Getting back up to speed!

Sorry about the break in news in the last few days. Back now with a couple of photos taken this afternoon on a short walk around 'The Bury' in Odiham.
The stance is a bit odd in both but anyway, the first location speaks for itself and the second is the old 'pest house'...apparently one of only five left in the country... pest is the old English word for plague (no prizes for guessing from which language it stems.... French and Latin before that!)... so it was used to house and separate people with the plague or other infectious diseases from the local community.... for fourty days (again as in France and hence the word 'quarantaine'........ interesting, non ?!!!!!!)


Apart from the arms, this pose strikes me as similar to the statue in Brussels of the little boy peeing (Manneken Pis)! For the record, I wasn't!

On the medical front, we returned to the Marsden yesterday for my first check-up..... everything's A-OK seemingly and they don't need me back again for two and a half weeks.... good news.... So now I can concentrate on putting a few kilos back on......!

Bye for now and....... especially to Louise, Happy Belated Birthday!!!! Hope it was a goodun!!!

Happy to be Home!

And you can guess that's an understatement! Very happy to be back... my hospital stay did seem to last forever, even though it could have been much longer, but since being out of hospital for 24 hours, I feel as though I'm progressing by leaps and bounds..... No sickness for over 30 hours... big breakfast...nice, long shower... up and at 'em by 11am (a record for recent times!)...big lunch...Cadbury's chocolate buttons... it's just heavenly! And here's the proof that I feel that good....

N.B. JoJo, regardes le petit tableau au-dessus de ma tete !...

In fact, I felt so good, we even took a (very) short walk this afternoon ... maybe 100 metres (!) to breathe in some real fresh, versus filtered, air!

So, although I have yet to look at what has been going on on the blog in my absence, a really big, heartfelt thanks to everyone who has left messages... they really do give me a great boost.... BUT equally to those of you who have tried but been defeated by blog technology (and there are apparently more than just one or two of you... it defeated me too, but that's not hard)!

Anyway, I hope to get to read all messages tomorrow and we'll keep this thing going a while I guess.... because you seem to like it!

Thanks again xoxoxoxoxo

Home!

..... Safely home!.... pleased to be out? ..... you bet!

But tired too... and not up to facing the camera..... so an early night ..... and I'm sure she'll be up to writing to you all tomorrow....

Day Sixteen

No .... not out yet! ... She has a pain in her leg ... and the doctor decided that he'd like to be sure there isn't an underlying problem .... by having a CT scan done.... as he said " I'm pretty sure there's nothing there .... but although I'm a doctor ... I've been wrong before... it's better to be safe than sorry" .... which I guess is true.... it was just disappointing that they didn't get the scan done today.... so although she's a bit fed up about it.... it's probably the best thing to do.

(It could of course just be that she's too popular amongst the prof, doctors and nurses....... )



They've already prepared the bag of medicine to bring home..... so I'm sure she will leave tomorrow......

Day Fifteen

Well ..... today Jules is about as happy as furry boy here!..... and thats because they are letting her out tomorrow.......

.... providing everything stays as it has today..... her white cell count now 5.8.... the prof has seen her today... his comment to her when he was told her cell count was "well what are you doing in my hospital? .... you should be at home!" ..... She's had a meeting with the Specialist Nurse about the do's and dont's at home ... I'm pretty sure Jules will be very tired, with low energy for a few weeks at first.... but given the way she's responded to pretty much every bit of treatment she's had .... she may recover more quickly than they expect.....

Thankyou all for your support, messages and good wishes .... tomorrow I hope to post a picture of her "on the outside"!

Day Fourteen

Cell counts continue to improve.... now up to 4.5.... and just waiting to finish the course of antibiotics..... then they will just keep her in to monitor that everythings fine for 24 hours ... and then its home!!!

The registrar today has told us that she will feel pretty tired ... just like today.... for a little while but that she should feel just like her old self in about two months .... So I know shes hoping that they will let her out by Tuesday..... Its not long now!

Day Thirteen

Unlucky for some maybe.... but not Jules! Her white cell count has increased to 3.5 ... and everything else "on the up" ....

Today she ventured out of the ward ... for the first time in 13 days .... and we went down to the Cafeteria in the main entrance to the Marsden .... just for some people watching ... and a change of scene....

Later back in the ward Jules asked me to call the nurse ... and so .... for some reason ,without really thinking.... I pressed what I thought was a call button.... hmmmm .... well a buzzer started going and then nurses started running in from everywhere .... seems I managed to press the emergency call button, and they thought Jules was having a cardiac arrest.... that livened up the day a bit....

