Saturday April 2nd 2016

I have started this post about three times and still I really don't quite know how to begin it, without sounding too melodramatic, or serious or depressing.

The facts or how I see the facts could well be a bit different from how the various members of the family see them, but I shall do my best to explain what has been happening over the last few weeks.

I was playing badminton a few weeks ago and in stretching for a low shot felt a sharp pain in my abdomen, not enough to stop me playing but made me aware it hurt a bit.

Two days later I played racquetball and there was some more mild discomfort when I went for a some difficult shots, but once again I didn't really focus on it, other than to think I had pulled a 'tummy muscle'.

Ten days ago I was playing tennis, and once again the pain was there, and suddenly it hit me, this wasn't a 'tummy muscle', Oh how could I be so stupid as not to see that this was another tumour, grown in the site of the partially removed tumour from the last operation in  August 2014.

That was it, my brain was totally scrambled, I was uncomfortable with this now seemingly constant nagging dull pain, and I mentioned to Steve I was going for a blood test, I couldn't hang on until the end of April as I had planned.

He was brilliant, reassuring and as calm as ever, and so I text my fabulous consultant who also said come in whenever and I'll take a look at you, bless her.

 I'll skip over the emotional state I was in as you wouldn't want to read all about that, suffice to say I was not in a good place mentally. Losing my friend CB, ( I talked to her husband on the phone this week and he is being so well looked after by everybody he says he hasn't a minutes peace ) is still in the forefront of my mind. Two other close friends are also in the thick of this rotten disease, and It's just everywhere you look , it seems as though a day can't go by without some mention of wretched cancer.

I went for a blood test on Thursday, and saw KG, she also examined me, we discussed stuff. She said the pain was very near my scar, it could be scar tissue, it could be an intercostal pulled muscle, and that pain can stay with you a long time. If I needed a scan, she would book it .

I came home, and waited for her call, (that's not strictly true, I did Pilates, food shopping, walked the dogs and went to Yoga, and then I waited.....well, you know what I'm like). Early evening she called me, starting the conversation with "I know you'll be disappointed but, and It's the not the news you want to hear but".

My liver, kidneys etc all seem to be fine, my white cells are still low (no surprises there then) but my CA 125 (tumour marker) has gone up from 16 to 28. This is still in the 'normal' range, however I don't need to spell it out.

I have decided to postpone the scan until the next blood test, I don't see the point in having one just yet, if the tumours are still small the scan wont pick them up. I am going back in to have a blood test the end of April and will book one in then for May.

Steve and I are away on Thursday night to the UK to see my family , its AB's belated 70th birthday celebrations, and I am so excited at the thought of seeing my two brothers and sister again after nearly a year. I am also catching up with my UK best friend, so my emotions are running a lot higher than normal ( and as we all know i'm pretty emotional at the best of times.)

I was just going to keep this all quiet and get on with enjoying the weekend, but now I have had a few days to work through it, I thought it best to be up front and put all the rubbish in this blog, and then I can 'forget' about it, maybe....

Thanks once again, especially my Jersey councillor, you know who you are...



Picture Gallery:-

Boasting.... photo in the JEP

 Steve and I last Saturday on the Good Friday Charity walk in St Aubin

 

 Easter Sunday in the Methodist Church hall with my 'daughter-in-laws' ( Ok, so that IS an exaggeration !!)

My boys girlfriends....

 Me and SW, catching up at Coopers....

 My new wellies, much needed piece of kit ..

 My art work

 Bank holiday Monday's walk with my girls

 Beanie and her sister... ( Beanie's the scruffy one on the right)

Jessie, bird watching....

Easter Saturday 26th March

Easter has crept up on me this year, I have failed miserably in my Easter decorations, and that's a pity as I have two large boxes in the loft with Easter paraphernalia, eggs, chicks and rabbits etc. None of which have managed to make an appearance in my kitchen.

I blame the puppy of course, for two reasons, one because she takes up an inordinate amount of my time and two she'd probably 'eat' half the displays I did manage to put out.

