End of Chemo Again and Rebuilding Health!

18th December 2012: I have had trouble getting on line, so this blog is way behind now!

My very last cycle of chemo was 1st and 8th October! Hooray! But how awful I felt with the side effects, as it is accumulative. My cough was exhausting and even after another course of anti-fungal pills (in case it was thrush again), within a few days it had returned. I read the small print in the literature and it said I should have a minimum of 14 days course for throat or internal thrush. I had only had 7 days at a time. So I left a message with my gp, and got another 7 days prescription. I was too busy for this, and had lots of events I had been invited to!

15th - 18th October spent a lovely few days in Selsey with my midwife friends. Jo's newly built Skandihaus (on the footprint of the old bungalow) is amazing! I did not walk as far as I had hoped because I had not done any exercise since finishing my 100 mile walk, due to the chemo side effects. However, the little walks I did, the sea air and the company of friends was very invigorating. I returned home quite refreshed.

Got back in time on 18th Oct. for Marie's 50th birthday lunch - I watched the end of their tennis tournament but I had not planned to play in that as I was fit enough yet. It was great to be with all my tennis friends together (known as The Mad Racquets).

The following week I had my check up scan (the results not for two weeks) then on Sunday 28th October I went to the NTC Music Band Contest at Burgess Hill, where I had been invited in order to show off my Olympic Torch, and hopefully raise some money for GRACE. It was a huge and brilliant event, with boys from younger than 10 and up to 18, performing their marching and musical playing skills at the same time! Wonderful to see.

My cough was worse and very tiresome. I needed to see a gp again. I think, with my low immunity, I had picked up some winter nasal and throat infection on top of what I had already. I had a week to wait before that appointment and had to make do with home remedies.

I was invited to the GRACE Autumn Fair, with my Torch to raise money again, on 7th November. A very cold and wet day, but hot coffee revived me, as well as the joy of meeting so many good and important people: my Consultant, Simon, his secretary(also the GRACE secretary), the lovely Betsy, who is so kind to me, Amanda Burton (yes of tv fame!), the Mayor and his wife and many more. It was extremely busy and quite packed out, so I hope they managed to raise a lot of money for GRACE. We had our photos taken for the press, and for ourselves, together with the dignitaries and celebrities!

The only blot for me was having to go outside, or to the ladies, to have a good cough every now and then! I hoped my gp could do something for me. It was nearly a year and I was tired of it. Thank goodness, a few days later, I saw my gp, who was very accommodating. Realising my low immunity from the chemo, and my problems with thrush and antibiotics, she prescribed amoxycillin for 7 days, along with the anti-fungal pills for 14 days! Job done! I still have a cough, but this is the clearing up process after having suffered it for so long! It is minor compared to what I had before.

13 November 2012: My scan result appointment! Very nervous about this one. I felt no symptoms so hoping for the best. I saw the expert Sophie, one of the Research Doctors in St Luke's. She was very good and explained everything in detail, answering all my questions. I was reassured, even though there are still some metastases in the liver, they are much reduced in size, and the liver is now normal size. Also, there are other treatments now, from all the research, so that when it returns, I still have hope.

27 November 2012: Rockchoir at Denbies Vineyard in Dorking. Since I have not been able to sing, with all of this coughing and laryngitis, Helen - a good friend who was also in Rockchoir with me - and myself went to watch this time. It was amazingly good! Did we really sound like that when we were in the choir? ! Very enjoyable.

December has been even more busy than November! I also started playing tennis again - I need to now because I have not had any real exercise since early June and began to feel very unfit and overweight! It does not really help that after each tennis game (a short one for me at the moment), we indulge in cakes, biscuits and chocolates with our coffee!

This is the season to be jolly, and eat mince pies and drink mulled wine, so why not! I have had several invites to friends' and events leading up to Christmas, so nearly every day there is a good reason to keep celebrating! Cheers!

Have a very Merry Christmas and here's wishing us all a Happy and Healthier New Year 2013! 

Not a good month for me...

30th September 2012:  I have not enjoyed this month at all!  My laryngitis and very bad cough returned within a few days of stopping the antibiotics a few weeks ago. I was getting headaches when I coughed, as well as some liver pain again. My gp sent me to be investigated at East Surrey Hospital, where they seemed quite concerned that I had had this cough for 9 months!

They were very thorough. I had lots of tests - bloods etc., ecg, chest x-ray, brain scan (at least I know that I do have a normal one!). I had some intravenous antibiotics as my temperature was slightly elevated.  I also had my PICC line flushed and the dressing changed. What a long day!