The consultant was around today and thinks that Jules will probably be able to leave the hospital on Monday or Tuesday..... provided everything continues to improve as it has for the last two days..... Im sure it will!

Day Twelve

Well! .... What an improvement today.... cell count up to 1.5... ( remember anything above 5 is normal).... all other counts improving.... when I got to the hospital she was lying in bed listening to her i-pod, feet tapping away ..... having just had fish and chips for lunch! Temperature still normal.... and importantly... her sense of humour back.

So to pass the time we played scrabble .... who won? .... wandered up and down the ward... (she hasnt been out of the room for nearly four days)... chatted with the nurses and the on duty doctor..... they all seem pretty pleased with the way its gone.... getting back to normality...

She may not thank me too much for this photo.... but I just wanted to reassure you all that she looks fine... and feels so much better.... and I'm sure she'll be home soon.... and can get in touch with you all personally....

Its Friday..... have a drink to Jules health and recovery!

Day Eleven

Well by midnight last night Jules temperature had returned to normal.... and thats they way it has stayed all day .... Her white cell count is now 0.3 ... so thats heading in the right direction ... and then during this afternoon they gave her some platelets and blood by transfusion ..... thats not a cause for concern... they had said to me two days ago that that was in all probability what they would do.... it just speeds up the process of her achieving "normal" levels in her blood.

So by this afternoon she was a lot more cheery.... had a massage for the second day running! ... the nausea has reduced quite a lot... and had a cup of tea ... and put an order in for breakfast ..

So a big improvement on yesterday.... and if the improvement curve is an exponential one .... then she should feel even better tomorrow! .... Thanks to everyone for their good wishes, thoughts and messages of support.....

Day Ten

Well Jules is a "model" patient according to the senior nurse .... and by that she means that she has gone through all the symptoms associated with the stem cell transplant! ... So today she was feeling just the slightest bit better... less sleepy ... but has developed a temperature ... they immediately gave her antibiotics, and then whisked her off for a chest x-ray... to make sure she doesn't have a chest infection. ( No signs of one apparently.) They will now keep her on the antibiotics for at least the next 24hours.... and monitor her closely.

On a positive note her white cell count has now risen.... to 0.1... so slowly it will head back up. The mouth ulcers they thought would develop have not appeared, and I guess this is due to the stuff they gave her when they first saw signs of them.

How long will she be like this?.... apparently... she may well still feel pretty bad tomorrow, and maybe into Friday, the worst side effects last for up to four days ..... and so with luck she will begin to feel better from Friday......

Here's hoping....

Day Nine

Well you can't get much lower than zero! ... and today Jules white cell count was there first thing this morning. Its true to say that she doesn't feel that great.... and has spent a lot of time sleeping (which is good!) ... but as far as the nursing staff and the prof ( everyone calls him that!) are concerned she's doing really well. Her temperature, blood pressure and heartbeat are all completely normal .... all she has to do is avoid an infection!


They expect that her white cell count will stay at zero probably into tomorrow... but soon will pick up.... and she should begin to feel a bit better from Thursday ... and apparently ... this could not have gone much better than it has.... I'm sure thats the case because I've already had a conversation with the prof about her release dates ....

So hopefully today was the bottom of the curve ... all those positive vibes do have an effect .... Keep it going everyone!

Day Eight

A much better day! ... even though Jules white cell count was 0.1 first thing this morning .... and fast heading towards zero. Her nausea has subsided and she has been eating and drinking today ... and as you can see up and about .... and doing a crossword ...

The other visitor today was Professor Morgan ...who's pretty impressed at the way she has handled the whole thing.... he has explained that she will still remain at risk of infection until friday.... but on a reducing basis ... he said its 50:50 whether she will have a high temperature during this time.... so its fingers crossed time again! .... but not for much longer! So her own natural immunity will rebuild from now ......

So.... just about round the final mark .... and then the homeward leg .... thanks for all your messages .... and positive thoughts .... X

Day Seven

If I said that today Jules isn't feeling that great; then it would sound as if she's making no progress .... and in fact is going backwards..... Well it is true that today she probably feels about as good as Thursday ... the nausea has returned and she feels tired and has lost her appetite. So on the face of it you might be disappointed.... However the reason she feels worse is simply that her white cell count is now down to 0.6 ( when 5.0 or below is abnormal) .... and so her bodies immune system is extremely low...... but she still has a normal temerature and blood pressure ... which is really good news. Thats because tomorrow her white cell count will fall to 0.0 zero! .... and from there .... the only way is up.... because the new stem cells will start doing their job and rebuild her immunity.
As her nurse said to us ... to have got this far without an infection or high tempertature is fantastic ... tomorrow is the bottom of the curve in terms of feeling bad.... and so from Day nine she should start to feel better.....

