Visit to the Met Office

On Wednesday afternoon my hubby and I went on an outing with our local Ileostomy Association to the Met Office in Exeter. The Met Office, responsible primarily for weather forecasting, has moved several times, and moved to Exeter a few years ago, where it is most likely to remain. The building is very modern, and striking in appearance.

The tour started with a session in the lecture theatre, where we were shown a Powerpoint presentation giving the history of the organisation.

After the presentation, we were split into four groups and taken round by different guides. We had to be aware that people were still at work, and to keep the noise down, and make room for people moving to and fro.

Our guide described how previously, the Met Office was housed in typical government buildings with corridors and rooms isolated from each other, but this new building was constructed with a view to freer communication between different departments, with plenty of open space with tables and chairs to sit and chat and discuss matters across different disciplines.

Not only is the layout conducive to good communication, but the building has a light, spacious feel to it and we were told it was a very pleasant environment in which to work. Scattered around were various commissioned works of art by contemporary artists in many media and these added to the generally very aesthetically pleasing surroundings.

A huge amount of research goes on, analysing data coming in from around the world and via satellite and radar telemetry. Most of the staff have several university degrees in many disciplines - there are physicists, mathematicians, statisticians, engineers - you name it. The coffee shop is a key element because our guide said that you can ask people by phone, email, text, etc., to meet with you to discuss something and they won't come, but offer to buy them coffee, and they come like a shot! There is a restaurant, and vending machines throughout the building as they run shifts 24 hours a day. Everywhere there are recycling bins - it's all pretty environmentally conscious! They even have a gym to maintain good health among the staff. They have a large library and this is open to the public - in the library is a display of historical instruments, and I was fascinated to see an Admiral Fitzroy barometer - my parents used to have one so it was very familiar to me.

We were shown some very interesting items such as a model of the aircraft they use for measuring different things in the upper atmosphere, a model satellite, and some very interesting free-floating buoys which can be programmed to rise and fall to different depths in various oceanic currents, all the time monitoring pressure, temperature, salinity, speed etc. There is a label on the side stating it is the property of the Met Office and "Do Not Retrieve!" These oceanic currents are part of the engine that drives the global climate. A great deal of research is being done on climate change, collating data from around the world, and looking at ice cores, atmospheric dust etc. They were at the forefront of the decision to stop all flights after the volcano erupted in Iceland a few years ago, measuring the levels of dust in the atmosphere. They monitor droughts and floods and try to predict when these things might happen, and try to help communities in the Third World which are particularly vulnerable to these events.

He explained about the duplication of a lot of the equipment in case of failure, and details of how much electrical power is required to run the supercomputer, and how it is water cooled - I wish I could remember all the facts and figures! The water heated during this cooling process is used to heat the building, and any excess is used to generate electricity to be ploughed back into their system. They have their own power plant and back-up generators, and several hundred solar panels, and they don't waste any energy.

Someone said to me recently that since the Met Office moved down here, the local forecast seems to have got less accurate lol! She said she felt like phoning them up and saying, "Just look out of the window!!" I don't actually think they do too badly these days - it's a lot more accurate than it used to be, and our guide showed us some charts while we were still in the conference room, showing how the accuracy of the predictions several years ago for one or two days ahead, is now what can be expected for 5 or 6 days ahead. The supercomputer is making over 1,000 trillion calculations every second.

I asked our guide about the average age of the employees, because they all seemed to be very young. He said that the average age had dropped from about 35 to early- to mid-twenties. Being a government department the pay isn't that brilliant, and young graduates are happy to put up with this for the benefit of gaining experience, using their expertise, getting papers published, having something good on their CV etc. Being mostly single, they manage fine on their salaries, but once they start to settle down and get married and have families, they tend to move to better paid pastures new. He says there is quite a gap between these young employees and the ones like himself who have been long-term employees for 30+ years and this is proving to be quite a problem. They need the experience but people are not staying more than a few years.

The final stop was at the library, and then we all met up again in the lobby before coming home. The whole visit took about 2 hours. It was all very interesting, and I hadn't realised just how much they do and how important the work is - it's not just so that we can decide whether to take an umbrella to work that day, or whether to hang the washing out or not!!

Other News

After all the recent activity, yesterday I was extremely tired so didn’t push myself at all, but got up late, and spent most of the day resting on the recliner. Even if I feel I am wasting time and being lazy when I get a day like this (which is not true – after 9 years of M.E. I should learn not to be so hard on myself!!) it is well worth it, because the next day I really feel the benefit of it. Today I am feeling a lot better, and able to tackle the laundry and various other tasks.

Yesterday was the first day since I took up my guitar again at the end of February, that I did not do any practising. Being so tired, I gave myself a day off! I played and sang again this morning, though, and am pleased to say that I am making progress and my fingers are definitely not as sore as they were. I noticed this morning that the calluses are forming very well, and no longer look like deep white blisters, but have turned brown!

They are getting sufficiently hard that hammer-ons are now becoming more audible! My fingers are still sore, and the percussive impact on my computer keyboard still hurts, but this will pass as the calluses develop further. The only way is to keep at it!