Eventually the consultant doctor came to see me with all the results. First, she thought my cough was caused by 'thrush' on the vocal cords from taking too many antibiotics over the 9 months! Never heard of it there before! Then the Good news or bad news. Good, that my brain scan and x-ray were normal. Bad, that my Hb was low, so I would need a blood transfusion. I had to wait for a bed to be available and bloods to be got ready (another sample!). I waited until about 6pm and then asked the consultant if I could go home, as I had been there since 8.15am! I had to return the next morning for the transfusion.

My cough started to clear within 24 hours of taking the treatment for thrush! Amazing!

The blood transfusion gave me a new lease of life - no wonder I was so tired!

The sputum samples were apparently tested for TB - obviously clear because I could not have been a nurse and midwife if I was not immune to that bacillus! So, clean bill of health. Now I just have to wait for the end of my chemo to feel healthy! My 6th and last cycle starts this week, so not now long until I finish treatment.

As you can gather from this lengthy medical report (!) I have not been out and about, nor particularly active this month at all.

The best evening was at a friend's 60's night, which I managed to get to, despite being only 3 days post chemo (dosed up with my steroids, anti-emetics and paracetamol!). We all dressed in 60's fashion, played 60's music, and ate some food recipes from that era - do you remember long frilly flowery frocks, lots of long beads, beatles music etc., prawn cocktail and tinned peaches and evaporated milk for cream?  Black Forest Gateau was not on the menu because some did not like it! However, the Babychamp went down well. It was a great evening, culminating in us dancing outside by the 'fire-pit'. See photos below.

Jo, Me, June Liz, Marie, Dolly, Ann and Helen

Liz looking very flower power!

Me by the fire-pit pretending to smoke a joint!

Spooky fire-pit dance!

The wind was blowing the smoke in our eyes and getting colder. It was probably the right time for everyone to go home, but we warmed up first with 60's style floater (liqueur!) coffees and chocolate mints! Brilliant!

August has gone in a blur of Olympics, chemo, heatwave and rain!

2nd September 2012: The Olympics, Start of Paralympics, Chemo and changeable weather - that was August! 

Apart from my sister, my son Philip, or my good friend Helen, I have hardly seen my friends or family - they have nearly all been too busy travelling on holiday, doing their gardens, watching the Olympics, watching grandchildren, or playing tennis! I have managed to watch some of the Olympics!

Unfortunately, as well as chemotherapy, I have still had with my chest infection, until I saw an emergency gp and started yet another course of antibiotics (Clarithromycin), which seemed to do the trick - after 8 months and four antibiotic courses!

I have just completed my 4th cycle of Carbo-Gemcitabine, which lucky for me seems to be working! My ca 125 (cancer marker) is down to 34, which is within the normal range. It was very busy on Tuesday (Monday was a Bank Holiday, so it was a double clinic), but Simon, my surgeon, was very happy to break away for a couple of minutes, to see my Olympic Torch and have a photo taken with me!

My bloods were normal, so my chemo prescription was ready early.  I had my infusion at 1.30 instead of 3pm and we were home by 3.30pm!

However, my liver does not like the treatment, as it has, for the last two days, been giving me some pain. Saw my gp, who gave me very strong pain killers and anti-inflammatories, which sent me to the moon and back! I have been really spaced out and feeling dreadful, but the cancer is being killed off and the pain has gone! I have resorted to safe paracetamol and ibuprofen, which are now controlling the pain without making me feel 'high'! Some people would pay a lot of money to feel like that!

Today, it is drizzling and cool, which is a shame, because I have a choice of two BBQ's to go to. I might not go to either of them if the weather continues like this! Ah well, there is always the Paralympics to watch on TV!

Yet another Torch Photograph Opportunity!

7th August 2012:-  My consultant Aggie Michael was not in clinic last week, so she did not see my Olympic Torch! Consequently, I decided to take it in to St. Luke's again today, when I have my appointment at 10am. My day 8 chemo, if bloods are ok, is due at 2pm.

My sister took me again, and luckily she took her I-pad, because the Torch Photos were in demand again! First, I took it to show to Dr Michael, and both she and Dr Saleh were delighted to see it and hold the Olympic Torch! Dr Michael took photos with her 'phone.

On return to the Reception area, I became gradually surrounded with patients, visitors and staff wanting to see and touch the Torch. They were impressed and delighted to get a chance to actually see it live, and even hold it for a photo.

