I’m all out of wool, I’m so lost without it

and I’d run out of cream which was going to be my edging colour for both the inner squares and the outer rectangles.  So under duress he brought me a new 400g ball of cream aran, a pair of 4.5 mm knitting needles and the substitute cable needle.

I had found a lovely little jacket pattern at knitty.com –

I also tracked down a hat pattern at sweaterbabe.com – Cable Baby Beanie – and altered the rib to moss stitch and changed the cable stitch to match the one on the cardy.  After B brought me a darning needle in this afternoon, they both now look like this…

Needless to say finishing things off seems to usually take ages but it’s now done and I have nothing crafty to do.  I knew I should have pressed B to bring me something else in addition to the darning needle – he didn’t even want to bring me that suggesting I might prefer to ‘Have a rest’.

Now I’m not saying I’m easily bored – oh wait, yes I am actually.  Yesterday I changed my own bed – and not because I’d had a boo boo I’ll have you know.  I was about to remind the Health Care Assistants when I thought ‘What’s stopping me doing it?’  The answer was nothing and it made a change since B changes the bed at home because the bending starts my back off however with the benefit of an adjustable bed no bending was required.  I also assisted today – well I’m going with ‘assisted’ but ‘hindered’ is probably a better description.

One of the registrars called in this afternoon and asked whether Prof had said if I could go home after the chemotherapy had finished or if we needed to wait until my counts went back up before I got released.  As it turned out I got disconnected while B was here and if I’d thought on I could have pushed to go home then!  Just kidding!!! B wouldn’t have gone for it and the nurse I said it in front of thought that that was being a bit too keen – plus although B has cleaned the bathroom today he still apparently needs to wash the bed sheets.

I forgot to mention that I’m concerned that Prof knows me too well.  As I’ve said me and the steriod Dexamethasone don’t mix well so when I got my first dose last Thursday and it was the same as last time I queried it as Prof said we’d look at reducing the amount.  The nurse said she’d ask about it and shortly after Prof and one of the junior docs arrived and he informed her, to her surprise and the surprise of the nearby nurse and subsequent visiting registrar, that in view of my extreme reaction to Dex it was up to me how much I took.  There I was all geared up for putting my case across for taking less than suggested or in fact none at all and I ended up with free reign.  Prof’s method actually worked like a charm and I had to give proper consideration to the amount I wanted to take and felt I had to take some as I’d been entrusted with a completely voluntary decision and indeed when the registrar suggested that I might want to consider taking 6 mg instead of 4 mg I immediately wanted to say ‘No way’ even though I’d thought this myself.

Other Creative Spaces can be found here – at least I’ll have plenty of time in the morning to do some serious looking at other craftiness.

Still Here!!

Really….I haven’t dropped off the face of the earth. Things have just been very busy for me right now. I’m a self employed bookkeeper and it’s tax time. Need I say more?
I will return to write more posts when things settle down here a bit. In the mean time, check out the new page that I started to keep the details of Mr. B’s medical progress. I know how much it helped me to read about the medical side of things when Mr. B was first diagnosed so I thought I would try to write more about that. I wanted it to be on a different page of this website so that I could continue to keep this page for more of my side of things.
Be back soon. :-)

Peritoneal Dialysis Training

After Haemodialysis (HD) on Tuesday I sauntered down to the Peritoneal Dialysis (PD) Unit to start my CAPD – continuous ambulatory peritoneal dialysis training.  When I left at three ish the sister said ‘Go home and relax, you’ll be tired after this morning and the concentration this afternoon’.  I thought ‘Well I have been awake since 5.25 am but don’t feel too tired.  However I got in the car and felt whacked.  B took Bud for his walk while I had a shower, put my jim jams on and settled down on the settee.  A friend phoned at tea time to ask if it was okay if she called round that night – it was a good job I’d had a kip.

Wednesday I went for more training leaving the house at nine and B picked me up at two to go to the dentist.  I’ve still got the numbness in my lip/chin and it’s been a bit achy.  The dentist couldn’t find anything wrong visually or by tapping or poking.  She did say that any ’proper’ toothache could be being masked by the numbness.  We agreed I’d mention it at the Royal and if they recommended any tests she could carry out she was more than happy to do them.

I so nearly didn’t get the appointment.  I got there and the receptionist said I was next on her list to contact as they had a problem with equipment and my appointment would need to be rebooked.  I explained about the forthcoming treatment (still no bed available as at last Friday) and the need to get any infection identified.  The dentist agreed to see me on the understanding that if treatment was required it couldn’t be done there and then.  She was however able to identify that I have good dental hygiene.

A friend called round on Wednesday night and brought her laptop as she couldn’t get her printer to print from it and her son was working away.  As Pat has the same level of patience with anything computer related as the average three year old has with logarithms she asked if I could do it.  The laptop wouldn’t talk to our printer either and when I attempted to connect it to our broadband I discovered the reason I hadn’t been able to connect B’s xbox – apparently you can enter the code 57 times and still not get connected if you’re entering the wrong code – 8s can look a lot like Bs.