During the tour of the Met Office I thought I was beginning to develop a cold, which I really dreaded. With my M.E. a cold usually degenerates into a more severe viral infection causing me to feel flu-y and feverish, and I often get a throat infection and end up coughing for weeks – definitely something to be avoided! I squirted some Vick’s First Defence up my nose and as the evening wore on I didn’t think it had done any good. I went to bed with some hot lemon and honey and slept well, and in the morning there was no trace of it – so I’m not sure if any of my remedies worked, or whether the whole thing was a false alarm! Anyway, I am fine, and was able to go to KnitterNatter (our church craft group) in the evening, feeling better after resting all day.

The wound where my port was removed on Tuesday is healing well. I have not had to take paracetamol apart from on that first day, but it is still tender to the touch. I miss having it though, because I used to fiddle with it, and it feels very strange not to have a hard bump on my upper right chest any longer. After a few days the skin adhesive should slough away and the wound become less puckered and red. Yesterday they phoned me from the hospital to check that everything was OK, and I as able to report that it was fine and there were no problems.

WOYWW 353

Yet another busy week gone by with no art done. It’s got to the stage now where there are double bookings and I’m having to choose which to do! Oh well, I suppose this can’t go on forever! Here’s an extended view of my studio, showing that it has again reverted to its dumping ground status. This always happens when it is not being used for art. It’s worse over the other side of the room.

I’ve been having a bit of a clear-out in the sitting room in preparation for some re-organisation and possible decorating, and I took piles of stuff upstairs and just dumped it all in the studio and office. When I get time I’ll sort through it and have a good tidy-up, and hopefully soon get back to making art. Our sitting room is overcrowded, cluttered and gloomy. Time for a change! I’ve got Plans.

I had my port removed at the hospital yesterday – scroll down to the previous post for details (and full details on my Cancer Diary page). It’s going to be rather uncomfortable for a day or two but paracetamol is helping. It all went smoothly but I feel rather strange about it all!

My fingertips continue to be pretty sore from over a week’s guitar practice – about half an hour each day – but I can see the beginnings of calluses forming, which is good news. I’m still pretty rough round the edges as far as the playing and singing are concerned but it shouldn’t be too long before I’m up to scratch.

On Friday I met up with one of the friends I met in hospital, at the cancer support centre for the monthly relaxation session, and made a couple of new friends there too. It was a great session, followed by a nice leisurely chat over coffee.

I attended an Ileostomy Association meeting on Saturday which included a talk by one of the colo-rectal surgeons from Exeter, on parastomal hernias, which are an occupational hazard for us ostomates – informative, useful, and humorous too! As well as the business side (AGM) we also had a delicious buffet and plenty of opportunity to chat, and visit the stoma supply companies’ reps’ tables. A good day, followed by crashing out on the recliner and going right off to sleep.

I made it to church on Sunday morning, and then went with my hubby to visit Mum in her care home in the afternoon, armed with flowers and a card for Mothering Sunday. Then another sleep on the recliner!

This afternoon we are off out again with the Ileostomy Association for a visit to the Met Office in Exeter to find out just how they manage to forecast our ever-varied and increasingly bizarre weather. I hope we get home in time for my Tesco delivery.

Another KnitterNatter meeting tomorrow evening (our church craft group) – an opportunity to do some more on my UFOs (UnFinished Objects) – at the moment concentrating on my Hebrew alphabet sampler (cross stitch).

Last Thursday night, Phoebe had another seizure – quite a big one. We phoned the vet on Friday but she’s reluctant to increase the dose of phenobarbital unless the seizures increase in frequency, because of possible side effects. Because she seems to distressed and disoriented when it is over, this time as soon as she stopped moving, I scooped her up and cuddled her until she seemed calmer. She is always very clingy afterwards and won’t let me out of her sight. Poor little one.

It’s all go, chez Shosh.

Keep your eyes open for another post soon, showing, as promised, the new stash that I acquired recently. Maybe one day I’ll actually have the time and energy to start using it.

Happy WOYWW, everybody!

The Deportation of Shoshi

I’ve been deported… It’s OK, I’m still living in the UK, safe and sound, but today my port-a-cath was removed under local anaesthetic. Please see my Cancer Diary page for full details.

The whole procedure was a lot easier than I’d expected. The worst part was the injection of the local anaesthetic which really was quite painful. It worked very quickly and the surgeon began the procedure almost immediately. All the staff in the theatre were very friendly and reassuring, and told me exactly what was going on throughout, and asked if I felt any discomfort (which I did not). I could feel a certain amount of pushing and pulling as he freed the port from the stitches holding it in place, and the connective tissue which my body had produced around it. I could not see what was happening because of the position in which I had to lie, but I could hear what was going on.

He opened up the skin along the scar from when the port was inserted so there shouldn’t be any more of a scar than I already had. After its removal, it was just a matter of sewing me up again, with a final touch of some waterproof skin adhesive and no need for any dressing. I can shower when I like, and I do not need to return. I will get a phone call tomorrow to check that everything is OK, and I’ve got a number to ring if I have any concerns.

