Cycle 3 Dose 2: Suffering

I had hoped things would have improved once the chemo was done, but heyho my name is Jan and nothing goes my way.  The chemo has done its damage to my stomach, thick orange and yellow liquid like the consistency of beaten eggs yolks came up, the pain something worse than anything I have known.  Nothing would stop the pain, I suffered all night and then finally I managed to throw up this stuff, it eased for a while until it started again.  I waited until Monday to phone the hospital, otherwise it would have been sitting in a bed in agony with them unable to do anything.  May as well spend 2 nights in ones own bed feeling ill than in a hospital one.   The damage is now done if I throw up I am now bringing up blood.

 

On Monday I also received an email back regarding my email for more space for the chemo lounge, it made it sound that I had a go at the nurses and of course they were going to be defencive.  So I wasn't surprised when I rang at 10 than it was 3 hours later when I got a call back and then it was from Bishop.  Thank God for Yvonne, she was understanding, I told her everything I have taken, and to be fair she said there really isn't anything more they could give.

 

Having been unable to get comfortable all weekend by yesterday afternoon I started to feel some relief and insisted hubby got out of the house and took the dogs with him.  He needed a break from me, his adrenalin has been pushing through his system since Thursday and it isn't good for him to be stuck with me all the time.  I was pleased when he did go out, he needs fresh air rather than being cooked up with me.

 

Thankfully we live on a hill, you wouldn't think it but its a steady climb to our little village, the road of course is badly flooded as farm fields lead onto it.  Our fields where the dogs run around are flooded which the dogs loved.

This is normally just a field, no lake in the middle

The small pond in the back of the wood is actually now a large pond which has formed a river running right through the trees.  Having been awake most of the last 3 nights I have listened to the storm and as usual thoughts aren't good in those black hours.

 

We have lost a number of mesothelioma friends over the last week and it is becoming too depressing, I know that I will never be able to have carboplatin again and I also feel that Alimta is out of the question too.  Bearing in mind I dropped Carbo in 07 and the Alimta still destroyed my internal organs. 

 

I fully understand that logic now of life is important.  Maybe I could risk another dose but at what cost, I have suffered from rotten insides for all these years, to the point of I was finally getting it a little better only to knock it back again.  Will my insides recover I don't know but I don't want to spend each morning back in this pain again. 

 

I have to hope and pray that the meso has taken a hammering and what growth is there has been knocked back giving me at least a couple of years.  After chatting yesterday I think I will also knock the scans on the head for a while too, whats the point I know my insides, why confirm the growth it only brings about the need to want to kill it but as I haven't got many options, sorry no options left, maybe its better not knowing.

 

I hope and pray that something will be found to stop the dividing of these unnatural cells soon and this will then put an end to the many deaths we have through mesothelioma.  Also I hope its in time to save me.  I am still quite young, a mere 52 and not ready to die.

 

On that note I guess I should try and get a shower, moving around hopefully gets the stuff moving through my gut.

Reaction to Chemo Infusion

You just know things aren't going to go well, its an instinct inside your guts that pushes right through your body.  After taking the steroids on Wednesday, another bad night of sweats and not sleeping, Thursday was chemo day.  My temp wouldn't get over 35.7 but the chemo went ahead, even the nurse double checked it, and I told her it would be right, as it had hardly risen from that point for the last 3 weeks.

 

Having had difficulty getting the needle in, first the right arm with ten minutes of fiddling the thing to try and penetrate the vein we moved to the left arm.  Agony in both from needles!  The fluid started to drip.  I was itchy throughout after the steroids went in, my back the worst.  Then the carbo was started, I couldn't explain but I didn't feel well at all, then suddenly this awful feeling just below my heart and my lips were burning, my face was beetroot, my arms swelled, my stomach swelled and the pain got worse.  Gary called the sister and before we knew it 3 nurses and 5 doctors were in the room.  It was terrifying to say the least, my arms were increasing in size in front of my very eyes, I wanted to rip my bra off as I felt I was constricted, but there were people around.  Oxygen mask was the first thing put on, bp was high, heart rate extremely high and oxy very low.  Not a nice experience.  My only thoughts were thank god I didn't push and have this at home, I would surely be dead by now.

 

We don't think of the chemo going in as a problem, only once it is in.  I have learnt a valuable lesson, this stuff is extremely dangerous.  My concern now is what of the future.  Will they try with just Alimta or is this the end of my chemotherapy, and if so ... then what?

