Blog 54 Monday 31st October 2011

Happy Halloween !!

I've had my blood tests this morning in readiness for the chemo starting again tomorrow, this will be the fourth of twelve sessions. Hope is still on half term holiday(incept day) so was very interested when the nurse connected to the Porta Cath, but ran away quickly when the blood was drawn into the phials. My car tax has expired, which normally results in a long wait at the Post Office, luckily this can now be done on-line, I also have an appointment with my Oncologist Dr Macmillan in Northampton, a pumpkin to carve and trick or treating, not to mention Hope's swimming club training tonight. Phew!! lucky I'm semi retired.  The nurse that came to administer the blood tests today was the same nurse that answered my call to the health care at home service 24hr help desk last week ,when I had the chest pains. I cannot speak highly enough of this service and would recommend it to anyone going through Chemo or in fact anything that can be treated at home. We are fortunate enough to have a health care scheme from Wendy's employers that pays for this service. It takes out all the stress of travelling to and from hospital and the waiting that is inevitable involved.  Not looking forward to this weeks nausea and tiredness that is also inevitable.  Tomorrow I will be out of commission all day wired to the iv drips for a total of 56 hours YuuuckK !!

Glad to see the daily visitors on the cluster map from around the world, makes me feel that I'm not actually rambling along talking to myself!!

Blog 53 Friday 28th October 2011

Wow.......... not sure what I've just been through but it was not pleasant. I have been discharged from Hospital following a worrying 22 hours.We are still none the wiser. After the anti coagulant injections in my stomach, ECG, CT Scan, numerous blood tests and blood culture tests, no apparent reason was found for my chest pains. I arrived at A&E at 10pm I have never heard of "barrier nursing," but A&E  knew immediately that I was on Chemotherapy and I was treated like I had Leprosy, but treated in a good way.  I was isolated, but nurses with colds, for instance, were not allowed to nurse me and I was kept away from the general areas of A&E being kept in a side ward. Following initial tests, I was eventually taken to the main ward at 3am, again a private room and again with "Immuno compromised patient" labels on the doors which depicted a big "Stop" hand. I slept until 7.30 breakfast. The following 14 hours were intermittently interrupted by sleeping, eating and injections etc Unfortunately the hospital were not equipped to use the special equipment and needles the inserted Porta Cath needs, so back to, "Just a small scratch" scenario "don't say that, it actually hurts like hell" ! I had been looking forward to see Hope swim in her trials, for Corby swimming club,this had been arranged for last night at 7pm. I never did get to see her swim as I didn't get discharged until after 8pm but she passed with flying colours. Wendy has had to put her life on hold over the last couple of days with cancelled business appointments and juggling with work and Hope.  In a previous recent blog I said I didn't know what would happen if I had a few bad days whilst Hope was on half term holiday, Silly saying that really, as your loved ones always take over. Thanks Wends......................x

Blog 52 Thursday 27 October 2011

Wendy's Blog

Just got back from the hospital and thank goodness managed to see the Consultant. The prognosis does not lend it self to a heart problem as the pain lasted too long. However it is likely that he has a blood clot. Since they gave him blood thinning injections the pain has gone, the grey colour and clamminess has gone. He is still in hospital awaiting another CT scan.

If it can't be done today they will provide him with medicine and send him home, he will then go tomorrow for the CT scan.

His treatment has been brilliant, they introduced "Barrier Nursing" from the moment he arrived in the A&E department last night.  Dr McMillan phoned ahead, when John gave his name to the reception, he was immediately whisked to a private room where a nurse put "isolation stickers" to the doors. He has been kept in isolation ever since. This is too protect him from bugs and infections. Nice one!

We have just taken him a couple of newspapers, orange juice and some fruit, as much to Hope's horror there is no TV in the room.

We will go back at 3.00 and check up on him again and hopefully he will be able to come home with us. He does not want to miss Hope's swimming trials tonight.

Blog 51 Wednesday 26 October 2011

Wendy's Blog

Midnight and sitting here worrying. John has not been well all day, breathless and clammy to the touch. This evening he was complaining about chest pains. Eventually after more nagging (why don't men listen the first time), he phoned the nurse at home 24 hour help line. He explained his symptoms to the nurse and then we had to wait for another nurse to phone back.... a more senior nurse. This then led to  a further phone call from Dr  MacMillan (Oncologist). Dr MacMillan's advice was to present John to Kettering A&E and John then left for the Hospital.

I can't go, Hope is fast asleep and we don't want to traumatise the poor child, she is going through enough. So here I am feeling tearful and alone. I have since spoken to him a few times and....

He was taken in pretty quickly and prepped for an ECG, this showed up a problem so he is being  admitted for further tests and scans. The one possibility is a blood clot! He sounds scared but I know that he is in the best place, I just wish that I could be there to hold my best friends hand, my husbands hand!