So..... still keeping 'em crossed .... keep them positive waves heading over to the Marsden ... get through tomorrow .... X

Day Six

Well it was pretty cold this morning.... -3 in the woods round the corner from our house ... too cold even for the wild horses that are usually to be seen ... waiting to be fed.





Pretty cold too in the garden at home....

So it wasn't too much of a surprise that when I got to the Marsden that Jules was tucked up in bed...... because it was too cold she said.....

Anyway she is gradually feeling bettter and the nausea and sickness have subsided consiserably ... she even spent a few minutes on an exercise bike .... and we played a few games of scrabble and draughts in the patients sitting room.... for a change of scene.

The nurses are still concerned about the risk of infection, and they are sure that she will develop mouth ulcers over the next couple of days as they checked her mouth and can see them coming.... and so they've already started with the preventative stuff .... I know that Jules real worry was a return of something like the chest infection she had in Nimes ..... and so I guess; if this is as bad as it gets ..... then its manageable.... and she'll cope.... Im sure!

.... and if she gets really bored they have topical fish in the patients sitting room .... quite unusual I thought.... but relaxing too ......

Its Saturday.... raise a glass to Jules health everyone!

Day Five

Well .... this is the ward Jules is on .... and you can just see her at the nurses station ..... it looks much bigger in the photo than it actually is ..... and today for some exercise we were walking up and down... for a change of scene.
So you will gather that today she feels a lot better than Wednesday and Thursday ... and she has been eating and drinking, and the saline drip has gone.... so improvement all round.
She was also visited by Professor Morgan, her consultant; today.... and he's happy with her progress too .... so thats a bonus!
Jules nurse.... Bryony ... has explained that her white cell count is around its lowest today and tomorrow, and that she must be careful... they are concerned that she should pick up an infection... so the next few days are critical......
Because if she doesn't then that will mean she will be home much sooner.... !!
Keep 'em crossed!

Day Four

Well.... not a lot has changed today.... unfortunately the nausea and sickness Jules had yesterday has continued into today.... its doesn't seem any worse .... or any better for that matter. So they have put her on a saline drip (to make sure she has enough fluids).... and changed the anti nausea drug for a different one early this afternoon.... this had two effects; she quickly said she felt a lot better... and then said she felt sleepy ..... so when the senior nurse came back to see how she was getting on she explained that sleepiness was a side effect of that particular drug. She also said that she thought that this was probably about as bad as the nausea should get .... and that what they were looking out for now was signs of infection.
It seems that no two people respond in the same way with this disease..... and so they have to take a lot of care with each patient.... and I can see that they are taking good care of her .... I couldn't see how they could do more.
So later on Jules said that she was happier... and that she'd much rather feel sleepy than nauseous .... and then into doormouse mode!

Day Three

Well this is the main entrance to the hospital .... and also the view from Jules bed! ....So if staring out of the window .... and getting lost in a far away place is your thing .... (and you're unlucky enough to be in hospital!) ... then this view is probably the best in the hospital. Its actually south facing and has been sunny for the last two days .... ( and you can still see the remnants of yesterdays snow fall!).....and theres always lots of comings and goings to take your mind off things!... (although I seem to have missed it all in the photo)

So today is day three, and some of the symptoms the nurses talked about have started to appear..... not in a major way .... some nausea and sickness .... but enough to take the edge off your sense of humour! .... she is still smiling .... and still optimistic .....
As you can see there are no drips... and the canula has gone as well .... so its just now a case of waiting for the "all clear" .... which I guess is a little way off yet.....

And so in the meantime ..... at least theres a decent view ......

Day Two

Well.... 24hrs after the Melphalan; at 5 o'clock (pm)Jules had her stem cells put back into her bloodstream. I'm not quite sure what we were expecting, but this was done simply by injection into the canula in her arm .... the whole thing took five minutes! ... and so it was in a way an anti climax .... and in another really good to see that it involved no pain at all .... the only side effect being that she smells quite strongly of sweetcorn ..... just like someone can after eating garlic!( this apparently is caused by the fluid the stem cells are stored in!)