I made a joke to a few people there, about what the man last week said about being my 'agent' and that I should charge £1 per photo for GRACE! People laughed and quite a few had their photos taken, with Val emailing them their photos from her I-pad. Then, gradually, one or two came up to me and pressed notes into my hand for my charity! I looked in my hand, and found two £20 notes and a £10 note! Thanking them very much, I then thought I had better ask whether they would mind filling in a sponsorship form and whether they paid tax for the extra 25% gift aid! More notes were put into my envelope for GRACE, and the forms I had were completely filled up! I made a short trip to the GRACE secretary's office, to tell her of this extraordinary generosity, and asked for GRACE leaflets and more sponsor forms.

Photos and donations continued until after my clinic appointment (when my sister took over as chief photographer and collector!), then through the lunch period when we were all watching the Olympics (coincidentally) on the television in Reception! I was called for my chemotherapy about 1.30pm, and some nurses then also wanted their photo taken holding the Torch, as they had missed it last week.

At the end of my time there, all these very kind and generous people had donated £85! More of course with the gift aid.

This has now brought my grand total, so far, including gift aid worked out just for the off-line donations, to £1,608, or 107% of my goal! Thank you everyone. GRACE and myself appreciate it very much.

Another Day of Fame!

31st July 2012:-  Took my Olympic Torch to Guildford to show to staff in the clinic. But  right from the time I went into Reception, I was surrounded by everyone, from patients, to visitors, to staff, wishing to touch the torch, hold it and be photographed holding it!

Luckily my sister, Val, had brought her I-pad so was able to oblige with photos for those who had no camera or 'phone. After taking their photo, she emailed it to them instantly! I also showed some my copy of the Sussex Gazette, which had  me on the front page, with 12yr old Sam lighting my torch, 'the kiss', as well as the same, but larger, photo across a middle spread! Many people wanted a photo of me and the torch with them, and one man also wanted a picture of the press photo for his children, who had studied it all at school. Another man said he would be my agent, because I could be collecting at least £1 per photo for my charity! I felt uncomfortable doing that, and carried on being 'famous'! Obviously, I explained how and why I was nominated by GRACE.

Good news re my treatment - my ca 125 (cancer marker) has more than halved down to 48, so even though I only had one complete cycle (day 1 and day 8) and day 1 of my second cycle! My third cycle starts today, and if my bloods are normal next week, they will re-instate day 8.
That should get rid of the problem a bit quicker!

The Most Amazing Day of My Life!

17th July 2012:-  I still cannot utter more than a forced whisper, but feel excited and elated, so that will carry me through this long day! 

I live in Copthorne, West Sussex, and the Olympic Torch came through the Village this morning at 9.45 am. As I did not have to be in Crowborough until just before midday, I had time to watch the parade and the Torch being carried along Borers Arm Road. I had to be ready in my white outfit 'uniform' so that we could leave in good time to get to my meeting place in Crowborough. This created a huge stir whilst I was waiting, so my 'Moment to Shine' actually started early in Copthorne, with many people and their children wanting photos with me in the uniform, even without my torch yet! The local nuns also got in on a photo! Amazing start to my day!

CROWBOROUGH:  We made good time to the Beacon Community College, so early in fact that there was no one there to meet us. However, whilst we had a flask of our own coffee (no cafe here) standing by the car, we were approached by a BBC journalist, who was looking for worthwhile stories to air on the radio.  I managed to make myself understood with my whisper, with the help of my friend Helen. The journalist was very interested to record us, and went off to find her producer, to whom she introduced us. They had to go off and set up their equipment, and we had to find our own meeting place. We agreed to meet them later. They were sure they could find a way of recording my 'whisper'.

First, we waited to be signed in and have our id checked. My friend Helen was to be my escort, which I had requested, what with having only had chemo several days before, and my laryngitis and chest infection, I was not sure I could manage without assistance, in case I felt dizzy. It was a hot day too and my breathing was not easy, even after using my ventolin inhaler, plus my dreadful cough. Close friends and family thought I should not be doing this, but how could I NOT do it! A once in a lifetime experience! An honour! One of only 8000 in the country! Part of an historic event that will never happen again in most of our lifetimes! I would dose up anything I have to get through this day! Plus an important cough lozenge as I set off - after all it was only 300 metres! I had walked 100 miles two months ago - I could walk this short distance surely!