I was gone for about four hours the other day, and although Dan was home for some of the time, she obviously got bored and when I did arrive home I found my slipper out in the garden with the heel chewed, (she'd already bitten a hole in the toe end, strangely only the right slipper, the left is as yet untouched.)

My girls on Rozel beach, the plastic has been rolled back from the potatoes on the cotils in the background, can't wait for the first Jersey Royals this year! Jess has the look of "this new 'sister' of mine is STILL here ". Beanie meanwhile nearly always looks full of mischief, and has her eyes firmly glued to the treat in my hand!

Did I tell you AA and I had a lovely afternoon tea at Longueville Manor? A gift from Dan for Mothering Sunday, it really was a treat, and they made sure I had lots of 'dairy free' options .


Visited my friend LT this week, it was good to catch up, albeit briefly, and the same goes for J LeM, ( she said she thought the very slightly underdone Banana cake that I had hurriedly made was just how she liked it- bless her).

Played our last Netball match this week, end of the season now, until Summer training begins the middle of May!

Hope to be playing lots of tennis this year, and on 'rainy' days racquetball and badminton, although trying to get a little syndicate of players interested in Padel tennis, I have played it once but need to properly learn the rules!

The outside pool at the Merton has opened this week, so back to swimming when I can, I know lots of folks are sea swimming, but there is no way I can manage that for at least two months!
There is a story of a friend of mine (who shall remain nameless) who went to the beach recently for a swim, but when she came out couldn't find the bag that contained her clothes, ( I think it had washed away!)fortunately she had stuffed her pants in her coat pocket, so there was only one thing for it.  Walk home wearing just pants and a  tightly done up (short) coat!!

While we are on the subject of stories.....

I was out shopping in the supermarket the other day and bumped into a 'friend', we exchanged pleasantries and then I wished her a Happy Easter and to enjoy Good Friday, telling her I hope she wasn't planning to do any 'work' because she knew what happened to Mr Ecobichon.

In order to retell the story you need to put on a Jersey accent.

Apparently, and this story has been handed down through the generations, there was a certain Mr Ecobichon, who foolishly decided to work on Good Friday, and sadly for him he was "struck down by the hand of God" and died, because as everyone knows, you do NOT work on that very special day.

Well, I had only just begun the story and my friend was creased with laughter , probably at my poor attempt at a Jersey accent, anyway, I carried on with the story and just as I reached the conclusion , a lady who was passing said " Actually, my mother's maiden name was Ecobichon "!

Now, after this tale was told at home, Tom had looked up Ecobichon in the phone directory, as we told him it was a good Jersey name, he found four listed.

I quickly explained/apologised to the lady, and regaled the story to her, hoping that I wasn't digging myself a bigger hole!!! I also hoped she wasn't going to tell me it was her grandfather who was the aforementioned Mr Ecobichon!!

We had a cold fish supper with the family on Friday...

Bex coped very well with her 24 hour ECG, and the unit was delivered back to the hospital, fortunately she hasn't really had any more incidents, and now we wait for the ultrasound scan in May. Not sure if we go to the doctors for the results or wait, either way she uses her varying 'strategies ' if she feels her heart is misbehaving.

March 17th 2016

I'm in tonight, I can catch up with a blog post!

My days ( and nights) seem as busy as ever, but that's a good thing. There is always lots going on in the family unit, including a lovely supper on Mothering Sunday, when we had 13 around the table. At one point all the children (nephew and girlfriends )were bustling around in the kitchen, sorting food out and generally making sure everyone had what they needed, it was lovely to see.

I've been feeling a lot more upbeat about things lately, possibly because the daylight hours are getting longer, more sunshine, less rain, certainly the weather has a lot to do with people's moods. It could also be because I have tried to push the thought of rising blood markers as far away as possible.

March the 12th was a fairly significant date for me, it was the day of my first operation four years ago, and at that point I really didn't think I was going to see the year out. Despite a further op and two long cycles of chemo (never straightforward with me) I'm still here.