 

My insides today don't feel good, that stomach may not hold this time around, it came close last time.  Today, and its only Day two, it feels irritated and getting a little angry when fluid goes down. 

 

I didn't have any bone aches during the night of Thursday and can only hope that what happened on dose one has done the trick.  I am afraid now especially if that is the end of the chemo, although in a dream last night I heard someone tell me I needed to go on a trial. 

 

I was also naughty yesterday and dropped the steroids, just in case they had helped push the chemo into the allergic reaction. 

 

It's getting through the next week that is important now, we all know how that goes, I am so angry at having this cancer, I am still only young, to young in my books to die from this.  52 is no age in today's world, I have to have faith that the drugs I have had will work and hopefully keep the meso at bay for a while longer. 

 

The other worry of course is the build up of pain, the bigger the meso the worse the pain, I don't think my body could honestly take any more than it already deals with. 

 

I want good news, so many warriors have died over the last few weeks, it makes me feel guilty for still being here after all these years but terrified that my number is coming.  What a way to live, it isn't fair that we have been dealt this card, a card that isn't even our fault.

Weekend Gone

Its been an interesting week where blogs and postings have been made.  Linda wrote a good one about the new support group that has been set up, sounds very interesting and hopefully it will carry on to be the same.  Amanda has written more on new trials, Mavis has been doing a few talks with Doctors and Specialists and Debbie is in the waiting for Scan mode.  On Face Book someone wrote they had been cured from Mesothelioma, sorry and all but I don't believe there is a cure and no one should post such an outrageous statement, it also coincided with the release of a book she has published, which left me feeling a tad suspicious of her reasons.

 

On the home front I have had a week of up and down, feeling healthy one minute and totally wrecked and in pain the next.  The flash headaches and concentration being one of the worst to deal with but those terrible mornings have returned.  Not only with my stomach feeling much worse but everywhere where my cancer resides has hurt too.  Hubby's suggestion take morphine, I on the other hand am trying to keep my kidney from having to work overtime and won't touch it.  Take yesterday, I felt dreadful when I got up, pulled round with coffee and computer then went into work for an hour.  I came home feeling the same but instead of sitting down and relaxing I baked.  I can't let this mesothelioma or treatment take control of my life again.

 

Today the air was still, no mist but a good ground frost so after I took 2 hours to pull round and get my aching bones moving we took the dogs over the woods.  Any form of exertion makes my nose run, I wonder if this happens to anyone else?  It even happens when I'm baking, having forever to keep blowing my nose!

 

Bear didn't find any pheasants to chase but the scenery around the woods today was beautiful, the rich greens of the grass, the browns and reds of the trees.  We have set up a few bird feeding places among some of the trees, seems a squirrel had a hard time trying to get into the nuts and pulled the feeder off the tree, unfortunately the top stayed insitu so he gave up, leaving his scratch marks all over the lid.

Bear gives me the hump if I haven't been on a walk with him so no doubt after today I will be back in the good books, fingers crossed. 

 

I have made an appointment with my GP for in the morning, I hopefully can discuss my thoughts and anxieties about the chemo lounge and the fact that I can't lie about using elma cream.  If I am to go private I need to get this set up in 3 days as I don't want to delay the chemo for a week, not while I am still in pain and believe the poison is truly doing its job and killing all those nasty meso cells as they divide trying to make more nasty meso.  If I was right and when I had the last one my body was starting a session of growth then I hit it where it hurt, unless, and I really shouldn't air this, it has the opposite effect and the meso gained strength from the chemo.  It is hard, my oncologist is fighting to save the NHS and on Monday afternoon I will be seeing him about the next dose, I will also raise my concerns with him too. 

 

I do want to bring about change, change to the lounges we have, after all Bishop has plenty of spare room, it keeps closing wards or moving them around.  The other problem is if I do complain will it make things worse, as I believe when you say something negative about a hospital or staff they all turn against you.

 

If I do go private again and require more treatment further down the line I doubt I will have to fight for it like I did for this 3rd line of chemotherapy.  Decisions, why can't our lives be made easier when we have this to deal with instead of being made so difficult.

 

Our Lexi has been naughty again and peed in the lounge last night, not that we knew until Gary stepped onto it.  Bear came upstairs at 7 to get me up because Lexi was crying to go out, as soon as I opened the front door she was out on the garden so I never gave it a thought she would have done anything in the house either.  No I didn't stay up I climbed back upstairs and went back to bed, although I had to take a puff of ventolene because the cold air and the stairs had knocked the air out of me.  Yesterday Bear got hubby up at 6 because Lexi wanted to go out then.  I hope this isn't a sign of things to come with Lexi, after all she has been on those tablets a long time and they can cause problems to her organs. 