I was actually feeling rather attached to my port (emotionally as well as physically!) after having had it for 10 months, and I was quite accustomed to the hard little lump on my upper right chest wall, and the catheter which I could feel under the skin, running over my collar bone, and I used to fiddle with it sometimes! I feel quite bereft in a funny sort of way, now it is gone. I asked if I could keep it but they said no – health and safety and all that – they used to let people keep them in the old days but now they are worried about infection – they were sending it to histology to check, but there is very little likelihood of anything. Everything apparently looked absolutely fine.

A cup of tea in the recovery ward, after which I got dressed and sat with my hubby in another room until the nurse came in with the discharge paperwork, and after this we were free to go.

This port-a-cath has been absolutely brilliant. It was more trouble to install, and to remove, than the alternatives, but so much more convenient for me, especially through the summer months when I was having my treatment – being completely buried under the skin, there as nothing to show except a small bump, and I could shower and do everything as normal without having to worry about it.

The removal of the port really does mark the end of my cancer treatment – it’s a real red-letter day. However, in the same way that my emotions were very mixed when I was given my cancer all-clear, so they are today – of course I am glad it is no longer needed and has now been removed, but it’s the passing of an era and I feel rather sad about it in a funny sort of way! I shall feel absolutely fine about it soon, I know – just as I do now about my all-clear verdict. It’s just another milestone along the journey back to health, and I am grateful.

I would recommend a port to anyone about to undergo chemotherapy.

Any old port in a storm.

WOYWW 352

We continue to be very busy, and I haven’t had any time to speak of for art this week. I have done some more baking for the chemo unit, though (scroll down to see my last post for details) and late last night made two batches of biscuits to take in to the Ricky Grant chemo unit when we go in today. (I haven’t got an appointment, but just want to say goodbye to my favourite receptionist who is leaving).

I made cheese and cinnamon biscuits. I was sad last time I went in that a couple of people were not able to enjoy the cakes I took in because they had diabetes, so I thought a savoury choice might be a good idea this time.

I am going back to the hospital next Tuesday (8th March) to have my port removed. It will be strange not to have it any more as it’s been part of me for 10 months. Its removal marks the symbolic end of my chemo and (pending the results of further scans and blood tests over the next 5 years) the end of my cancer.

The only art I managed to do this week was to finish my kitty art journal page.

If you want to see details, please go here.

Also this week I have revived a long-neglected skill. On Sunday after church, our minister asked whether I would sing for them. It has been a very, very long time since I sang in public (or even at all!) and I had not played my guitar since I went downhill with my M.E., and then other things really took over. On Sunday afternoon I dug the guitar out from the recesses of the under-the-stairs cupboard, dusted it off and sat down to have a go. At first it was totally awful but then I expected that – however, what I hadn’t expected was that I remembered all the chords with no problem at all – memory is an amazing thing, isn’t it. I suppose remembering guitar chords is a bit like riding a bicycle, or like touch typing – it’s a sort of muscle memory! At the end of the session my poor fingertips were very painful as all my hard-earned protective callouses had disappeared many moons ago!

Since then, I have been practising for about half an hour each morning. On Monday, putting my sore fingers back on those steel strings took a great deal of courage and it really HURT! However, the only way to build up callouses is to do the thing that made the fingers sore to start with – playing the guitar! Several days on, they are still quite sore, but typing isn’t quite so painful this morning as it has been, and I think I’m on my way. My playing has definitely improved over the succeeding days, and I am sure that I shall be ready to step out in faith and do it in public before too many more weeks are up!

My hubby is thrilled that I am doing it again. There is another member of the family who is also thrilled. Phoebe!

Happy WOYWW everyone, and I wish you a fulfilling and creative week.

I Have Finished my Chemo!

The second of two posts for today. Please scroll down to see my latest Florabunda card collection – worth seeing as the Perfect Pearls are just gorgeous!

I have posted an edited entry from my Cancer Diary page into the main blog because it is such an important event, and I know that not everybody visits the Cancer Diary. Edit: I have been experiencing problems with Blogger (again…) and am unable to post from Blogger’s editor so my latest Cancer Diary page has not yet been updated. Unfortunately I cannot post to any page except the Home Page on my blog from Windows Live Writer, which is my preferred blog editor. Further edit: I have now discovered that this is a problem with Firefox. I can successfully publish posts to my Cancer Diary page if I use Chrome – not my preferred browser, so I am hoping Firefox will resolve this issue in double quick time!

I keep being quite overwhelmed by the fact that today I had my final chemo session! I wonder when I am going to wake up and find that it is not true and that I still have loads to get through... Recently I got really fed up with feeling ill all the time, and wondered if I'd ever get through it but the time has simply raced away, and suddenly I was facing the final session.