Thanks to the surgeons skill and the Jersey Oncology department I have a lot to be thankful for, plus the HUGE support from all my family, friends, acquaintances, and sporting fraternities.

The great big 'wow' moment I've had this week was Tuesday night when at the end of a netball match my team had won, I was voted player of the match by the opposition. I didn't recognise any of their players, so don't think it was a 'sympathy' vote, ( or OAP day) , and I had to check twice in case it was a mistake.
To say I was thrilled was an understatement, my team were awesome so I never expected it, and it has kept me on a high all week!

On the subject of netball it has been lovely to help coach the children of St Martin's school, we had a tournament a couple of weeks ago, very exciting. Despite only winning one of their matches they tried hard in all their games and that's all you can ask of them.

On a different subject if you want to read an excellent blog, ( one of Dan's friends) then check out this link...
http://www.augustinwarner.com/
He is cycling solo from France to China, amazing or just mad? Look at his route planning, and even sign up for the emails...

A few photos:-

Wall display

Fabulous 'Jane James' fish at St Martins school.

Jessie, Raffie and Beanie at the back..

My attempt at spring flowers in a pot, although to be fair, Beanie did help to 'unplant' the bulbs....twice!!!!

Bex is at hospital tomorrow getting fitted with her 24 hour ECG, fortunately she has only had a couple of minor episodes over the last couple of weeks. A further ultrasound is booked for May.

Whilst we are on the subject of hospitals, Steve has his appointment on the 31st March to see the consultant as regards his gallstone, we guess an operation of some sort is the only option. He has been very good on his 'low fat' diet, but I made a huge error in leaving him sausage and mash for supper this week, oh dear. A very uncomfortable night with very little sleep followed, so lesson learnt.

It's the last lent lunch at St Martin's public hall tomorrow 12-2pm, watch out for the one of the waitresses (and I don't mean JP) , as you may end up wearing your soup!!!

March 8th 2016..

This is the last couple of weeks in photos!

Girls night out (badminton girls that is....)

Dog walking with JP, in the wilds of St Ouen

 The earrings on the left are the ones I made at the last RISE support group when we had a lovely lady teaching us jewellery making.

 This is the Yoga teacher who does a weekly class at Macmillan on a Thursday afternoon.

 Met 'Super Gill ' on a very windy day on the beach last week.

Jessie, 'waiting' for naughty Beanie to come back from her latest foray into 'pheasant land'..

 The blur that was Beanie.....

 The beautiful sunrise this morning

 Bex and I went for a hospital appointment this afternoon, although the doctor couldn't be there, we did have quite a long chat with the nurse, who explained all that had happened and was happening to Bex and her heart. They have an ECG that shows the irregularity, and a normal ECG, which is good. She has another appointment next Friday to have a 24 hour ECG. It turns out to be....... Supraventricular tachycardia (SVT) means that from time to time your heart beats very fast for a reason other than exercise, high fever, or stress. For most people who have SVT, the heart still works normally to pump blood through the body.

Types of SVT include:

• Atrioventricular nodal reentrant tachycardia (AVNRT).
• Atrioventricular reciprocating tachycardia (AVRT), including Wolff-Parkinson-White syndrome.

During an episode of SVT, the heart's electrical system doesn't work right, causing the heart to beat very fast. The heart beats at least 100 beats a minute and may reach 300 beats a minute. After treatment or on its own, the heart usually returns to a normal rate of 60 to 100 beats a minute.

SVT may start and end quickly, and you may not have symptoms. SVT becomes a problem when it happens often, lasts a long time, or causes symptoms.

SVT also is called paroxysmal supraventricular tachycardia (PSVT) or paroxysmal atrial tachycardia (PAT).

What causes SVT?

Most episodes of SVT are caused by faulty electrical connections in the heart .

SVT also can be caused by certain medicines. Examples include very high levels of the heart medicine digoxin or the lung medicine theophylline.