Thursday I had potentially my last HD.  Potentially because Prof didn’t want me doing it during chemo as he felt it increased the risk of infection.  However the sisters in PD said it was unusual once PD was started for people to go back to HD, unless they had peritonitis.  The training on Thursday including spotting the signs of peritonitis basically an infection in the peritoneum where the fluid resides.  From quarter past three on Thursday when we left the Royal I was on my own!!!!!!!!!!!!

So far so good apart from some minor boo boos and B asking me if I felt dialysis is taking over and if I thought I had a sh*tty life.  Unlike last year when he asked me this and I countered that by association that meant he did too I just went with ‘No’ – I was lying on the settee at the time half asleep.  The PD is getting quicker as it becomes more familiar.

Last Monday we (I say we but it was mostly B with me getting in the way I think) made room in the garage to accommodate the delivery of my PD supplies.  I think this may have resulted in a pain in my right shoulder blade which I aggravated on Friday when I carried a box upstairs.

I’ll share details of all my free goodies (as pictured below) and what I do with them shortly – basically when I can take photos of the relevant things without contaminating anything that needs to be sterile.

Sniff’s, snuffles and coughs.

So, part of life with myeloma looks like it is going to include being regularly ill. Gutting. Somehow I need to find a way to turn this into a positive…very open to suggestions on this one as I’m struggling to find the good in feeling permanently rubbish! I have worked out that I have had about 3 weeks where I haven’t been ill since the beginning of December and I can promise you, even if it is just a bit of a snotty nose, it is VERY VERY draining!

So, we’ve just had the Easter holidays. It all started well and we had a lovely day out at Black Park, a day with my godson and his sister, and then we headed into London with some of the kids school friends to visit the science museum. All good. Until we got there when my slight sniffle turned into Mount Etna, my cough wouldn’t give up, and I had the energy of a dead frog!! And there I have been for the past week! Yuck. And to top it all my poor little girl was sick on the Thursday for nearly 48 hours over the Easter weekend, and just as we thought we were turning a corner, my little boy was sick last night. I feel so sorry for them when they’re so young, as they don’t understand the sickness, and they certainly don’t understand why they’re not allowed to do anything for 48 hours afterwards!!!

Anyway, enough of the moaning. I did get some fantastic news in the early hours of this morning whilst nursing Sam in his room….my sister is coming back to the UK (from Beijing) for my Glitz and Glamour Ball in November!!! I am so very very pleased! Apparently Nick and another sister already knew and they were all trying to keep it a secret, but it is hard to do that with the person who is organising the whole thing!!!

The ball itself is coming along slowly but surely. I get a couple of raffle prizes each week…need to up that rate a bit but it’s all good!! We haven’t done so well on the sponsorship side of things…I think money is really tight out there. We do have one potential sponsor (still ironing out some details but will be revealed all being well, very soon!) and we’re hoping we will get another one too. If we can get some small sponsors for the rest of the event too, e.g the main course, entertainment etc, that would be great too…..so if any of you know some companies that want some good PR and are up for helping a VERY worthwhile charity (Myeloma UK!), please let me know. Other than that, I’m just grafting on with searching for raffle and auction prizes. It’s not easy as not many of the bigger companies will help these days – you need contacts for everything!!! But friends and family are helping me lots and we’re having all sorts of things donated from perfume, to bottles of wine/ champagne/ to tickets for the theatre. I would ideally like to get over 200 prizes so if you can help at all, please shout. I’m even happy to take unwanted presents etc if they are in good as new condition.

So, I just need to make sure that I’m not ill in the run up to the ball – probably means having everything fully organised by the end of September so I can rest in October….hmm, chances of that?????

 

My Confession

Hello. My name is Shelley. I have an addiction. I thought I had it under control. I said I could handle it myself. I think I might have been wrong. Somebody, please stop me…… I bought another orchid plant. I am weak. But she’s a beauty, isn’t she? :-) Picture This is the first time that I’ve ever seen an orchid with a variegated leaf. I was innocently walking by the floral department in Safeway. I had no intention of making any purchases there when this beast stuck out it’s roots and tripped me saying, “Please buy me”. How could I refuse? This is my 26th plant. Yeah, yeah, I know…I must be crazy. I live in a condo. I promised myself no more plants when we moved in here. But somehow they keep finding their way into my life. They require so little from me and give me so much in return. When they bloom, the flowers last for at least 4 months. Every time one of the plants gets a new flower spike, I wait in anticipation to find out what the flower will look like. Now, a very dedicated gardener would label their plants so that they know what the flower would look like. Me…I like to be surprised. That is part of the fun of growing orchids. I have another one blooming right now. If I remember, I’ll take a picture of it tomorrow and post it here. Plus I have one plant that will have flowers in the next week or so. I’ll post that picture too.