I had to wait for nearly an hour before being seen, but in the end this was a blessing in disguise (more later). I was taken in and prepared for the chemo as usual, and then went into the treatment bay. I began by eating the lovely packed lunch my hubby had so kindly made for me, and continued through the afternoon with a combination of a bit of colouring for my Florabunda card project, reading my book, and doing part of a puzzle, and chatting with some really lovely people. One lady told me she’d recently had a colostomy and wasn’t dealing well with it. I had a chat with her and said that how she felt did not alter the fact of it being part of her life, and that a change of attitude would really help her. I shared my story, and also gave her quite a few hints that I have learnt along the way. I got some nice feedback from one of the nurses later, that this lady had found the conversation very helpful. I shall be very happy if any of my experiences over the past year can be used to help others even in a small way.

The atmosphere is so friendly on the unit and even people whose cancer is terminal have the most amazing upbeat attitude and are full of smiles, and the resolution to make the absolute best of whatever life remains to them, and everyone emphasises the importance of family, of love, of appreciating each and every day, of counting one's blessings - all those things that money cannot buy, and which are of infinite worth. All attitudes and thoughts I have been cultivating over the past months! The nurses are also all amazing, and the clerical staff too - there is a lot of laughter in what is a happy place, despite the seriousness of its raison d'etre. Logically, it should be a place of doom and gloom and depression, but the resilience of the human spirit, and love and caring, make it quite otherwise.

My hubby arrived while I still had about a quarter of an hour of chemo infusion to go, and then I saw the machine count down from one minute to zero, and my final beeps began, and I raised all my imaginary flags! The nurse who had been looking after me today, came and did all the necessaries to finish my treatment, and I was free to go.

By this time, because of the delay at the start, all the other patients had gone, and the nurses were not all rushing around being ultra-busy, so I got my phone out and said I wanted some photos of me with them all. They were all very enthusiastic about the idea, apart from one who wailed, "I haven't got any makeup on!!" in very good humour, and was instantly shouted down, in equally good humour and a lot of laughter ("We haven't got time to wait two hours..." "I've got some permanent markers in my locker..." etc. etc.!!) We called Emma, my favourite desk clerk of the team who work on reception, and she came and joined in the photo shoot too.

Here are the photos I took of the Ricky Grant Day unit (looking very strange with no patients!) - you will see what a lovely place it is, and how they have gone to a lot of trouble to introduce restful pastel shades, and a lot of pale wood panelling, to make it look less "hospitally." The first photo shows the corner of the reception desk, looking down the further corridor, which has doors off to the right with separate treatment rooms, some of which have couches in them for people to rest on while they have their chemo. You can see the drip trolleys on the left, which are used for the treatments.

Looking back the other way from reception, you can see the wide corridor that also serves as the waiting area. As usual in every hospital waiting room I have ever been in, there are NO spaces to park wheelchairs, with the result that I ALWAYS feel as if I'm in the way! I have written this on numerous feedback sheets but so far nothing has happened to remedy this - considering how many disabled people attend hospitals, I think this is quite an oversight. On the far right of the foreground of this photo you can see the large rubbish bin, the space in front of which has become my favoured parking place! (Make of that what you will, lol!)

Behind the seats in the waiting area are two wide gaps giving access into the two treatment bays. The next picture shows the first one, where I have always gone. On the right, between the windows, you can see a low dividing wall which separates the two areas. The second area has a wide-screen TV on the wall. It looks very odd with no patients sitting in the chairs (you can see one of the recliners in the corner - my preferred seating as they are very comfortable, and the other chairs certainly are not - at least for me!), and the occasional tables which have jars of sweets for people to suck to take away the horrible taste of the chemo. Along the wall, on the white strip, are numerous power points to plug in the drip machines.

Here is Emma, my favourite reception clerk, at the desk. If you look carefully it looks as if she's got three arms. This is because one of the nurses was hiding behing her, unbeknownst to her, and raising two fingers above her head, which you can just see if you look very carefully! Lol!

Finally, here is the group shot my hubby took. I am leaning back with my arms around the two nearest to me, and I look so FAT!!! (OK, I AM fat, but not as fat as I used to be!) You can see how happy everybody looks.

I was sorry that several of the lovely nurses who have looked after me over the past six months were not present today. I shall be emailing one of them with the photo so that she can pass it on to the others. They were all exceptional people, so friendly and encouraging and helpful, and efficient in their work - so sad that they are so busy because there is so much cancer about. They are unfailingly cheerful, remember our names, and give us the very best treatment. As we were leaving, Emma gave me a questionnaire to fill in about what I felt about my treatment, and I gave them a five-star rating on every count, and in the comments section, said that if chemo could ever be considered to be fun, it would be, given the nature of the truly wonderful staff on the unit, and that they all deserved a gold medal with diamonds on it. When I started writing, they all started chipping in with remarks like, "I (Emma) am the most efficient clerk on the unit," and "I am the best nurse," and "I am the most beautiful nurse" etc. etc.!!! Eventually I cried out "Stop! If I start writing that I'll forget someone and they will get upset" lol! We had such a good laugh.

Although I am absolutely 100 percent delighted that my chemo is now finished, I am going to miss going to Ricky Grant and receiving such loving and caring treatment. I shall be going back, though - I have an appointment in six weeks' time for port flushing and bloods, and will probably be returning in the future for further blood tests until I am guaranteed clear of the cancer, so I shall be seeing them all periodically, just not on such a regular basis.