You know what the other frustrating thing is, he is more worried about  his car sitting in the car park at the hospital, than himself....again one word....MEN!!!!!!

Blog 50 Saturday 22nd October 2011

Beautiful blue sky and sunny days in England during October, it looks like summer but the winds are now cold. Wendy's mum has now left us, returning for the warmer temperatures of South Africa and I must thank her for all the work she has done especially with Hope. Hope is now on school break for a week. Just finished my 3rd session of chemo which has been much better this time, the side effects have been less challenging due to the longer IV infusion. I have still found it impossible to sleep even with Tamazipam sleeping tablets, and have experienced the severe pins and needles sensation in the hands but all in all much better this time round. I'm having my next CT scan on Thursday 27th October for my thorax, abdomen and pelvis. The last time I had a CT was on my birthday 13th May when they found that certain "deposits" on my lungs had grown from 5mm to 11mm in the left upper lobe and Right lower lobe from 5mm to 8mm in just 3 months. This then led to my recent hurried operation. I have been given a CD of my entire CT scan and can easily pick out the offending "deposits"as they have been highlighted by a contrast agent that was injected prior to the scan. Next Thursday scan will hopefully give good news....................Glenfiddich tonight I think.

   

Blog 49 Wednesday 19th October 2011 Chemo session 3 Day One & Two

Yesterday's Chemo session was a long day, total of 8 hours infusion. Finished at 6pm I felt extremely tired but was unable to sleep last night, especially as I was secured to the Folfuser IV. The IV (Yes Hope) resembles a baby bottle with a Pink lid. It fell on the floor, pulling on the Porta Cath. Got wrapped around my neck, pulled by Wendy turning over, and generally caused a nuisance. I eventually slept at 4am this morning, Wendy was out of the house by  6am, going to a 2 day convention in Daventry (that's what she calls it anyway). I was woken by the garbage and re-cycle truck at 8am. Luckily Sue (Wendy's mum) is still with us, so she took Hope to school. Half Term next week, Sue is back in South Africa, I'm not sure what I will be able to do with Hope, if I have a few bad days after half term. At the moment it's one day at a time. My blood results came back OK, but the white and red cells count have "Dipped" again which is expected, but analyzing and projecting the loss of these vital elements over the next 6 months, my Chemo will be suspended around January if the loss of the elements happens at the same speed.  Tonight, it's parents evening at the school, with Wendy away, I will go. I'm sure the conversation will be on, how Hope is coping at school and with my situation. I am hoping she has opened up to the teachers on how she is feeling. I had an interesting conversation with my oncology nurse yesterday, she was discussing how my bowel cancer ended up in my lungs but also how the disease, when being attacked by the Chemo drugs,  actually migrate to get away from the drugs and try to find a new home in other parts of the body (clever little bugger's ain't they) fortunately the cancer cells use the blood stream to migrate, hopefully then, the cancer cells will be stopped in their tracks there and then by the Chemo Police and zapppedddd . But you can never find a copper when you need one can you !!!!!!

Blog 48 Monday 17th October2011

Start of my third Chemo session this week. Today I have had the bloods taken by the visiting nurse, who also asks loads of questions of the various intensity of the symptoms experienced on last session. I have had a week off from the Chemo which has gone very quickly, and am not looking forward to this week. As previously stated the symptoms were far worst the last time and the Doctor with a big smile on his face said "Yes, the side effects were bad but they will get Worst"..... eh..... don't you mean they will get better doctor?.......... "No (smiling) they will get worst" !........ I suspected that.. I have also had the results of the ultrasound scan last week on my hand and the one vein is completely blocked by a blood clot from the use of cannula's but at least the swelling is going down. Tomorrow the nurse is with me from 9am to 5pm as the entire Oxaliplatin regime is now being infused over an 8 hour period, then the 5FU Fluorouracil is given over a 48 hour period. The 8 hour infusion is because the Oxiliplatin effected me so badly the last time and just means that the Folinic Acid (Leucovorin) and Oxiliplatin will be set to drip through the IV at the same pace as each other but over a much longer period. (Day time TV here I come)


Hope's Blog Tuesday 18th October



Today my daddy had the folfusor well we call it a babys bottle ha,ha.Today the lid is pink last time it was reddish brown and the first time it was pink.Before I knew what colour it was going to be I guessed green and the last time he had it I guessed black.

