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.

Florabunda Book

Even though the oncologist reduced my chemo dose by 50 percent on Friday, I am still feeling extremely wiped out and exhausted. However, the peripheral neuropathy is much reduced, which is a good sign, and this was the main reason for the dose reduction. My appetite has been poor these past couple of days and I’ve just got to do my usual, and go with the flow, rest as much as possible, sleep when I need to, and try to keep as positive as possible, always remembering that I now have only one treatment to go.

Recently I commented on Neil’s blog and amazingly, I won the book he was reviewing, of which he had a couple of copies to give away. For someone who never wins anything this was a big surprise! The book arrived today.

It is written by Suzanne McNeill of Design Originals, a prolific Zentangle artist and CZT (Certified Zentangle Teacher) in the USA. Her videos are a delight – this lady is so full of joy and inspiration! This latest book is a sort of offshoot of Zentangle, being a form of floral doodling. There is loads of potential for design with this – in the same way as Zentangle, you build up the designs one stroke at a time, from simple elements. She shows how to get different effects with different types of pens and colouring, with lots of inspiration for creating different projects

Neil popped in this adorable little tangled card he made for me with my initial on it, and with some kind words inside.

Here are a few sample pages from the book. I am sure you will agree that it is beautifully produced, and high quality.

It contains pages that you can colour in yourself, and plenty of blank spaces for developing your own practice drawings.

I love the lettering section towards the end. Lots of inspiration here!

I hope this sample has encouraged you to look further at this.

I am just starting another card factory to replenish my stash, and this time I am intending making lots of relatively simple cards that I can produce fairly quickly, while my energy levels are so low. This book has come at an ideal time – I can do some simple floral doodles on small squares of card while resting on the recliner, and make them up into cards in my studio during those short periods when I feel up to sitting up at my work station.

Watch this space!

Thank you so much, Neil, for making this offer of the book to give away. I am highly delighted to have won it, and it made my day receiving it today when I am feeling rather poorly.

A Quilty Hug

Recently, I gained a new online friend in the form of Maria, who started commenting on my blog. I mentioned how she has donated quilts to a favourite charity in the USA, Happy Chemo! in my last post. She contacted me and said she would like to send me a quilt for comfort during my chemo sessions. As you can imagine, I was overwhelmed by this kindness and accepted with alacrity, although I felt I did need to remind her that I was located in the UK and that the postage may prove too much, but this did not deter her one bit!

Today, my beautiful quilt arrived, and I was so excited that I could hardly contain myself as I struggled to open the box and reveal the treasure within!

Here it is.

Isn’t it stunning and beautiful? I am so, so thrilled with this marvellous gift.

In with the parcel, Maria had put this hilarious postcard for me – a little education for an ignorant Brit, from a full-blooded Southern Belle, on how English should be spoke!

I hope all y’all are as moved as I am by my new friend’s generosity and kindness. She knows only too well what it is like enduring the rigours of chemo, and how much a quilty hug can mean. Hop over to her blog and just take a look at all the beautiful quilts she has made. Not only is she a very skilled quilter, but I love her turn of phrase – she’s an excellent writer too!

Reading about her, and about Happy Chemo! challenged me to do something to bring a little cheer into the lives of my own fellow chemo sufferers, which is why I have started making my little lavender sachets to give them, to bring them the healing and comforting scent of English lavender from our neighbour’s garden.

As I endure the rigours of chemo in the months ahead, I know that as I look at my beautiful quilt and feel its texture and warmth, and revel in its colours and patterns, I shall be comforted and lifted out of myself, and even when I am feeling at my most poorly, to know that I am loved and cared for, and that people all around the world are praying for me, and I have more blessings in my life than I could possibly deserve, and how impossible it is to count them all.

When we hear everyday on the news of all the awful things that people do to each other in this world, it encourages me no end to know that not everybody is like that, and that there are people who reach out across the world and perform acts of kindness to bless others that they hardly know. I have been challenged a lot of late with the knowledge that I really do very little for other people, and how I could be using my own God-given skills and talents to bring some sunshine into the darkness of the lives of others. Thank you, Maria, not just for this wonderful quilt, but for giving me the push I needed to start doing this in a small way. May God bless you.

Home at Last!

I came home yesterday afternoon, after waiting 6 hours from being told I was being discharged, to receiving my drugs from the pharmacy. They also had to fix up the district nurse to come in each day to give me my daily Fragmin injections which have to continue for 28 days post surgery.

First of all, I want to say the hugest THANK YOU to dear Lucy for co-authoring my blog for the duration. It has been wonderful to know that all you my lovely friends out there have been kept up to date with news. Lucy has been co-authoring my blog during my absence, and getting updates from my hubby.

I also want to say another huge THANK YOU to everybody who has sent such fabulous comments, emails, cards and gifts. I have been overwhelmed by your love and kindness, and know for a fact how much you have all helped me gain a good outcome for my surgery by your tremendous generosity. I am going to try and reply to every comment and thank each person for their beautiful hand-made gifts and cards but I’m afraid this is going to take me a long time…

It is really lovely to be home. I had hoped that after 4 or 5 days I’d be up to having the laptop in hospital but I’m afraid that was not to be – I have found it very hard to focus on anything at all, and even now after 24 hours at home, am finding it a struggle to type – it is going to take time, but there’s no rush.