 

I wish Chris good luck, he was told several months ago he only had 3 months to live and to put his things in order.  I told him to go and see J Steele, surely there could be something, so tomorrow he starts on IPM or IMP, memory isn't working.  The only problem is he has to travel to London, stay for 2 nights, one the night before and one the day of chemo, then come home to travel again in 2 weeks for another drug, then back again the week later to have the first two again.  Its a lot of travelling when you are on treatment and feeling ill, I hope the treatment works for him and he doesn't suffer to badly.  This is what I mean about trials or other combinations, why we can't have satellite hospitals that will administer the drugs on behalf of the main trial centre or a different oncologist is beyond me.  They want people on trials but getting to them isn't that easy, especially if you are ill.  Mavis and Tess went through this when on a trial earlier this year.

 

It's Denise's funeral on Friday at Yeovil Crem if anyone would like to attend, although no wearing black, its a celebration of her life.  My thoughts will be with the family, unfortunately I will be into Day one of Chemo.

 

I guess that's it for today, I truly hope many of you are staying in that Stable bracket and for those who are on treatment along with me, lets hope we tolerate it a little better this next time round, I know Steve is in tomorrow for no 3 so my fingers will be crossed for him.

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.

 

 

Changes!

I have no idea what I did but I lost my layout for my blog!  I can't retrieve the colours that I had or the background.  Warning to all - never go into something that isn't broken!

Sorry if these colours don't do anything for you, not sure what to do now, my blog has always been a pinkish colour and to go totally different would throw those who have become use to it.

Please let me know what you think of it, if its unbearable to see these colours and it puts you off reading it I would love to know.  In the meantime I will try messing around with it until I can fix it.

Staying Alive

This week has brought many thoughts flicking through my mushed up brain.  The most important is the fight to stay alive as long as possible.  Reading that both Denise and Jo have died from mesothelioma this week hit me like a double decker bus out of control, especially more so with Denise. 

 

I spoke to a fellow mesothelioma suffer, Chris, who was diagnosed with me back in 04.  I sent him to J Steele because again he was told there was nothing out there for him.  He has had Alimta and Carbo 3 full cycles now over 8 years.  His meso is hanging from his aorta, a 6 inch mass, which reminds me of the set of curtains I had hanging from my lung back in 04.  After my cryo in 08 I tried to get Chris to write to Dr Abtin but his oncologist said it wouldn't help and that was that.  I am hoping that if Chris gets shrinkage again he will reconsider this as an option.  After all Dr Abtin was 1mm away from my aorta back then too.  Dr Steele has recommended the IPM course of chemo and I pray this will work for him.  He may be 70 now but he certainly doesn't feel it - again why should he be given up on?

 

Amanda too has done some amazing research and posted it on her blog, they keep telling people this is rare, it isn't as rare as one would think.  Together with Linda (Doing something Positive) they have both raised valid points.  It may be rare to community hospitals but Mesothelioma is a rapid growing cancer with more deaths per year than road accidents.  Yet we hear road accidents can be prevented, what about deaths from this cancer - surely they too can be prevented!

 

I feel so alive today, vibrant and energised, I don't know whether my body is going through some mammoth change and kicking the meso out (that would be a big answer to my prays) or I have been instilled with how important life actually is.  I journey from one day to the next and never think the next will not be there, this week has proved that, more so with the rapid decline of Denise.

 

I was also contacted from a company that deals with removal of asbestos, they wanted to use one of my blog pieces in their newsletter to show to employees why there work it is so important.  I am pleased that I was able to help.

 

There is nothing out there that prepares us for when our oncologists say to us "Sorry I don't know what else to try, just enjoy your time left".  To date I have had this in 04, 08 and 12, seems every four years - I hope by the time 2016 comes around there are more options out there.  Chemotherapy isn't pleasant, in fact I think its the worst thing in life to go through, but if it keeps me alive then I should have the right to keep taking it.  I don't understand why we are so far behind the USA.  I know we are following them in this terrible Claim for everything but there doctors are still willing to give things ago.  They don't see Mesothelioma as a death sentence, they see it as a challenge, why can't we?