Blog 47 Thursday 13th October 2011

Today I have an appointment at Kettering X-Ray department for an ultrasound scan on my hand. With the constant use of cannula's for IV's you may remember in a previous days blog I reported that I believed I may have had something left behind in my vein. The doctor and surgeon said it was a blood clot, which I probably accept now as after the last 2 months waiting for the scan appointment the vein has returned to normal. Tomorrow the nurse will be here to give an IV of saline to clear out the Porta Cath ready for next weeks session. With the onset of colder days and people sneezing all around me, I am becoming more concerned at getting colds and flu etc I don't often suffer, but when I do get a cold or flu it always ends up as a chest infection. One of the side effects of Chemotherapy is {Neutropenia} a lowered resistance to infection, as the chemo drugs destroy the white blood cells that fight infections. On my week off from the drugs I have researched, what diet may assist in order to bring up the blood count but found that it is quite controversial "The Oncologist" magazine has recently said it is not scientifically proven that a diet will assist 
Guidelines given to neutropenic patients regarding diet are currently being studied. As of 2011, the Neutropenic Diet Guideline includes the following recommendations

• Avoid raw vegetables and fruit.
• Avoid take-out foods and fast foods and fountain drinks.
• Avoid aged cheese.
• Cook all produce to well done. Eggs must be hard-boiled.
• Avoid deli meats.
• No raw nuts, nuts roasted in shell, or freshly ground nutbutters from a healthfood store.
• No yogurt

I thought the Atkins diet was bad !!!!!!

Hope Naisbit's blog (Johns daughter)

Avoid cold stuff
And thats about it
Now be a good boy daddy we don't want anything happening to you do we.lol ha ha.

Blog 46 Tuesday 11th October 2011

I have slept most of the weekend, all day and night. I have no energy and feeling very lethargic. I have tried not to sleep during the day; on instruction from the nurse, but my available energy versus's available gravity puts me on the back foot all the time. Weird though, that I am able to sleep well at night. I put the daytime sleeping down to a chemical sleep, all the chemo drugs still racing around perhaps. I have noticed that the last session side effects have lasted a lot longer i.e tiredness and headaches are still with me and I am getting blood staining from my nose. My next appointment with the Oncologist Mr Macmillan to discuss the lingering side effects is 6pm on Halloween !!! that's also weird, trick or treat I wonder..........

Blog 45 Thursday 6th October 2011 Chemotherapy Day 3 Session 2

Side Effects
This session has been awful I have reported to the nurse of the side effects that have occurred over the last two days but especially today. When eating even the smallest morsel, my jaw has locked, this has occurred on several occasions. I also had muscle spasm's in my hands, causing them to close tightly for short periods of time but quite frightening.  I also have muscle spasm's in my face which caused my eyelids to close involuntarily (nothing to do with the tiredness, I was walking hope from school) I became very sleepy and slept most of the day yesterday and all afternoon today.Having reported this, my nurse telephoned Dr McMillan (Oncologist) who immediately asked that future Chemotherapy sessions are extended to Eight Hours IV Infusion. This is where I get the :-

Treatment
Ondansetron a powerful anti sickness drug via IV drip,
Dexamethasone is a potent synthetic steroid drug. It acts as an anti-inflammatory and immunosuppressant. It is 20 to 30 times more potent than the naturally occurring hormone cortisol .
I then have Magnesium Sulphate and Calcium Gluconate in IV this is taken just before and just after  Oxaliplatin two hour session of the main Chemotherapy Drug
IV of Folinic Acid Folinic Acid assists the Oxaliplatin but please click on the links for the full explanation.

This was previously taking approximately 6 hours which will now be extended to 8 hours

5FU Flourouracil   I then have this as a  48 hour IV which sits on my belt and is administered at 5.07 mls an hour

Blood Tests
I have started plotting my blood results as I noticed a few of the categories have "Dipped" I have put them onto an Excel Graph and downloaded the Translation and "Normal Ranges" Hopefully the translation and normal ranges may be helpful to others reading the blog and will endeavour to publish them. I've got time on my hands so I can do this sort of thing!!! I also have cancer markers within my blood tests and found it quite interesting whilst reading up on this that Cancer Markers can be requested along with a blood test that any Doctor can request.

Cancer Markers Blood Tests
Examples of markers your doctor may test for include:

• CA 15.3: used to find breast and ovarian cancers
• TRU-QUANT and CA 27.29: may mean that breast cancer is present
• CA125: may signal ovarian cancer, ovarian cancer recurrence, and breast cancer recurrence
• CEA (carcinoembryonic antigen): a marker for the presence of colon, lung, and liver cancers. This marker may be used to determine if cancer has traveled to other areas of the body.
• Circulating tumor cells: cells that break off from the cancer and move into the blood stream. High circulating tumor cell counts may indicate that the cancer is growing. The CellSearch test has been approved by the U.S. Food and Drug Administration to monitor circulating tumor cells in women diagnosed with metastatic breast cancer.
• (EGFR)epidermal growth factor receptor Giorgio V. Scagliotti, MD, PhD, head of the Thoracic Oncology Unit, Department of Clinical and Biological Sciences, University of Turin, San Luigi Hospital, Orbassano, Italy, stresses the importance of testing and treating non-small cell lung cancer (NSCLC) patients based on the mutation.