I am coping very well with my recovery. Shortly after my hubby brought me home yesterday, he went out to Newton Abbot station to pick up my lovely friend Alison – we first became friends at school 50 years ago! (Goodness that makes me feel old!) She and her sister take turn and turn about, looking after their elderly parents, so she works very hard, but she volunteered to take time out to come down and stay and look after us both! Not only is she seemingly a bundle of energy (she even found time to bake scones this afternoon!) and very practical and helpful, but she is a retired nurse (not many people end up with their own private nurse when they come out of hospital do they lol!!) and just having her around is a tremendous tonic – we have been chatting and laughing and remembering lots of fun things. Even if we don’t see each other for several years, we always just pick up where we left off and the years fall away. I am so, so thrilled to have her with us – more than words can say!

While I was in hospital, to start with the nurses simply emptied and changed my stoma bag for me, but after a few days, the stoma nurse came daily and showed me how to do it for myself. From the beginning my hubby was fully involved, and after a couple of days we were doing it together – he laying everything out, and helping with each stage, and one day doing the whole thing himself – learning how to do it for those bad M.E. days when I may not feel up to it. He has been soooo supportive and wonderful over it all.

I am surprised how un-freaked-out I feel about the whole thing – it is far less arduous than I ever expected. Now it is settling down and easier to handle in many ways. I shall be writing more fully about this in the coming days on my new blog, The Gutless Bag Lady.

They wouldn’t let me home until the nurses, OT, physio, stoma nurse and doctors were fully satisfied that my blood pressure was sufficiently raised (it had been very low), my mobility was improved, and my independence up to scratch, and that I could manage the bag myself. I was ready to go on Sunday, but because of the bank holiday weekend, there was nobody around until Tuesday to say that I was fit to go. The next hurdle is to wait for the next MDT meeting (which unfortunately couldn’t take place on Good Friday but will be this coming Friday) when the histology results will be discussed and decisions will be made about whether I have to have chemo. More of the waiting game…

I never thought that being in hospital could be FUN! The first half definitely wasn’t fun, but as I started to get better, things definitely improved in that direction! I am too tired now to say more, but in a subsequent post I’ll fill you in and share some of the laughs we had, and also some of the wonderful experiences I had and the lovely people I encountered.

Thank you again, everybody, for all your tremendous support and encouragement throughout my journey this year. Your love and care have meant far more than inadequate words could ever express. God bless you all.

Views from Shoshi's Settee - M.E.

After all that busy, busy, busy, making cards recently, I'm totally exhausted today. I've been what my hubby calls "floppy" all day, and have hardly stirred from the settee. I didn't wake up until late this morning and didn't actually get up till around 11 a.m., and then slept again on the settee this afternoon for an hour or so.

This is the dreaded "payback" after a person with M.E. has overdone things. It's one of the cruellest aspects of this illness - it's very unpredictable, because the "post-exertional malaise" can be delayed up to several days after one has overdone things, or it can come almost immediately. You just never know... Also it's uncertain how long it will go on. With me it's usually over after a day or so (depending on how much and for how long I've overdone things) but with some people, even a minor amount of overdoing things can send them into a relapse that might put them in bed for a month.

I've felt very weak, had more muscle twitches than usual, and have felt utterly drained of any energy to the point when even lying down and breathing makes one feel tired. I've had a headache most of the day and my temperature regulation has been poor - rather like having flu but without the sneezing and runny nose. Although it hasn't been too bad today, I sometimes suffer from hyperacusis when I'm like this - the slightest sound is unpleasant and makes me jump out of my skin!

I'm hoping that I shall feel better tomorrow, because it's my dad's birthday and I want us to drive over and see him, and I've also got to do some food shopping. There's a whole heap of things waiting to be done as well, but I shall just have to get to those when I can.

One of the most important things I've learnt through having M.E. is that however bad I'm feeling physically, it's important to give thanks for all the good things in my life, and to keep cheerful and remember things could be a whole lot worse! I have so much to be thankful for, and it's rare for me not to be in good spirits, although I do let frustration get the better of me on occasion.

Fighting this disease is the worst thing you can do - it just makes everything much worse! The best thing to do is to go with the flow, listen to your body, rest when you need to, pace yourself when you're feeling better enough to do things, and accept your limitations. I know that I am unwell, disabled and need a lot of help, but I am still "me" even if it's "me with M.E." and the M.E. isn't what defines me as a person. It's part of my life, but not the most important part!

The most important part is the people and relationships in my life: God and my relationship with Him through Jesus, my wonderful hubby, my parents, my friends, including those I've met online, and also a sense of humour and a bubbly, up-beat personality, my creativity and appreciation of beauty in all its forms, our kitties, the beautiful place where we live, the fact that we have enough when so many people have so little, and bright hope for the future.