It neared the time for the torch to arrive at the College to be shown off, with speeches, to all the children waiting in the huge playground area. We were ushered to the 'show' area along a double row of smartly uniformed sixth-formers and given a good place to watch the children do their show before the torch arrived.
This was the last torch of the morning session. There were several of us doing the afternoon session, and after this show parade in the College, we all had to go for our briefing, whilst the police escorts and drivers had their lunch. (There was nothing for the Torch Bearers, except water).

After our briefing, we were shown to the team shuttle bus. It was so hot, and the bus was stifling. The others all stood outside, but by now I was flagging. (We had been here two hours already, mostly standing). I had to climb in the bus to sit down. Helen was allowed to accompany me thank goodness, as she understood my condition, without me having to force a painful whisper to others. The nylon uniform was too warm, with its long sleeves, and I had put on a t-shirt underneath first thing in the morning, as if it had been cool, we could not wear anything on the top of it. I discreetly removed the t-shirt, as no one else was in the bus!

1pm - Almost time to move off - the police escort and our Lloydstsb team leader arrived, she briefed us in the order we had to move up the bus ready to get off at our designated spot (my number was 69, following young 12 yr old Sam who was 68, who followed our first torch bearer of the afternoon, who very bravely decided to give up her wheelchair and walk her 300 metres). We were handed our torches as we were waiting to alight, and had already been given a gold wristband if we had bought ours, to retrieve later once decomissioned of the gas canister.

 Our shuttlebus is moving, following the escorting police motorcyclists, the parade of open topped coaches with bands and waving and dancing corporate sponsors, plus the Media Bus with the photographers sitting on the back of it to be in front of the Olympic Torch Flame and Bearer, videoing us as we went along!

Nearing my drop-off point, we were all waving at the lined streets, and I spotted two familiar faces waving like crazy, as I stood in the front with my torch ready to alight! One was a fellow chemo patient and her friend who always accompanied her to the hospital - how wonderful that they came! All too soon, it was my stop - it was difficult to get off because it was so crowded, and people surged around. Luckily I was met by one of the police escorts who showed me where to stand and wait for my flame, from young Sam, to arrive.

 In the meantime, I had ten to fifteen minutes to meet, greet and be photographed with family and friends, but where were they? There were so many people, it was just overwhelming! Suddenly, I saw my sister Val with her I-pad at the ready as a camera and video in one! Big hugs, lots of photos, my niece Karen and her daughter Amelia, my great niece, her granddad and grandma, (my brother Alan and his wife Sue).

Once photos had started, I was surrounded by total strangers, one after the other, thrusting children and babies forward for photos with me and my (as yet unlit) torch! I was just smiling and posing this way and that, bending down for little ones to get in on it, standing for grownups pointing cameras at me, with a brief request 'this one is going to America' ' this one is for Australia' 'New Zealand'  'South Africa' 'India' - I think the whole world was represented in my little corner! I could not stop smiling - what an unexpected joy! (and I was worried the street would be almost empty because no one knew me in Crowborough!)

My son, Philip, appeared, camera already working. He had such a huge proud smile and we hugged. I was surrounded again! Other friends tried to get close to me, and I made room for them, and their children to have some photos taken. Suddenly, I had no time to tell anyone where to meet me - I think I managed to whisper to Helen, tell them to meet us at the Beacon Community College afterwards, because all too soon my police escort steered me to my spot on the road, where Sam was running up the hill to greet me and 'kiss' my torch with his flame! We had to turn and smile at the cameras for a last picture before I set off, and Sam's flame was extinguished after mine was lit. What a feeling! 

Lighting of my torch from Sam's flame!

I started walking a bit shakily down the High Street, which was thronged with cheering and a sea of waving flags and banners! 

The beginning of my 300 metres - huge cheering crowds!

I turned to make sure Helen was near me, but they had ushered her to the edge of the street with the other police escorts, and I had a very tall policeman alongside me (the one who turns the key in each torch to open the gas or switch it off, and points at the cameras for us to pose), He could not hear anything I whispered to him up there on high!

 Nevertheless, I was soon enjoying my 'Moment', waving to the cheering crowds, with the Torch held high in the other hand. It was quite heavy (and top-heavy from the gas canister in the top), so it had to be held a third of the way up. I had to keep swapping the Torch to both hands, then one then the other. I got the hand of it, waving my right arm to the crowd on the right whilst holding the flame in my left, then switching to wave to the other side! It was sheer joy!

Trying to jog a bit whilst holding torch and waving!
Great fun!