 

Well that's my thoughts for today, neither enlightening, heartbreaking or moaning, just ramblings from someone with chemo brain.

 

Good luck to all the meso warriors - yes that means you - everyone with this cancer is a warrior and lets hope change is around the corner.

The Loss of a Friend - Denise

Many who have mesothelioma don't know anyone and like to keep it that way, in my early days I tried every forum to find someone else with this cancer but for years no one came back.  Then slowly I started making friends and have kept in touch through the good and bad times of this terrible cancer.

 

On Friday at 2.00 pm a friend from my blog and then facebook died.  I can't believe it was only in April this year she was diagnosed, the growth was small and within 2 weeks of being diagnosed she started chemotherapy. 

 

Denise was frightened, I know we all are, but she was sure she would die.  We all tried to reassure her that this would be a long way off, how wrong we all were.  I got to know Denise quite well over the months, speaking quite often on the phone, her sense of humour was a strong point and she did make me laugh but she could not shake this fear of dying.

 

The standard regime of chemotherapy didn't do anything to halt the growth and like many before her, she went to Barts.  A new regime would be used, unfortunately Denise took ill before she could try anything further.  No one will ever know why it happened so fast. I am pleased to say that over the last few months she did so much, visiting places with her family, indeed you could never find her at home during the day, she was always out and about.

I was lucky to meet Denise and her partner at the Conference in October, I am still shocked that four weeks later she has died.  The one blessing is that she didn't suffer, pain had stayed away for most of the time, but that is no consolation to her family.

We just never know, we think we have become accustomed to this cancer and we expect everyone to live a lot longer than a mere 7 months, this has been a big wake up call to the mesothelioma community as a whole and to me personally.  Another tragedy that should never have happened.

 

I hope that her family can find solace in the fact that she didn't suffer but to lose a parent who was young and vibrant is a cross to heavy to bear.

Rest In Peace Denise.

Interlude - we are at war!

As I am slowly destroying my good cells and hopefully killing  the nasty meso ones it brings us to the time of recollection.  I am putting myself through the infliction of poison that I know will bring my body to its knees, if I was a serial killer doing this to others I would be locked up and labelled a grotesque killer, one who pours pain and suffering on those affected.  Yet I am an innocent in all of this, as are all those who have gone before me and those, unfortunately, who are to come.  Do I want justice, you bet. 

 

What enjoyment has asbestos brought into my life?  If it was from smoking, then justifiably I am to blame, even though when I started, smoking was something you did to be an adult (stupid but true in my youth) and people weren't warned of its dangers.  Its like over eating, being obese, self harmed by today's adverts to eat fast food and caution to the wind on what it does.  But asbestos, what did it do for me - apart from give me this painful death sentence.

 

I have just had a conversation with hubby, he doesn't think that fighting will ever get us anywhere, kind of it isn't our battle, but it is.  If it wasn't for people like Chris Knighton or June Hanncock this cancer would still be hidden away and classed as a rarity among those under 75.  We need to join together, we can't teach doctors about medicine but we can help them understand a disease that rips at the very heart of yours and your family's life.  In fact, as I wrote many times before, this was an old man's disease and in the eyes of the politicians and NHS was it really worth spending money on, the people targeted were no longer paying into the system and would probably only have a few years left anyway.  But these people had paid into the system, many probably fought the war to keep us Great Britain, yet they were cast aside by money and greed.  It is still happening today, research into mesothelioma is still the lowest, where does all those millions go raised by Cancer Research, surely there are enough breast chemotherapies out there, bowel cancer has a good success rate (if the doctor is on the ball and diagnosis correctly).  Many are caught soon, yet meso, well it sits and sits and then suddenly you are terminal with what they say 'little chance of survival'.  Had I listened in 04 I doubt I would be here, there were 4 of us diagnosed around the same time at James Cook.  Two of us are still living, both are now battling again for our lives.  So in averages that's 50% survived 8 years since diagnosis, that kinds of throws their statistics out of the window.

Chris, who was diagnosed with me, told the doctors on several occasions he had worked with asbestos but they didn't listen, it took him 6 months for the diagnosis.  Why didn't they test him the minute he told them about his work with the stuff, they choose to ignore it and probably wasted money on trying this tablet or that before finally doing a VAT.  I wonder sometimes if they just wish we would go away and die, saves them spending money on us that could help someone else who is cureable. 

