Good News and This and That

Well I have got to the end of another chemo regime – a few hiccups this time but we made it. The hair loss and visual problems still persist but hopefully these will be resolved in time. I had a review with the consultant at Maidstone today who reported that my cancer was ‘stable’. This is the best news for me. Awaiting scan results is perhaps one of the most stressful situations imaginable. Your life can change in a matter of moments depending on what is reported. Planning your life between scans is so hard – for me while I am still on the drug trial involves 6 weeks at a time. So I was asked if I wished to stay on the trial or not. Of course I said yes – doing nothing when I have a choice is not an option. At some point I will not have any more choices. So we embark on the new phase of treatment – trial drug/placebo without backup chemo.  This will continue as a weekly infusion at good old Maidstone with a review every 3 weeks and a scan after 6 weeks. While the disease is not progressing treatment will continue.

We had a fun weekend with my brother & partner – lots of laughs. They are off to Australia on Thursday to visit Norma’s son Nick who now lives there. Have a great time my little possums!

Bernie brought a bottle of 1963 port to help celebrate Alan’s birthday which is on Thursday. Between them they finished it in one evening!

Yesterday I spent a very emotional hour or so watching my little 9 month old granddaughter on her first day at ‘college’  - Kinder College in Canada. They have a web cam set up for parents and grandparents only to look in at any time. Very secure. This is her ‘induction week’ before mum returns to work at the beginning of April. I must say little Lilah seems to be attracting the boys already! Silly old Nana has got through a box of tissues! Ain’t technology wonderful!

My darling grandson Ethan continues to grow and develop at an alarming rate – this week has seen him overseeing the planting of a vegetable plot and the painting of 2 Adirondack (Muskoka) chairs!

I am taking Alan to Winchester for his birthday and then a trip to France next week. While the weather is good and I am good we need to pack in what we can.

Listened to the Supremes and Dionne Warwick on the ipod travelling too and from Maidstone today – brilliant!

Onwards and Upwards. Tess x

A Good Week

It has  been a good week.

We had some friends visit last week from Enfield – great to see you Harry, Jacky and Ray. We visited the Turner Contemporary Gallery in Margate to see their current exhibition – Turner and the Elements. Turner is not my favourite artist – I have a theory that all his sploggy skies cover a multitude of mistakes! 

The flowers you brought Jacky are stunning now – all the buds have opened.

Tuesday’s and Thursday’s hospital trips to Maidstone were  fine – just the usual delays which we have learned to live with. I had the trial drug and Day 1 of  the last chemo session. I have Day 8’s chemo this Thursday and then it is finished.

Mother’s Day was just perfect. I opened an email from my granddaughter in Toronto wishing me a Happy NanaTess Day – such a clever girl for 9 months old.

I received a lovely bouquet from them later in the morning. The flowers are shown on the top of this blog entry. Then a Skype call in the evening – they were all looking so happy.

To complete my perfect day my son Jon and grandson Ethan came to visit. How gorgeous Ethan is now – running everywhere and great fun – I allowed him to splash the water in the birdbath and he loved it but got soaking wet (he doesn’t yet understand ‘gentle’). Anyway he had a change of clothes so no problem and I have found I can get away with anything now and no one tells me off! Received more pressies – a hand (or rather foot) painted pot from Ethan and some scrummy bath products from Jon – thanks guys.

Alan (just call him Masterchef) cooked a great roast pork lunch for us all – it was yummy!

Here is a photo of Jon, Ethan and myself.

Today was another gloriously sunny one so we decided to take a trip into Canterbury – some retail therapy and a fab lunch in Carluccio’s. It was lovely to see all the daffodils open and dancing in the breeze all around the city walls.

So yes it has been a very good week – lots of fun and lots of laughs.

Tomorrow sees the start of another busy few days medical wise – blood tests, CT scan, drug trial and the final chemo session.Onwards and Upwards!

Tess x

Perfick!

Trial day today. Appointment 12.30 pm. Called on-time - no problems. Meds all in order.  Thank you Maidstone - what a difference when things go according to plan.
Sun is shining! Beach Boys on the ipod! Surf's up! Perfick! Tess x

Maidstone Madness continues.

I resumed my treatment today – trial and chemo. On my computer printout list I have a 2pm appointment. Left home at 12.30 and arrived at hospital comfortably at 1.40pm. Checked in and sat down and waited and waited and .... We are accustomed to delays so we were not unduly concerned. At 3pm Alan asked at the desk how long was the delay (nothing is ever posted) and he was told they are running late and we would be called. At 3.45 Alan asked again – we were getting concerned that the trial drug would expire again as it did before (it is only active for 4 hours). The lady at the desk suggested that Alan went down to chemo unit and enquire there. Off he toddles only to return 5 minutes later ‘Houston we have a problem’! My printout reads 2pm appointment – their computer system reads 4 pm appointment! We went in search of Karen (research nurse) and although scheduling is not part of her role she went to investigate....

Yes they had changed the appointment yesterday.

No they do not know why it was changed.

No they had not informed me of the change.

They do not know why I was not informed.

They do not know who changed it.

Karen suggested we complain to PALS.

So treatment finally got underway and we arrived back home just before 7pm.

Please tune in for next week’s episode of ‘Maidstone Madness’.

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