So.... right now she still feels completely fit and healthy.... and hopefully this continues ..... Touch wood!

Monday January 5th ..... Day One

We got to the Marsden fairly early this morning and everyone seemed very.... "just getting back into the swing of it" mode.

So after a short wait she was shown to her room, And as we had expected it was a four bed unit. However there is only one other female patient in with her. ( Who also has the same myeloma.) ....The room is also quadruple glazed .... (if thats the right description of two sets of double glazed windows?)..... and not only is the air supply temperature controlled it is also purified as well. All the beds have their own TV and Radio, and there is a PC with internet access as well. ( Annoyingly slow apparently!)

So the first thing that happened was that we were both offered tea and coffee!.... which was a bit of a surprise...., and then Jules was given her menu for lunch and dinner! Well .... the menu choice was pretty impressive... three courses with four or five different choices at each course .... and if the patients don't fancy that..... then there is another menu that is run on the ward all day that has another selection ..... ( I'm sure I've stayed in worse hotels!)....

The medical stuff started after lunch with the normal blood pressure, weight taking and personal detail stuff. Later on they put a canula in her arm ... ( this is good news as some of you may know she picked up an MRSA infection in Nimes from their insertion of a Portacat or Hickman Line) ...
and was a bit worried about it being done again.

At the time of my leaving they were just about to start the chemo .... ( this is called Melphalan ...(and would be the same drug used in France .... in fact pretty much everywhere across Europe as far as we could tell ....) this is the first step in the stem cell transplant process .... ( For a good explanation of the transplant process I would recommend the MyelomaUK website.)

So Jules has been told that her immune system will be at its weakest from day 5 to day10, and that it is likely that she will pick up some infection during that period. In that case they will move her into an isolation room to protect her, and where they will in all probability give her high dose antibiotics. From day 10 her bodies own natural resistance should rebuild (from the transplanted stem cells) .... and that they would look to discharge her at any time after they can see from her cell counts that everything is working okay.... They have suggested that this might be anything from two to four weeks from today.

So she.... and Im sure everone, hopes that... when you consider how she has responded to her treatment in both France and England .... both in terms of the actual results.... as well as the lack of side effects she had been told to expect under those treatments... that this continues......and so she will be "let out" sooner.... rather than later!


I know that she is knocked out with the positive messages, and words of support and kindness that she has received from everyone..... it really does make a difference! .... Thankyou all .... X

Walking by the Canal

Well Saturday was sunny, but very cold..... as you can see from the frozen canal.... but we decided to brave the elements and explore around Crookham..... As you can see from the next shot the locals are still anticipating a WW2 German invasion, with this old "pill box" .....

..... And apparently they used to string barbed wire between these two bollards to deter amphibious landing craft on their way up the canal! .....

The ice on the canal was pretty thick.... but we weren't brave enough to try skating......

And further on ... if you look past the bridge you can see more of the bollards .......

.... and rather than walk back the way we had come, we decided to take the path across the frozen fields .... which was well signposted.... although you might not think so to look at it .........

And it was getting colder ..... and darker .....

..... and the moon was out as we neared the end of our walk....

And, if you believe in good fortune..... it was just in the middle of nowhere that a black cat came running down the track and found me and spent a good while crossing... and recrossing... my path ... and so, as tomorrow is my "big day" back at the Marsden, it just seemed to be a good omen .... I certainly hope so anyway!!!

I go in early tomorrow..... so fingers crossed !!!!

Happy New Year Everyone!

Well.... at the last minute we decided to head off and do something a little different to celebrate the new year..... and in a Grand place too! .... in Brighton.


Heres the seafront with the Palace Pier in the background......

And this is me in the bar!

Just look at that staircase!

And so after the new year celebration ..... and a pretty late start to the day .... we went for a walk to the beach in a place called Cuckmere Haven .... which I've often seen from the air when I fly into Southampton.....

..... and thats because at the end is the chalk cliffs known as the "seven sisters" and Beachy Head, easily spotted from the air......

And on the drive back to Brighton we came upon this chalk hill carving..... which is apparently known as the "Long Man of Wilmington" ..... (you'll need to zoom in on him to see him properly)

So we packed quite a lot in in the two days .... It was absolutely lovely. I certainly hope you all enjoyed the end of the year as much as we did and that 2009 turns out to be full of good things for you.... good health, laughter and good humour.... and a bit of wealth too maybe! Happy New Year !!!!