 

An arguement thrown in by my husband as I showered this morning.  If an oncologist has say £10,000 is he going to treat two breast cancers, who can survive, or one with breast and one with mesothelioma who will likely die in a few years.  Is this what we end up being, a spreadsheet of where the money should go.  What about all my tax and Ni, all those out there who have and are paying it.  Our Governments (all sides) are so liberal with our money on aid abroad, immigrants, free housing and poverty limits, yet come to a cancer created by man  (which made companies a lot of money),  it seems we arne't worth saving because it doesn't look good on the books!  Lets see, if I had died in 05, thats 8 years worth of tax and NI the treasury would be without, say I only paid in £15,000 thats £120,000 for 8 years, times that by the likes of those meso patients who still are alive and like me working, thats a lot more than the one treatment of chemo it has cost.  In my case this is the first chemo the NHS is paying for.  Ok I have had other treatment, 3 surgeries in all on the NHS. 

 

See I am prepared to fight, I probably already have a bad name among the peers in the NHS, but I am not bothered about just me, I fear for the future of us all.  I don't have children (probably due to the bloody meso attacking when I was pregnant) but I have nieces and nephews, I have friends who have children who are dear to me.  I have friends that I hope never have to face this with their own families and I have many friends who are facing this now, and friends who have lost the fight.  Yes Cancer isn't the big scary word it was in 1970 when you really did die within a few months, but that's a natural cancer, this is a cancer created, a fibre that can not be destroyed. 

 

I am calling Researchers, find a way to break down its dna, you found how to do man's, find the thread that can lead to the destruction of this little fibre that can't be expelled from the body because of its unusual design.  Cancer UK give us more money, instill around the country that we need trials ran in every county, and not from drug manufacturers, from our own universities.  We are supposed to have brainy children these days, then why aren't we using them, we have computers than can create imagery and help break down pathways a lot faster than by pen and paper.  Lets get trials ran concurrently, so everyone can have a go, lets make it easy for mesothelioma sufferers to find out what is out there and update the oncologists country wide what is available.  This is what Cancer UK should be doing, breast cancer will become a thing of the past, mesothelioma is and will be a thing of the future.

 

On a strange note, in my dreams at the moment I want to dig a tunnel to my sinus, my mind is convinced that this little fibre is stuck in there and sending its deadly virus into my chest.  Maybe I am going mad but I wonder could the thing be looming in there? 

 

And lastly as I take this interlude, every year since 05 hubby has made a bonfire night, this year, as with previous ones, I was on chemo so he brought the old bin down to outside the door and insisted I still had a sparkler to play with.  I am hoping next year I will be back up the top, eating hot dogs (which I hate but love the smell of) and baked potatoes while watching the fireworks explode in the sky. 

 

 

This is to remind me to stay strong and ensure I am still here for next years.

To my friends who are currently going through chemo and those who are getting ready to start the terrible journey again, I salute you.  To those on trials - you are my hero's.  To those who have no understanding of what it is like - learn about it, you may not be so lucky later down the line.

Cycle 3 - Dose 1: Days 1-5

My heart goes out to anyone that has to cope with chemo of any type, especially those who live on their own.  We know nobody can actually make us feel better, it is truly a journey we have to travel inwardly on our own, as is anything that causes pain. Yet just knowing there is that hand to hold makes us feel a little better.  It's at times like this I feel the most guilty about my mam living on her own those last few years of her life, not that she was on chemo or had cancer, but if she was afraid no one was there in those long night hours.

When my heart goes into meso fallout, I look to Gary as in expectation of him being able to help, I know he can't but we think some one can help, it's a natural human feeling.  I am giving him all those good signals that all is well, I can get through these 10 days because I have done it before, just wish these days were over.  Then we start again, our own fear of feeling this bad forgotten until it starts again.

I seriously can't believe patients can walk through chemo with only the odd feeling of sickness, my body hurts in places I didn't think could put out as much pain.  My kidneys are really doing everything they can, pushing that poison out but boy do they hurt.  I won't take any additional pain killers because my kidneys have to deal with the fall out, so these bad headaches will have to stay until my kidneys stop hurting.  I hurt and moan, I can't express how my body feels, a severe flu but without having flu.  I want to rest but find it difficult to settle, I could read but my eyesight is playing up plus headache makes it a no no.

It is so annoying when you want time to sort stuff out you never find the time, when you have the time it's usually because you're under the weather, therefore can't be bothered.  Back to afternoon tv and quite possibly a nap.

Keep strong all other chemo participants, I hope this journey is an easier one for you to travel.

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.