Some types of SVT may run in families, such as Wolff-Parkinson-White syndrome. Other types of SVT may be caused by certain health problems, medicines, or surgery.

What are the symptoms?

Some people with SVT have no symptoms. Others may have:

• Palpitations, a feeling that the heart is racing or pounding.
• A pounding pulse.
• A dizzy feeling or may feel lightheaded.

Other symptoms include near-fainting or fainting (syncope), shortness of breath, chest pain, throat tightness, and sweating.

Bex also has another appointment in May, think that's for the ultrasound.

Thanks to everyone for their concern, but now we have a diagnosis , it's a far less anxious time.

A little bit about me:-

I feel ok, and life with children, exercise classes and dogs is a busy one, just the way I like it really. Mostly I feel grateful that four years down the line (March 12th 2012 I had my first operation )I am here and living with Cancer, but I have been a bit more emotional lately. Losing my lovely friend Caroline, seeing other friends waging their own war with the disease, has knocked the stuffing out of me. That, and trying to push the rising blood test markers out of my mind every day is wearing. 

Still, I am lucky to have friends and family I can moan, rant or just talk to, plus the services of Macmillan/hospice. 

I was pleased I went into Macmillan today ( photo shoot for website!) as I bumped into a lady I knew and she told me where I could get reasonable health/travel insurance. Which I am certainly looking into,especially as we go away the beginning of April for a belated birthday celebration!!

That's all for tonight, there is always lots to write, but it's getting late and  I can't string a sentence together let alone write a comprehensive blog post!!

Friday 26th February

The fact I had to correct my spelling of 'February' twice, shows that's it's been another week of highs and lows, ( or that I am an atrocious speller....both actually).

Before I forget, there is a bit of a 'do' at St Martin's Public Hall on Friday the 18th March ( I can spell March) tickets are £8, I think that includes food (light supper) and a quiz. 7pm start, enter a team of up to 5 people. It's all in aid of Macmillan Jersey, and the St Martin's Wednesday group are the fundraisers. Tel 851942 or 851520 if you're interested!

And, there is another Dr Hima Curry night on the 12th March, though this is at St George's School... I'll get more info on that one, or just email me if you're keen.

Now, next subject is Bex, and thank you to everyone for their concern, it has been a very worrying time, not only for us, the parents, but more so for her. Feeling so frightened that she had something majorly wrong with her heart, and being uncomfortable with the symptoms was proving difficult to live with, but by the begining of this week she was just getting back on an even keel.

She had one minor blip on Saturday night, but was ok, until Tuesday evening. We were all sitting around the table having supper, and she had just finished ( no, it wasn't my bad cooking before you ask) when she had an 'attack'. I tried to reassure her, but it shook her up a great deal. After supper I went off to netball and she and her brother had to go to the dress rehearsal at the Young Farmers Club. (Brilliant concert by the way, if you get a chance go and see it.... but don't if you're easily offended !)
I didn't get back in the door until nearly 10:30pm, to be greeted by an ongoing discussion as to whether Bex should go to A and E.... she had been 'not right' all evening. Showered and changed, Steve and I headed back into town.
Once again the care we received at the hospital was superlative, and despite having to wait around (they're always busy), we were seen by Dr 'Rob' who took the time to examine Becky's previous ECG, do another ECG and ultrasound ( on his little portable machine) and give her what he thought was a diagnosis of her condition.
He thinks she has .....

AV nodal reentrant tachycardia (AVNRT), or atrioventricular nodal reentrant tachycardia, is a type of tachycardia (fast rhythm) of the heart. It is a type of supraventricular tachycardia (SVT), meaning that it originates from a location within the heart above the bundle of His. AV nodal reentrant tachycardia is the most common regular supraventricular tachycardia. It is more common in women than men (approximately 75% of cases occur in females). The main symptom is palpitations. Treatment may be with specific physical maneuvers, medication, or, rarely, synchronized cardioversion. Frequent attacks may require radiofrequency ablation, in which the abnormally conducting tissue in the heart is destroyed.