I also want to make more things for the chemo people. I have been thinking about this, and while I simply love to give things away, and would be happy to continue to do this, it occurred to me that if I charged a token amount for each item, the gift would be a double wammy, because the recipient would have something nice to treasure without breaking the bank, and the unit would benefit from more much needed funds, so that they can continue to give others the excellent care that I have received. There is a box on the reception desk with cards in it that people have made, and I could certainly do some for them in my own style, and I could make other items too. I have gained so much from my six months' attendance on the unit and it would be a nice way to put something back, and also an opportunity to call in every now and then and catch up with everybody.

My hubby took me home after this, and I really wasn't feeling too bad. I managed to eat a nice evening meal, and while I do feel slightly peculiar, and have had a little peripheral neuropathy in my hands after touching something cold, it is not there in a big way and I haven't resorted to my gloves. Like last time, I may find that week 1 is pretty good, and I may crash again in week 2, but we shall see.

I think that already, the effects are less severe because my whole attitude has changed now that the treatment has finished. I am feeling so good that phase 3 of my journey is now at an end (phase 1 being preparation for surgery and then the actual operation and hospital stay; phase 2 being learning to manage Kermit, my stoma, and phase 3 being the chemo). Phase 4 can now be called "the recovery phase" when I can really concentrate on getting well. I am convinced that I am going to be OK now; they are all very optimistic at the hospital that all the cancer has gone. I shall do my best with eating the right foods to help my body expell the residue of toxic chemicals from my system, and my positive attitude and determination will also help me along the way.

What a journey this has been! Phase 4 will include the CT scan and further blood tests in the next 4-6 weeks, and then ongoing for the next five years. At some point I shall have to go in to have the port removed, but they will most likely leave it in for a while until they are sure it won't be needed any more, and this means I shall have to return to the Ricky Grant unit for it to be flushed every six weeks if it has not been used. However, during phase 4, I shall be concentrating on getting my life back on track at home, and gradually taking on my previous roles on the domestic front, relying on my hubby on the days when I am feeling not so good - he has had plenty of practice and I am sure he won't mind stepping into the breach when necessary. I am not intending to rush into doing too much and setting myself back, but I shall be sensible and continue to listen to my body.

Amazingly, today, the "Daily Blessing" in my side bar has come up with this:

Friday October 16, 2015

Today's Verse:

Brethren, I count not myself to have apprehended: but this one thing I do, forgetting those things which are behind, and reaching forth unto those things which are before, I press toward the mark for the prize of the high calling of God in Christ Jesus.

Philippians 3:13,14 / KJV

How appropriate.

Third Chemo Treatment

Yesterday I had my third chemo treatment, and on the previous day (Thursday), I had my vampire and oncology appointments. Full details on my Cancer Diary page.

Unfortunately they experienced some problems getting blood from the port this time, but on the third attempt, with me lying flat, they were successful.

Then I had my oncology appointment and saw the registrar, and I told her what a bad time I had had following my second treatment three weeks previously. She said in view of this, they would reduce the dose by 10 percent. She also doubled the dose of anti-nausea medication.

I discovered that the total number of treatments would be only eight, as opposed to the nine or ten I’d been anticipating. I have worked out that the last one should be on 16th October, and not going on into November as I had feared. This means that after the next treatment, I will be half way through the course! This makes me feel a lot better about everything.

The treatment proceeded as before, and again, despite the lower dose, I started to feel the effects during the last hour of infusion, and by the time they had finished with the final flush, I was feeling quite poorly. It wasn’t as bad as last time in that I didn’t have to take to my bed on our return home, and I managed to eat a small supper.

The effects are quite severe but not as bad as last time. This morning I rested half the morning in bed, and when I got up I felt so much better that I was able to spend an hour or two in my studio and finish the card I’d been making from part of the masterboard I made a few days ago. Photos will follow once the recipient has her card.

Towards lunch time I suddenly caved in with exhaustion and feeling shaky and nauseous, so I came down and took an anti-sickness pill. After a very light lunch I felt a lot better. I have been resting on the recliner all afternoon watching TV and DVDs.

Generally speaking, I have already started feeling a lot better than immediately after the second treatment, so hopefully I shall have a much more productive three weeks this time, which makes me feel more upbeat!

I hardly made any progress on my angel project during the last period, and I am now hoping to be able to crack on with that. I ordered a DVD on cloth art doll making and that arrived today, and I am very excited – the dolls, and especially their faces, look extremely complicated to do, but the instructions on the video are so clear and taken step by step, that I see no difficulty in managing to do it! Here’s a link to her DVD introductory video on Youtube, and I am very grateful to my blogging buddy Judy in Australia for sending me various doll-making links, including introducing me to this wonderful lady who is such an artist and such an excellent teacher too.

Stamp Mounting and a Health Update

This afternoon I mounted some unmounted rubber stamps I’ve had for a while. I got these from Chocolate Baroque – 2 A4 sheets named “Harlequin Fragments” and “Lace Fragments.”

