Bit of a mixed bag!

Not feeling too bad this week but have been having visual disturbances and some dizziness. This together with the usual peripheral neuropathy from the chemo means I am walking like Frankenstein once again and having to hold on to Alan's arm to get about. Went to Maidstone hospital on Thursday – but no chemo or trial . I was not feeling too well when we left but decided to go anyway. The nurse who met and weighed me was not happy with my dizziness and visual disturbances so she called the doc to assess me. They also did lots of blood tests and an ECG and examined me – nothing untoward showing up and all blood tests normal. Anyway it was decided by the docs to postpone treatment this week and give my body some time to rebalance after the events of the  last couple of weeks. The visual problems are down to the chemo. I will see Dr Shah next Tuesday to reassess how I am doing and hopefully continue with treatment next Thursday. The staff I saw  were just wonderful – caring, kind and very understanding. 

Today I took possession of my first WIG!!! I  thought I would play safe first time round and went for something similar to my 'normal' style and colour. What do you think? There is much less grey in the wig but there has to be a plus side to all this. My thanks to Liz - the lovely wig lady who was so kind and supportive and having been through hair loss due to chemo herself she really did understand me.

 

Managed to go shopping  afterwards and spent quite a bit in M&S both on things for myself and some lovely items for the two grandies.I am very late in sending Lilah's parcel this month.

I returned home to find some gorgeous daffodils had been delivered from my warrior friend Debbie. I am overwhelmed by the support and friendship she gives to fellow sufferers - Debbie is the queen of all things 'wiggy' - hope I can be as brave as her in choice of colours and styles!

I think a chill-out weekend is on the cards as there are 3 hospital visits scheduled for next week. On Monday we travel to St Barts (London) to meet with the cardiothoracic consultant. Tuesday is a meeting with Dr Shah (trial consultant) at Maidstone and Thursday we will hopefully resume treatment at Maidstone. This journey is getting arduous but I do not travel the road alone - Alan is with me every step of the way. We will journey on together and continue to fight.

Tess x

These two little people inspire me

Our gorgeous grandson Ethan. Now 16 months old, running about and generally getting into everything. A beautiful smile with lots of teeth! He is learning fast and he is a wicked kisser! Love you sweetheart.

Our granddaughter - lovely Lilah. Now 8 months old and growing fast. She is now crawling. We speak to her each week on Skype as she lives in Toronto. She has a gorgeous smile and likes to grab the web cam! Love you sweetheart.

Trouble at Pharm

...or ‘What a bloody fiasco’

Arrived at Maidstone hospital in good time for my 1pm appointment. I was called to the chemo ward at 1.20 – brilliant we thought. I was fitted with the cannula and had my pre-meds (hydrocortizone and Piriton) to prevent an allergic reaction. So far so good. The nurse went to put on the trial drug and oops its expiry time was 14.20 –it is now 14.00 so cannot use it as the expiry time must be the after the end of the infusion. The drug is only active for 4 hours. So nurse takes the drug back to pharmacy – who were so busy that they made up the trial drug early this morning ‘to save time’. They will make some more.

Fast forward one hour – still nothing doing so nurse puts on a bag of saline to prevent cannula clogging up.

Fast forward another hour – pharmacy are waiting for a phone call from Italy where the drug company is based to get a magic number which will tell them which phial to get from the freezer. Fast forward another hour (hope you are keeping up) – yeah they have the information BUT the Dr said no infusion today as it would not finish in normal working hours and as there would not be enough staff to monitor me closely could we do it TOMORROW!

I was stressed before I got to the hospital after the last reaction so you can imagine the state I was in by 5pm! As one of the lovely nurses said – ‘Why do these things happen to you?’ answers on a postcard please!

So an early night and then on the road again in the morning – thank goodness Alan has just put 3 days worth of music on the ipod which we play in the car and got rid of that awful Poulenc piano stuff!

I am grateful to be offered the option of a drug trial but those managing the trial really do need to up their game in terms of risk analysis – it is in an emergency that adequate backup procedures must work.

Tess x

Feeling the love

Perhaps because it is Valentine’s Day today I am feeling the love. The love from my family and friends that keeps me moving on.

I had some good news today – the scan I had last Thursday shows that the cancer is stable and that the chemo and trial drug are working their magic.

My blood levels that were so low last week have also returned to normal so the treatment will resume again this Thursday. Given recent events my chemo will be reduced by 25% for this cycle and I will receive antihistamines before the trial drug is given. I will be closely monitored during treatment and this will be stopped immediately if there is any indication of an allergic reaction. There is now a new protocol for the chemo nurses to follow for patients on the drug trial as I am not the only one to have experienced a negative reaction. Still sounds a wee bit scarey but if it is working and buying me a bit more time to spend with those I love I have to go for it. Seeing Alan’s face when given the good news said it all – he was smiling with his eyes as well as his mouth if you know what I mean. Something unexpected has happened as well – I have started to lose my hair – the Dr said this was due to the accumulative effect of the chemo. A bit of a shock but you can live without hair – just debating now whether a purple or green wig would suit!

So as it is Valentine’s Day please tell at least one person you love them (preferably someone you know) and if appropriate give ‘em a kiss too!.

Happy Birthday wishes to our lovely son Jon – 37 today – how did that happen?

Tess x

The week just got worse....

Well since coming out of hospital (see last blog entry) and feeling fine things generally got worse. I had a blood test on the Tuesday and my levels were fine. I was still taking high 2 lots of high dose antibiotics. First I develop oral thrush – this made my mouth and tongue so sore it made eating difficult. Then excruciating abdominal pains. My GP prescribed for the thrush and ......... gastritis, and faecal impaction. By Saturday things had got worse – not eating or sleeping was making me feel so weak. Further prescriptions from an out of hours ‘on call’ doc brought stronger pain relief tablets and suppositories for the constipation – trying a dual attack here from both ends! On Saturday when things were clearly getting scarey Alan managed to get hold of a doc who was prepared to do a home visit – my GP would not come out on Friday neither would the ‘on call’ doc. The doc arrived and immediately told me to stop taking one of the antibiotics and the painkillers as they were making matters worse! Fast forward to Tuesday and a blood test at Margate hospital – this was my worst day – hadn’t been up or out for ages so was as weak as a kitten. Not sure how I made it there and back but I did. No surprise then when Karen (research nurse at Maidstone) phoned on Wednesday to say my white blood cells were extremely low and no treatment could take place on Thursday. I am gradually getting stronger and now able to eat. I went to Maidstone yesterday for a scan – surprisingly the journey was fine with no hold-ups or incidents. Today is a better day – just sent Alan to Sainsbury’s with a long shopping list.

Received a phone call from my GP this morning to see how I was getting on! He apologised for not coming out last Friday. Said he would like to keep an eye on me and suggested he routinely sees me once a month – think maybe someone has given him a rollicking!

I hope this will explain my not answering emails, postponing visits and generally ignoring people – not through choice I assure you. I hope normal service will be resumed shortly. Thanks for being there. Tess x