And now you know what brings me joy. And yes, it really is an addiction. Ask any other orchid grower. LOL

Group Hug

Picture Today Mr. B and I took a new step in our journey. We attended our first Multiple Myeloma support group at the cancer clinic. I wasn’t sure if it would work for us to attend it because it is always the day after Mr. B’s chemo treatments and so far those have not been good days. But in good faith….. I decided to book our volunteer driver to pick us up anyway. If Mr. B was not feeling well, then I would have to meet the driver outside and let him know that we would not be attending. The driver program is only for patients so I would not be allowed to go by myself if Mr. B was not attending. I kept my fingers (and toes) crossed that he would feel well enough to attend. He had been struggling the past few days with more rib and back pain so it was not looking good for us to go. But this morning he seemed determined to attend even if he was in pain. There were 14 of us that attended plus the social worker that led the group. 4 of us were caregivers. It was so good for us! We were the “newbies” with a diagnosis of less than 3 months so we were able to question some of the others on how they were feeling or how they felt at the beginning of their treatments. And the most important thing that I took away from the meeting was that EVERY PERSON was different! Each person reacted differently to medications, each person had different pain levels, each person had different blood counts. And some of them had been battling this cancer for over 10 years. I suppose that this could have scared me, but it didn’t. Surprisingly it gave me comfort to know that if you kept a positive attitude, you could still have a quality life. The important thing was to understand your limits. There would be good days and bad days. On the good days, you celebrate life and enjoy as much as you can. On the bad days, it’s ok to cuddle up with a blanket and watch tv or read a good book. I really needed to hear that because I was getting concerned that Mr. B wasn’t progressing. He often described it as taking one step forward and 3 steps back. Now I know that there will be times like that but there will also be times when Mr. B will take many steps forward and take no steps back. I am SOOOO looking forward to those times!!!

One of the patients shared that he made an impromptu decision to take a cruise. He booked the trip and left two days later. He said it was the best thing he could have done and was going to do it again and go to Alaska. For many of us, this was a scary thing. People with a disease like cancer cannot get travel insurance. So if something

Don’t Worry About Every Little Thing

Spring morning burn pile = instant catharsis.

A week ago Sunday, I awoke early as usual. But the ordinary did not awake with me. Lights glowing on my computer’s printer spun in circles. My forehead was damp. Queasiness played with my belly. I closed my eyes and took some deep breaths. Outside, the wind chimes sang with customary sparkle. Their sweet sound helped me find my bearings. I opened my eyes and stood on wobbly legs. Steadying myself against the wall, I cautiously moved out of the bedroom.

Hot flashes, scratchy voice, nasal drip, eye irritation, bruising, nose bleeds, fatigue that floors me, highs followed by lows, dry skin (especially facial), burning feet, numbness that migrates nearly to my knees at night when prone, hairless legs, transient achiness in hips and thighs and one shoulder, cramping (occasionally severe) in my calves and feet, shortness of breath, arrhythmia, and now, something new: an episode of dizziness. Which of these is the cancer? Which is the chemo? Is old age a factor? Does it matter?

For much of the day, my blood oozed like sludge. The vertigo subsided but my energy took several hours to restore itself. By 3 pm I needed to do something, anything to assert my spirit. I filled the hopper of my spreader with fertilizer and treated the lawn to some early spring nourishment. The activity got my blood flowing. I cultivated a large garden space vertically, then horizontally. I sowed wildflowers. I tilled the soil once more to cover the seed. My strength returned and I hauled gravel to fill potholes in our driveway. Afterwards, I shelved the morning’s lightheadedness under the category of anomaly; a category that grows with each cycle of drug treatments.

Party Time! That’s my wife, Marilyn, on the right.

Still, this was no way to begin what was to be my final week of work. On Friday, March 30th, I retired from my job as Postmaster after 34 years with the Postal Service. I didn’t want a party but the community had other ideas. Wednesday morning, I discovered platters of food, desserts, and coffee awaiting my arrival. Throughout the day, customers appeared to nibble, reminisce, and wish me well. They brought wonderful gifts and cards containing heartfelt comments. Thursday and Friday, many more customers stopped by to share their hope for me to enjoy a lengthy retirement. I am feeling well loved.

Realistically speaking, though, I am not entirely in charge of the duration of this passage into the post-work world. Cancer has a way of distilling one’s expectations. That’s not a bad thing. In fact, it’s liberating to finally put your trust in the moment, rather than the future. My body is an experiment for which the mortar and pestle of oncology grinds its concoctions. Can science create a remedy? Perhaps, though I am not attached to the promise of curative solutions.

Spanky, seeking peace and joy in the moment.

Last week, while trying to make sense of my lightheadedness, I worried if the cancer, simmering in my marrow, was about to boil over. Perhaps, I thought, I should put in writing some final arrangements that are important to me. Such are the broodings of a cancer survivor. For better or worse, we find it difficult to stray far from our fears. Of course, this bit of worry from yet another side effect of my good chemo/bad chemo reality caused me to overreact. Most likely, I was simply dehydrated.

It’s been ten days since my world spun in circles. The episode of dizziness has not repeated itself. I am back where I started: no pattern of relapse, no final instructions,  just the usual suspects of anomalies. Yet, when oddities are all there are, then maybe anything is possible, good or bad. I’ll take that thought into retirement.