Chocolate Baroque stamps are gorgeous – I have a few different ones. It’s always worth checking for “broken biscuits” on their site. I’ve never come across this idea anywhere else but it’s brilliant. Sometimes when they manufacture a sheet of stamps, it comes out faulty, but maybe all but one, or most of the stamps on the sheet, are perfectly fine, so it would be silly to ditch the whole sheet. They cut out the OK ones and when they’ve got all the stamps that would be on a perfect sheet, they sell them as “broken biscuits” – perfect stamps making up a complete set, but just not all in one piece! They are going to be cut up anyway, so who cares if some of them are already separate? There’s a significant price reduction and well worth getting. Of course it’s unpredictable which sets will be available as a “broken biscuits” set but if you’re prepared to wait, the set you want may come up eventually. A great idea, for both the manufacturer (no waste) and the customer (good value)!

Today the EZ Mount Foam I ordered arrived. This is a foam rubber sheet with an extremely sticky surface on one side, and a cling-mount surface on the other. You peel back the backing sheet and arrange your unmounted stamps onto the sticky side and then cut them out. There’s another backing sheet protecting the cling-mount surface, and once you peel this off you’ve got your stamps mounted and ready for use with an acrylic block.

This is a job I loathe doing. Even with my Tim Holtz scissors that have non-stick blades, the scissors and your fingers get extremely sticky and it’s pretty hard work! I recently discovered a Youtube video on cutting them with a hot knife, so I gave this a try today. I didn’t do quite such a good job as on the video but it did make pretty short work of a horrible job, and it also made the most horrendous smell! Here’s the equipment I used.

I used a glass heat proof kitchen cutting mat. You can see the sheet of EZ Mount Foam, some adhesive remover wipes, Tim Holtz scissors and talcum powder, and my hot knife – this has interchangeable blades.

When I’d finished, I dipped the scissors in talcum powder and trimmed off the excess around the stamps, and cleaned up with an adhesive remover wipe. Great results all round.

Here are the two sets of stamps, cut out and mounted, and ready to use.

I was interested to read yesterday that it isn’t a good idea to store EZ Mount Foam mounted stamps on an acrylic sheet because there’s a chemical reaction that happens between these two surfaces and your stamps can end up permanently fused to the acrylic! Time to sort my stamp storage, I think! They ae perfectly fine loose in the bags like these ones. I keep the original packaging and/or leaflet so I know the name and manufacturer of my stamps, and they are hung on my little rail above my work desk. I got the split rings and the conference badge clips from Ebay, and used a piece of wooden dowel slotted through the ornamental shelf brackets to hang them from. It works brilliantly and my stamps take up very little room.

 

Health Update

This morning we went to the hospital for my pre-chemo bloods to be taken, and for my oncology appointment. I have to go to the hospital for this, rather than the surgery because extracting blood from a port requires special training that the surgery nurses have not had. This morning it was pretty horrendous because although they were able to insert the needle and flush the port-a-cath, the blood simply would not flow! On the third attempt she got a reasonable sample.

We then went down to Oncology and I saw Dr. Dyke, Dr. Lo’s registrar. I reported to her how poorly I have felt throughout the three weeks since my last treatment, with all the side effects being more severe and longer lasting than after my first treatment, and after consulting with Dr. Lo, she said they would reduce tomorrow’s dose by 10 percent. The amount is calculated on body weight but every individual is different and not everybody responds in the same way, and sometimes adjustments need to be made. I also asked if she knew exactly how many treatments I would require, because all I’d been told was that it would go on for six months, and I’d worked it out at 9 or 10, depending on when they stopped, and she said it would only be 8! I am very pleased indeed to hear this, because three weeks from tomorrow, I shall be half way through!! Yaaayyy! Full details on my Cancer Diary page.

Helping Patients Prepare for Medical Procedures

I have been approached by a lady in the USA who represents a company called American Recall Center, which serves to educate people who are about to undergo medical procedures. They help them to know what sort of questions they should ask, so that they are as informed as possible beforehand, which should alleviate their fears. She felt that with my recent experiences I might be able to help with some input. She has asked me to provide a link for “Patient Safety Alerts” on their website:

http://www.recallcenter.com/safety-alerts/

where people can sign up. Their top priority is patient safety, whatever procedures or drugs are prescribed for them.

It’s very common for people’s minds to go completely blank when confronted with bad health news, and for any sensible questions to go straight out of the window. Hospital staff here in the UK at least, are much more prepared for this nowadays, and will always give people ample opportunity for talking and asking questions, even if it doesn’t happen at the time – they will always be able to see someone a few days later, once the news has sunk in and they have a bit more idea of what to ask.

It is also very natural for people to be very afraid, and to react in unexpected ways – they can become totally numb, or very angry, or tearful, and it is very hard to be rational at such times. It is important to remember that you are not alone, and that many in the past have trodden the same path as you, and the staff are dealing with these issues all the time.

I have had lots of advice from people, professionals and non-professionals, to write down everything as I think of it, because once you get in to your appointment these things tend to get forgotten! When I first saw the surgeon, I had such a long list of questions that I was a bit embarrassed, and he laughed at me because he could see I was hiding it! He was very happy to answer them all, and many were answered before I even had the chance to ask them. I wrote down the answers beside each question as he told me, so that I had all the information. I also wrote down things he told me, for which I had had no questions. When I got home, I read it all through carefully as soon as possible, and collated it into a format that was easier to read and remember. The doctor won’t mind you making notes.