I was aware that my police escort was telling me I should run now. RUN! HE HAS TO BE JOKING! I whispered, I can't run. So he said well trot, or walk a bit faster! Was he trying to ruin my day? I wanted to tell him to trot off, but I saved my breath! I complied with a little trot, but my legs were not there, so I walked again, and tried to speed it up. Still smiling and waving, spotting friends in the crowd, Valerie ran out of the crow to hug me, Jo stayed back waving, and seeing my son trying to run backwards while photographing me! Wow! Such enjoyment everywhere!

The whole thing was surreal! The waving and cheering followed us all the way, and as we got to the traffic lights at the A26, it turned left and went uphill a little. Oh, it's nearly over already! Still trying to trot a bit or walk faster, I started to seriously get out of breath, so I slowed right down and gesticulated for Helen to come over - I wanted her to tell this policeman to stop telling me to speed up. He asked 'what do you want her for', and I could not respond, so I carried on walking slowly, smiling and waving at the huge cheering crowds, acknowledging another few good friends along the way,  until I reached my 'kiss' point for the next runner.

Out of breath and calling for Helen, but not far now

It had been incredible, but I could not wait to sit down in the bus - my legs were giving out as well as my breath, and I was quite lightheaded! My police escort actually then asked me if I was alright, as I was panting. Of course I was! I had just taken part in the most beautiful and memorable event that I would ever achieve in my life!  Then our torches were held together and we turned  for my last picture from the Media and crowds as our torches 'kissed'! My flame was extinguished! My 'Moment to Shine' over! I happily, but sadly too, got on the shuttlebus, which then followed the relay and picked up the other runners as they finished, along the circuitous route back to the College.

With our decomissioned Torches back at the College!

My family and friends met me afterwards at the Community College - wondering where we were, because it took so long for us to return there. After watching some of the  BBC Video in their viewing room, and being given our torches, with more photographs with everyone, we looked for our BBC Sussex Radio journalists, but they had left by then, so we followed each other to a pub for something to eat - Helen and me had not eaten a meal since breakfast, and it was now about 3pm! No wonder we were flagging! The pub was so crowded with all the spectators as well as some of the runners, that we had to wait about two hours to get served! We could have driven home in that time, but at least I got to celebrate with my family and friends! We had some cool drinks and snacks whilst waiting for the food. Scampi and chips never tasted so good!

20th July 2012:- I have been in bed most of the time for more than two days! Antibiotics are working now, and my voice has become a squeak rather than a whisper, but it is still not easy to talk. 

My sister emailed me her photos and videos - good quality from her i-pad! I have sent some to friends, and to GRACE secretaries, but although they received the photos, they could not open the video stills - too large for the hospital computers and probably blocked. Shame, because it gave the atmosphere exactly, and Val had got shots of people jumping in the way to have their photos taken with me!  I have also sent the BBC video to anyone who wants it - here it is if you do not have it:- 

www.bbc.co.uk/torchrelay/day60  Click on the Afternoon Crowborough to Hastings, click the play arrow on the picture, open to full screen, then take the time bar along the bottom to my start time of 1.37/38, when Sam runs up to light my torch with the 'kiss', then I am carrying it at 1.39. Very precise! It is a bit blurred in places, and in others there are so many people surrounding me it is difficult to see anything at all! But turn up the volume to hear the cheers!

Photo opportunity before the 'kiss' of flames:

Amelia and me with the Torch!

My little sister Val, so proud!

Natasha holding the Torch with me!

Natash'a mum Marie with me and as yet unlit Torch!

12 yr old Sam lighting my Torch - the 'kiss'

Taken after arriving back at the College:-

Suzanne(+1), me and Philip after the relay

Val, Keith, Me, Alan and Jim after the relay

17JULY 2012 - OLYMPIC TORCH!

17th July 2012: Today is the day I carry the Olympic Torch along Crowborough Hill, Crowborough, Sussex,  from Croft Road junction to the A26.


I hope it goes well, because it has not been a good week since my chemotherapy last Tuesday. The side effects were minimal really, but my persistent cough worsened, developing by yesterday into a chest infection and laryngitis. The gp had to visit me, as well as the nurse at a different time to do my PICC line dressing. I am on antibiotics yet again, and feel a bit better this morning, but have no voice at all - some would say this is a good thing!


I am looking forward to my 'moment to shine', with so many well-wishers, family and friends who will be there to cheer me on. Thanks to everyone for all your unfailing support. YOU deserve the honour too!