The markers that are checked in my Blood tests are CEA & EGFR

Wendy's Blog

Looking in on what John is going through is awful, as a Mother and Wife your instinct is to want to take the pain and worry away from those that you love, but you know that you can't. At the moment I have an extra pair of hands in the house with my Mum here but that is for only two more weeks so I am know looking at what to do when she goes. I was looking at chest freezers today so that on weekends I can cook for the week ahead as John is really struggling with the pins and needles in his fingers and hands. Cold effects them really badly. When I get home from work it would be easier if the food was pretty much done.

When John is asleep I keep checking on him and check to see if his chest is moving as he is in such a deep sleep (which is so unusual). I am also worried that he will get an infection that when I pass him I put my hand on his forehead to check temperature and if he feels clammy the thermometer goes in to his mouth.

I am constantly walking around with a sick feeling which is caused by worry, worried for John, worried for Hope and worried for the boys.

Hope's Blog

I'm really worrying about daddy he doesn't have his chemo on today but he still has the cold affect.I'm in year five and all the teachers are worrying about me even my year four teacher is, at least I have teachers and my friends to talk to.Sometimes when my mummy isn't home I have to help daddy get some stuff out the fridge and freezer cold!

When my dad read the blog that I wrote he nearly cried.My mum then said have you read mine obviously NOT!!!Because hers is in black and mines pretty like I am.B)

Blog 44 Wednesday 5th October 2011 Chemotherapy Day Two session 2

Throat and mouth very bad today and Jaw keeps locking when I eat. Also getting the pins and needles sensation inside mouth. Haven't felt sick today but drinking lots of tepid water. Completely missed my steroid tablet today which was foolish took the anti sickness but forgot that one. Glad to see the cluster map is filling up and the followers from all around the world, it makes me feel better for sharing my thoughts and even better when someone actually reads it! and if at all possible bring further attention to Bowel Cancer and the absolute urgency of catching it in the early stages. 45 and over?? get a colonoscopy every couple of years.  

Blog 43 Tuesday 4th October 2011 Chemotherapy Day One Session 2

Hopefully, I can show the paraphernalia that goes with a Chemo session. The boxes on the table are full when they arrive, of  various IV's  Drugs and Folfuser. IV's and drugs for today and Folfuser for next 48 Hours. IV's and drugs today only took 4 hours to administer and fit the Folfuser.

I have started feeling far worse symptoms today, after the session than I did the first time. My appointment with Dr McMillan yesterday, confirmed that this may be the case going forward to the next 10 sessions. Headache has returned, discomfort in the mouth and throat,  especially when eating. Can't eat or touch anything mildly cold as severe pins and needles takes over with a burning sensation

The drugs and IV are all explained in my previous blog 36 and all carry side effects. One bit of good news my blood tests came back OK. I have been reading on Twitter that your Chemo session is suspended for two weeks if your white cells come back low or in some cases zero! Again I count myself lucky and wish those in that situation well and get those bloods back a.s.a.p.

Blog 42 Monday 3rd October 2011

My memory is shot and I'm not talking laptop! How could I forget to use the EMLA anaesthetic cream prior to the nurse visit today, especially as I mentioned this in my last blog. This morning is blood tests prior to second session of Chemo. The needle used to access the Porta Cath is very small and has a slight bend but needs a fair amount of pressure to insert it, firstly to enter the skin and secondly to break through the membrane of the Porta Cath Again Ouchhh but this time it's my fault.




This is a wonderful device and certainly gives the veins in your arms a rest. The device is flushed with saline and then when bloods are taken or drugs by IV the Porta Cath has Heparin Sodium Flush injected this is an anti coagulant for the IV line. Last week I reported that the nurse could not draw blood via the Porta Cath which at the time was not a problem today was the same, so I was asked to rotate my shoulders and lift my arm up and down. Suddenly the phials started filling up, suddenly I saw myself performing this ridiculous ritual on "Worlds Funniest Videos" on the tv. Not ! no not even UTube!!

Later today, I have an appointment with Mr El-Rabaa my bowel cancer surgeon in Kettering for a follow up and later this afternoon an appointment with Dr McMillan my Oncologist in Northampton to see how the Chemo is going. Busy Busy Busy tomorrow Chemo starts again...................................round 2 .........ding!


Hope Naisbit : I'm not so sure about that white picture it looks quite yuk especially whats inside of you it gives me the shudders uhhh