There are many different procedures people undergo, of course. My experience was to have my large bowel and rectum removed because of cancer. When they first told my hubby and me, immediately after I came out of the colonoscopy, that they had found “something they didn’t like the look of” and that I would have to have surgery, my first question was, “Could it possibly be benign?” At that stage, all she would say was to repeat that they didn’t like the look of it. As the conversation proceeded, it was clear that I had a malignant tumour. I was given a sheet of paper with contact numbers on it and the names of the people who would be caring for me in the coming weeks, and was told that they would be very open with me as regards information, and that I would be fully involved in any decision making regarding my care; they wanted me to feel in control of things, which would prevent me feeling too vulnerable and afraid. This was very reassuring, and helps no end in bringing about the very best outcome to one’s procedure, with a faster and easier recovery, with fewer post-operative complications. Anything that reduced stress is good.

Everybody seems to have been able to give me ample and adequate time to discuss things in detail. I had excellent appointments, for example with the anaesthetist (pre-assessment) where everything about the Enhanced Recovery Programme was explained, and what extra care I would need to make allowances for my M.E. and heart problems.  When the plan was changed from simply the removal of the cancerous portion and sewing the ends of the bowel together, to a total colectomy and the formation of a permanent ileostomy, this was fully explained and I had ample time to process the information. It was gently and kindly done. I was involved with the stoma team from the word go, before my operation, to prepare me for what was to come, and my questions were all answered, and information freely given. I was provided with a starter pack with some sample bags to handle and get accustomed to, and some information booklets and a DVD.

I had special concerns about not being rushed into too speedy a recovery after surgery, because of my disability, and was reassured that this would be taken into account. I had a brief problem with one of the nurses and had a vulnerable moment when I felt not listened to, and forced to do more than I felt able to do, and I passed on this complaint, and thereafter there wasn’t a problem. Communication is key. If you have any worries, it is vitally important to tell somebody straight away – if you have told someone not adequately qualified to deal with it, they will pass it on to the right person, or fetch that person to speak to you. I believe it is very important to remember that YOU are the most important person and that the staff are there to care for you and do what is best for you, and they have a responsibility to listen to all your concerns, and that they won’t know what is worrying you if you don’t tell them.

Many people in the past were very afraid of too much information and preferred to proceed in ignorance. This had the potential to generate a lot of unnecessary fear, which affected the outcome of the procedures involved. I think more people these days are wanting to be much better informed. This is largely due to better education, and freely available information on the Internet – people are much better informed generally these days about medical matters, and the mystique of the medical profession is becoming a thing of the past, which is a good thing. Doctors are not gods, and they are not perfect; if they are any good, they will be open to proper balanced discussion, and if you are not getting this, and are feeling short-changed, you have the right and responsibility to say so, not just for your own benefit, but for the benefit of those coming after you. They are doing their job all the time, day in, day out, but we only have one chance at this, one operation, one problem, and it takes on huge significance in our lives, and sometimes doctors need to be reminded how differently these issues affect us, from the way they affect them as professionals.

Whenever an operation, test or procedure is recommended for us, we can feel a lot more secure if we know exactly what is being proposed. For instance, someone undergoing an MRI scan may be terrified because they suffer from claustrophobia, and they may want to know if there is an alternative procedure they can undergo instead, or whether they can be sedated. It is important to understand any risks of procedures, as set alongside the benefits.

I found that doing a lot of online research about my various procedures helped a great deal. For instance, when I knew I was having chemo, and that this would be infused into my body via a PICC line, I went on the Internet and had a look at a lot of information and pictures of this; it was not something I had come across before. I could see that I would have a line coming out of the crook of my elbow for the entire six months’ duration of the treatment, and this would have to be covered up between treatments. With the summer coming on, I didn’t really fancy this, and was worried about knocking it, showering, the risk of infection etc. etc. I did some research into alternatives and discovered the port-a-cath, which is embedded completely in one’s chest with nothing to see at all between treatments. OK, the procedure to insert it is much more complicated than the PICC, involving a general anaesthetic, but thereafter, the hassle is completely minimised, making life very much easier and more comfortable. I decided that this is what I would prefer, so I phoned the specialist nurse and asked if I could have it. She was amenable to the idea, on condition that my oncologist approved, and the approval came back without delay. I felt empowered that my choice was taken seriously and acted upon, and I feel very much more secure and confident as a result. I would have been happy to go along with the PICC instead, if they came up with some reasonable objection to the port-a-cath; it is important that we listen to the experts as well as talk to them about what we want; after all, they have the information and experience and ultimately know what is best for each individual, but there is flexibility in every situation, and there should always be the opportunity for equal, open and reasonable discussion. You and those involved in your care should work together as a team and it is important to develop a good working relationship with them; they will get to know you and know where you are coming from, your attitudes, your hopes and fears. Again, communication is key, making your views and feelings known, and listening to the wisdom of the experts.

