Off to London again tomorrow, this time for a clinic appointment. Hope to have lots of information on the forthcoming radiotherapy , dates , times etc.
Brother gone back and aunt has arrived - already amassing plenty of photos !
Wondering if I have time to fit in a sea swim before the 7:30am airport run (!) otherwise it may have to be 9 pm !!!
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Monday 29 August 2016
Wednesday 24 August 2016
Wednesday 24th August
Starting off this post with a few photos of my crazy little bro and JW ( soon to be JN!!)
(Huge thanks to SW for collecting them from the airport, and to AH for making us a rather special fish supper- it meant I could get a third sea swim in !)
So, now to make sense of the yesterdays hospital appointment.
On the whole it's good news, ( if you take into account the fact I have a cancerous tumour growing as "good news"). The PET scan showed that the rest of me seemed to be clear, and the only tumour was the one that they had had only partially removed in 2014's operation.
The general consensus was to press ahead with radiotherapy, every weekday for five weeks at the Marsden.
I have not particularly looked at radiotherapy in great detail, thought I'd cross that bridge as and when, so I do have lots of questions that need asking, KG is looking to get me back to the Marsden next Tuesday ( their clinic day), in order to have the pre assessment chat.
We have a wedding in Cornwall on the 3rd September, and then a week in France on the 16th... so my plan would be not to start anything until the 26th. KG doesn't think a few weeks will make a lot of difference anyway.
Unsurprisingly my CA125 has risen again to 81, but the rest of the liver/kidney functions seem fine.
As I type these words it all seems a little surreal, the last few days I've enjoyed aqua aerobics, sea swims, racquetball (thanks AB) and badminton (all in one day) and yesterday was fortunate enough to sea swim three times, fit in a yoga class, and have a cracking netball training session in the evening. So talking about treatments and hospitals etc feels very bizarre given my current 'healthy' state. Mind you I'm not complaining, it certainly does a lot for my mental(!) health to be busy and active, and I'm sure being as fit as I can will help me in the long run.
Thanks again to all the positive support our family receive on a daily basis, very humbling .
Thursday 18 August 2016
Royal Marsden
Sitting on the Gatwick express heading for the airport.... Thought I'd have oodles of time to at least formulate the semblance of a blog post, but we had barely sat down in the waiting room before I was called through ... Mind you, it takes concentration to listen for a "Barbara Lucy" name... Especially as the people called before me I would never even been able to pronounce , let alone shout out.
We left home at 7:30am with lots of " good luck" texts/ messages and emails still ringing in my ears and prayed that the fog that was lingering over the west of the island would quickly disperse.
Our plane managed to land in Jersey ok thank goodness though our flight was only delayed by twenty minutes, but this was made up during the flight. Train tickets bought , one stop on the tube, a brisk walk ( is there any other?) and straight into the Marsden, exactly on time- phew.
I was taken into the "radiation" room, asked questions about allergies, drugs , etc, pumped full of ( a trace!) radioactive substance , told not to hang around pregnant women or small children under 5 for the rest of the day, and then left for an hour!
An uncomfortable 30 minutes lying very, very still with my arms over my head, going in and out of a couple of large whirling polo mints and it was all over, the young man told me I had passed. Not of course with distinction but a pass is a pass, as I'm sure lots of young students on A'level results day will be pleased to see.
Steve led me outside to sit on a bench and eat - having not had anything since the night before and it now being 1:45pm, I was in need of nourishment.
Poor Steve, bless him, he thought that there was a possibility that we would get some results today ( I had a joke with my KG that shame they couldn't see me after and plot the next course of action) , but I saw nobody in he consultant capacity today, just young trained nurses doing their important jobs with some very sick people.
A debate followed between us as to what we do for the rest of the day, and walking in the parks, ( away from the shops) and being a tourist seemed like a good option. Luckily for us it was warm but not really sunny, ( otherwise I would have been sad to miss my sea swims!- aren't I lucky ) .
We sought solace, ( and coolness ) in St Martin's in the field Church, where there was not only welcome refreshment but also a very talented orchestra rehearsing for their performance that evening.
So, to bring everyone fully up to date I know already that I have a wretched cancerous tumour growing , so that is going to be very evident on the scan, the question is are there any others? .
If it's only in one place then 'maybe' I can have some radiotherapy to zap it.. If there's a few "hotspots" I don't know what they'll suggest .
I have a hospital appointment on Tuesday next week ( 23rd) and I need a blood test before, KG is trying to get me included on the MDT meeting that morning, so fingers crossed I get results and can move forward.
I'm having a lovely week with my bro and JW, and it's been good to keep busy, ( well, I'm busy he just seems to be lying around sleeping, nothing new there....)
Taking one day at a time, feeling grateful for what I have got , and as always I'll KBO.....
A HUGE thanks to all you readers out there...
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We left home at 7:30am with lots of " good luck" texts/ messages and emails still ringing in my ears and prayed that the fog that was lingering over the west of the island would quickly disperse.
Our plane managed to land in Jersey ok thank goodness though our flight was only delayed by twenty minutes, but this was made up during the flight. Train tickets bought , one stop on the tube, a brisk walk ( is there any other?) and straight into the Marsden, exactly on time- phew.
I was taken into the "radiation" room, asked questions about allergies, drugs , etc, pumped full of ( a trace!) radioactive substance , told not to hang around pregnant women or small children under 5 for the rest of the day, and then left for an hour!
An uncomfortable 30 minutes lying very, very still with my arms over my head, going in and out of a couple of large whirling polo mints and it was all over, the young man told me I had passed. Not of course with distinction but a pass is a pass, as I'm sure lots of young students on A'level results day will be pleased to see.