AVNRT occurs when a reentry circuit forms within or just next to the atrioventricular node. The circuit usually involves two anatomical pathways: the fast pathway and the slow pathway, which are both in the right atrium. The slow pathway (which is usually targeted for ablation) is located inferior and slightly posterior to the AV node, often following the anterior margin of the coronary sinus. The fast pathway is usually located just superior and posterior to the AV node. These pathways are formed from tissue that behaves very much like the AV node, and some authors regard them as part of the AV node.

The fast and slow pathways should not be confused with the accessory pathways that give rise to Wolff-Parkinson-White syndrome (WPW syndrome) or atrioventricular reciprocating tachycardia (AVRT). In AVNRT, the fast and slow pathways are located within the right atrium close to or within the AV node and exhibit electrophysiologic properties similar to AV nodal tissue. Accessory pathways that give rise to WPW syndrome and AVRT are located in the atrioventricular valvular rings. They provide a direct connection between the atria and ventricles, and have electrophysiologic properties similar to ventricular myocardium.

So, now that Bex knows what it is (Well, at least a better idea), she is much calmer. He has suggested ways she can 'stop' the racing heart ( blow her nose, (equal the pressure), dip the back of her head in cold water.... and break wind!!! ....at least that suggestion made us all laugh!)

So far she doesn't seem to have had any more incidents, and now that the concert is in full swing there's lots going on to keep her busy. She has a letter for a hospital on March 18th, and another for May 12th, so more answers then hopefully. 

On another note I saw my lovely friend J Le M this week, who is looking good, the hair is starting to grow again, and despite being tired she like me is pleased to see a bit of sunshine and the daffodils growing in the hedgerows. 

Finally, many thanks to the lovely people who made my husband 'low fat cookies' they were delicious !! He felt very honoured and I'm pleased to say he is trying very hard to stick to the 'diet'...he has appointment in March to see about a forthcoming operation, although since largely cutting out fat he has had very little pain. 

Photo gallery....

Lent Lunch

 Trio of Springers....

 Beanie

Jessie

Fun in the woods...

Saturday 20th February

Less of a roller coaster ride of emotions this week, more of a seesaw I think, and thank you for all your kind .word, comments  and hugs (some virtual).

Caroline's funeral was, as funerals go, lovely, and very much a service that she would have wanted. It's true I was a mess, and found it difficult to sing during our Rising Voices piece, but luckily the other members were brilliant and sang their hearts out, she would have been proud.

In other news Beanie ( the puppy) went off to the vet on Tuesday to get spayed, an operation that went very smoothly, and now she has been on house arrest, (not easy). However we went back yesterday and the wound is healing very nicely, so she can have two 20 minute short lead walks a day. ( Not exactly what a springer would call a walk, in cookery terminology more of an "amuse bouche").

Thursday night Bex said she almost woke me up as she was in such discomfort from her heart beating "like it was coming out of my chest". Now, my children know that from a very early age unless the house is on fire or they are physically sick, they don't wake me, so when she came down the next morning  and told me about it, I said it was probably palpitations, everyone has them, and she was probably worried about the forthcoming Young farmers Concert next week.....

She duly went off to work, finishing work a bit earlier she said she'd come with me to take Beanie to the vet, on the way we were discussing how she hadn't felt 'right' all day and thought she would go to the doctors on Saturday morning. Further discussions led to 'do you need an appointment' questions, I said ring now and check. She rang, it was 4:25pm, and then we enquired if they had any appointments that evening, "yes 4:50pm!".

Quick change of plans, she dropped me at the vets and then went off to the doctors. I sorted Beanie out and then walked to Papa's and he gave me a lift home. As we arrived back the phone went and it was Bex who said the doctor suggested she went down to A and E as her heart was a little tachycardic, and had an irregular beat to it. Although as you can imagine Bex didn't quite say it like that, I had to speak to the doctor.
I put the phone down to Bex, saying Papa would drop me off, ( I put some things in a bag as she may have had to stay for a 24 hour observation). Steve walks in, the situation explained to him, he stays to sort the dogs out and off we trot.