For anyone about to undergo any medical procedure who is reading this, I hope it has been helpful and informative. Please do not hesitate to comment and ask any questions you may have, or add anything you may think I have left out. Anything we can do together, to help us get a better service and help us to feel better about what we are going through, is bound to be a good thing.

WOYWW 314

I suddenly remembered it was Wednesday, and I actually did have something on my desk for once, so I thought I’d better join in, even if a bit late in the day.

Actually, What is On [My] Workdesk (this) Wednesday is… chaos!

Here’s a general view of that side of the room.

I’m not a tidy worker once I get In the Zone and also my ARTHaven does tend to end up a bit of a dumping ground! Let’s zoom in and see what the chaos consists of.

The above picture shows the plastic tray full of the lavender sachets I am making for my fellow chemo-ites, together with the little one-piece folded boxes I’ve been making to contain them. Also in the tray is most of what I need to sew the sachets, and odd bits of fabric and other bits and pieces.

Moving on round, this is the box of gorgeous stash my friend Marlene sent me yesterday – she’s having a bit of a clear-out and being ruthless about things she thinks she will never use – if that were me, I know that as soon as I gave them away, I’d find a use for them!! Anyway, this is the second parcel she’s sent me, and so far all I’ve done with this one is have a quick look through it, and then put everything back in the box ready to sort and store away.

Lots of lovely embellishments, charms, ribbons, papers, pens… all sorts!

Moving a bit further around, completely hiding my computer keyboard, is some of the original parcel Marlene sent me, which I have not yet stored away. I have made a start, and have used some of this parcel already, in the making of my lavender sachets.

Now to my main work area. On the left at the front, you can see the lavender sachets I made from calico, onto which I stamped with archival ink. I am now working on boxes for these, and you can see the pieces on the craft mat, which have been inked with Old Paper distress ink. To the left you can see my Stampotique Originals Medium Bee stamp which I am going to use. Beside the box cut-outs is my leaf stamp from Designs by Ryn, which I am going to use on the box I am currently working on, which you can see I have coloured with various shades of green distress inks. My Versamark pad is ready beside the stamps. I am going to stamp the other side of the box piece with clear embossing. More details of this in a future blog post. You can also see my water spritzing bottle beside my archival ink pads, and beside that, my water jar which for once has clean water in it!! (Sometimes it gets left dirty for so long that I almost expect it to be growing mushrooms.) Lots of Distress Inks on the right, and a piece of kitchen paper I’ve been using to mop up ink – it’s maturing nicely into a useable piece for backgrounds.

Moving on again, this is my pull-out unit, which is used for dumping stuff on while I work.

Today it’s got two Really Useful Boxes on it. The smaller one on the left has my stamping stuff in it, and the one on the right contains my Dylusions and other sprays.Dumped on top is the lid of the stamping box, and underneath you can just make out my pan pastels, and the bag of makeup sponges. Beyond is my Cuttlebug. The pull-out unit’s shelves are for storing various papers and cardstock.

I am hoping to continue working on the boxes tonight. I have very little time to complete this project as I want to take them in to the chemo unit on Friday when I go for my second treatment.

This morning I was there having blood taken from the port in my chest, which wasn’t too pleasant (but I’m such a wimp!). It will get easier! This past week I have been feeling a lot better and have very few side effects from the first treatment, but I am not anticipating feeling so well on Friday evening! The effects are cumulative. I saw the oncologist last Thursday and she was pleased with how I was getting on. They are monitoring my progress carefully.

I am determined to do as much creative stuff as I can during this six months of chemotherapy, even if it does mean the sitting room looks as if World War Three has hit it, with boxes and fabrics and other creative detritus covering every surface! Our cleaning lady was here today and I asked her to clean around everything as usual, and she said, “I can’t polish the table” to which my hubby replied, “What table?” “What cheek!” I say!! Lol!

Happy WOYWW everybody.

Installation of Port and First Chemo

Well – the journey has begun! We turned up as requested at the Ricky Grant Day Unit as requested, and got booked in, with the usual form filling and Q&A session – I am very grateful for their thoroughness! Then down to theatre for the installation of the port under general anaesthetic. As usual, not aware of time. When I was coming round I thought, “Oh no… I forgot to set the alarm and I’ve overslept and missed my appointment!” Lol! In the recovery ward for a while and then back to Ricky Grant, where they gave me a snack lunch, and then my chemo began.

Flushing the port with saline was followed by anti-sickness medication and steroids, then flushing with glucose and finally the oxaliplatin, which took about 4 1/2 hours – they squeezed the very last drop out of the bag! Then further flushing with glucose and a final flushing with heparin and saline, a change of dressing over the port wound which had bled a little, and then home.

Side effects almost straight away – definite signs of peripheral neuropathy when touching surfaces colder than myself, and a weird and painful sensation with my first mouthful of food. Nothing else so far except feeling fairly spaced out but that may be the residue of the anaesthetic. I know that the effects will be cumulative with subsequent cycles but I’m not complaining so far!

(Very) full details on my Cancer Diary page.