Steve led me outside to sit on a bench and eat - having not had anything since the night before and it now being 1:45pm, I was in need of nourishment.
Poor Steve, bless him, he thought that there was a possibility that we would get some results today ( I had a joke with my KG that shame they couldn't see me after and plot the next course of action) , but I saw nobody in he consultant capacity today, just young trained nurses doing their important jobs with some very sick people.
A debate followed between us as to what we do for the rest of the day, and walking in the parks, ( away from the shops) and being a tourist seemed like a good option. Luckily for us it was warm but not really sunny, ( otherwise I would have been sad to miss my sea swims!- aren't I lucky ) .
We sought solace, ( and coolness ) in St Martin's in the field Church, where there was not only welcome refreshment but also a very talented orchestra rehearsing for their performance that evening.
So, to bring everyone fully up to date I know already that I have a wretched cancerous tumour growing , so that is going to be very evident on the scan, the question is are there any others? .
If it's only in one place then 'maybe' I can have some radiotherapy to zap it.. If there's a few "hotspots" I don't know what they'll suggest .
I have a hospital appointment on Tuesday next week ( 23rd) and I need a blood test before, KG is trying to get me included on the MDT meeting that morning, so fingers crossed I get results and can move forward.
I'm having a lovely week with my bro and JW, and it's been good to keep busy, ( well, I'm busy he just seems to be lying around sleeping, nothing new there....)
Taking one day at a time, feeling grateful for what I have got , and as always I'll KBO.....
A HUGE thanks to all you readers out there...
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Wednesday 10 August 2016
Wednesday 10th August
Just to update information from last weeks posting... I did finally receive a letter from the Marsden on Monday , for an appointment at 9am on the 17th.
Tuesday morning I called the hospital and inquired as to whether there was a chance to have a slightly later time so I wouldn't have to go over the night before ( I did explain a bit more ) .
The lady was extremely helpful and after a discussion she swopped me a Wednesday appointment to a Thursday one at 11:45am ( 18th) .
Much easier to get a flight out at 9 am and return the same day, slightly less stressful.
Small problem in its actually Gorey Fete and we had an invite to lunch that day, but it can't be helped.
Steve is insisting coming with me, he's says I'll be too dopey to manage on my own ( other folk do I'm sure, but I'll be pleased of the support.) Not drinking or eating anything for 6 hours before will be difficult enough, and I know that the procedure takes at least two hours.
Once again , it's not so much the scan, it'll be the results, my consultant is going to suggest I am given the results straight away, and then they can decided the next course of action.
My best scenario is for the tumour to be slow growing and only found in one area, and then I guess they may suggest radiotherapy .
It's just pants .
I'm feeling ok, and I've been told I look ok too (!) This makes it so hard to know that this is happening and all beyond my control .
Most of the day I stick my head In the sand and ignore it, grateful for days like today when I've played racquetball ( thanks CJ) played tennis ( thanks AH FP and CH) and played badminton with the boys tonight . In between I've had a sea swim, and visited Macmillan for some reiki .
No dog walks today but had to have a trip to the vet with Beanie as she has had a sore eye for a few days. We went on Monday , and was given cream and drops etc , told to come back today . She then had to be taken in, sedated and they removed a small hard grass seed from her third eyelid. She now has to wear a 'collar' and is on ' light duties' only.
This is one sad dog... But can I say she only has herself to blame- if she didn't go tearing off chasing things in dense undergrowth ( typical springer behaviour ) she probably wouldn't be in the state she's in now.
Whilst she's sedated and sleepy it's ok, but I can see the next couple of days being challenging.
I have been thinking of my friends friends up in Scotland , missing seeing them on the beach this year, and wishing them all the best.
I've got lots happening over the next few weeks to keep me busy, my younger , weaker, and athletically challenged brother is coming ( with JW , his fiancé , soon to be JN! ) on Saturday for a week.
I have a few activities lined up , and of course on Thursday he'll have to do dog duties before he sneaks off down to Gorey fete to drink beer.
Three days after he's gone back I've got my older ( weighty, balding and also unable to beat me at racquetball / badminton .. I've let him off tennis and golf ) and my sister in law coming for four days, and they are followed by my mad /crazy/loveable/ kind and funny aunt.
Then we go to Cornwall for a wedding :-)
My sister meanwhile is busy entertaining her grandchildren , and revelling in the delights of the cold North Sea , plus other "northern" attractions .
Bex kindly put a little video clip together of me in a typical day called " a day in the life' for Sally to share with her friends, and all those folks over there whom I've never met but who think/ pray for me on a regular basis.
My good friend once told me of a fisherman's prayer .
"God, please help me, the sea is so big and my boat is so small"
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Sunday 7 August 2016
Sunday 7th August 2016
I've learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.
Maya Angelou
Ten days since my last post, and I still haven't heard anything officially from the Marsden.
I did finally call them on Thursday and had a short chat with the 'appointments' lady, who told me (once I had given her my ref number ) that I was booked in for the PET scan on the 17th August.
I really hoped that the letter would have come through on Friday, then I could have got on with flight booking, but no joy, and we don't have post deliveries on Saturday, I sincerely hope it arrives tomorrow.
It being a birthday week last week , its been a little bit emotional, and I have a continuing minor throat irritation, whether that's due to being a bit stressed or i'm fighting off an infection I don't know, but its a nuisance just the same.
Left in charge of the girls while I go swimming!
Tecumseh
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