Meanwhile unbeknown to us all Daniel had called the same doctor at 5pm and got an appointment at 5:30!! So a very tearful Becky on leaving  the consulting room was greeted with a very surprised brother, who seeing what state she was in, administered the required medicine ( a big hug and reassurance).

We arrived at the local hospital, got seen by a triage nurse within 10 minutes, who after she had put Bex on a monitor for blood pressure and pulse, and could see her pulse was racing at 150 beats a  minute, ushered us through to the resuscitation room. The staff were wonderful, I couldn't praise them enough, they gave her just the right amount of respect, reassurance and assistance as they possibly could, all with a little relaxing humour to ease what was otherwise a fairly stressful situation.

Bex was wired up to an ECG monitor and also ( brave girl) had a cannula fitted ( I fully understood that one), and then lots of questions. We waited while a few graphs were taken and then with her heart still going crazy was offered a beta blocker to calm things down. This took it from 125+ to a more normal level of between 80-90. Talk of her electrolytes in her blood being out of kilter were offered as possible explanations ( ie low in potassium or magnesium ). However all her bloods came back as normal. She had a thyroid test too, but we won't know the result for three days or so.

Two hours later we were walking back out of the hospital and driving home, exhausted, calmer, but still none the wiser. She is hopefully to have an ultrasound scan this week to see how the heart is working, and to get the thyroid results, until then she just carries on "as normal".

We are all feeling a little tired today, ( I did sleep in her bed last night as she was still anxious in case it should come back ). It's been a bit of a week.

On a separate note, I did have a lovely evening with VM, KH and SS, where we ate delicious food and had some serious (and not so serious discussions!!)

I played some great games of racquetball, tennis and badminton with good friends, and tonight look forward to a 60th birthday party....

Im ending this post with a piece taken from Caroline's Order of Service:-

'Remember Me'
Do not shed tears when I have gone but smile instead because I have lived. 
Do not shut your eyes and pray to God that I'll come back but open your eyes and see all that I have left behind. 
I know your heart will be empty because you cannot see me but still I want you to be full of the love we shared. 
You can turn your back on tomorrow and live only for yesterday or you can be happy for tomorrow because of what happened between us yesterday. 
You can remember me and grieve that I have gone or you can cherish my memory and let it live on. 
You can cry and lose yourself, become distraught and turn your back on the world or you can do what I want - smile, wipe away the tears, learn to love again and go on.

David Harkins

Sunday 14th February

Happy Valentines day.

I have been trying to update my blog all week, but I am finding it difficult to write exactly what I want to say, without it seeming too sad.

We have Caroline's funeral tomorrow afternoon, where her choir ( Steve and I included) are singing one of her favourite songs, one of the first pieces we ever sang. "Let there be Peace". I hope we manage to sing it all the way through and reasonably well. Fortunately I have asked my sister-in-law to conduct us, so it should help us to have a focus.

It's fair to say that I have been a bit shaky and emotional over these last few weeks, losing Caroline has had a big impact on me, but I don't want the whole post to be too sombre.

I have had so many offers of help, from playing a sport, having a cup of tea/walk/chat,  and that's not mentioning the lovely acquaintance ( an old netball/tennis) friend, who has me in her prayer book and was genuinely pleased to bump into me in the supermarket. I have had friends send emails, Macmillan and my consultant checking up on me, my family offering spontaneous hugs, in truth it really is very humbling to feel the enormous amount of love and concern that I have been shown.

So, I just want to say that I appreciate every single one of you, and I am truly blessed to have had my life enriched by my family ( here and all you lot in the UK) and so many friends. I do feel so 'lucky', and although It's been very hard to keep a positive outlook on my own situation the huge and varied support has helped a great deal.

THANK YOU 

XXXX


I'm just going to finish with a few photos taken from last week when hubby and I spent two days in London.....