there - I just wish I had a magic pill to take all our troubles away.