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.

Help

To cut a long story short – actually I don’t need to do that since it’s a really short story involving a couple of etsy conversations since Wednesday.

I have the opportunity for me and my Myeloma Buddies to maybe appear in a UK crafty magazine, possibly in the bottom left hand corner of page 82, and need to send in a pics of me and the Buddies plus 50-100 words about why I support the specific charities.  Which raises two issues – what to say and what photo of me to send ie, with or without hair!

There’s only a small fee involved – just kidding – no money is changing hands although I am still waiting to get my 561,000 bing bongs from the guy in Gambia who I sent my bank details to.  That might have been a mistake as I’m starting to think that might be the country where they need a wheel barrow to carry the coinage needed to buy a loaf of bread.

As I was thinking about it this morning for the first time really, I only got the email on Wednesday, I started thinking ‘I’ll have to count the words myself’ as I use wordpad on the netbook which is a small step up from using an electric typewriter with built in correction ribbon – but I don’t use it enough to justify forking out for Word.  Then I thought ‘If I type it in wordpress that will count the words for me’ and that’s when it dawned on me that if I did that I could publish it as a post and ask for your opinions.  So here it is…

In 2009 I was diagnosed with multiple myeloma, an incurable but treatable blood cancer.  It generally affects older people, 50% of myeloma patients in the UK are over 71, but is unfortunately increasingly occurring in younger ones.  I was 39.  It’s only in recent years that the most advances have been made in myeloma treatment and two of the charities involved only with myeloma in promoting research, providing information and offering support are Myeloma UK and the International Myeloma Foundation (IMF) – both of which are excellent.  I realised that I could FUNdraise (to quote the IMF) by using my crafty abilities and started making the Myeloma Buddies which is fun.  Although by the time I’d made 100 for Myeloma UK I did need a lie down at the sight of orange yarn.

There’s 127 words so feel free to add, subtract, amend or just generally comment.

Fortunately with regard to the photo – I don’t have to rely on B and his ‘The pic is adequate if you can tell who it is’ approach as I’ll be seeing Auntie Ann tomorrow.  Oh, I do have another question – make up or no make up?

I also have another issue but its okay I’m not asking for help on this one and its on a par with ‘Houston we have a problem’.  The peritoneal nurse visited yesterday whilst I was having dialysis to flush my line and change the dressing.  Whilst chatting I mentioned that Bud had kicked me in the side that morning.  It’s a little quirk of his to kick out his back legs whilst lying at the side of you, fortunately he only does it occasionally but you certainly feel it – which can be verified by B, Auntie Ann and Chris – all of whom have cried out when its happened to them.  The nurse said ‘You shouldn’t have dogs in the room when you do the dialysis’.  This is due to shedding hairs and skin – in a way similar to dandruff but with particles so small they are not visible to the eye.  Well I was planning on doing the dialysis at night whilst in bed – the very same bed that I and less frequently we share with Bud!  Maybe I do need help with this as I’m not going to be the one to tell him.

Rain Must Fall

Picture I started writing this blog to share my journey. To have a safe place to unload when I was feeling sad or lonely or overwhelmed. And it’s funny, but during the day I do pretty well, but late at night when I’m on the computer, then the tears start. I let myself think about the uncertainty of the future, where the money will come to pay for Mr. B’s medications, how will I cope as his health gets worse…plus many more things. I know these same things weigh heavy on Mr. B’s mind too. Last night he was the one crying about the cost of his blood thinner and I was the one encouraging him not to think about it right now. I said that we would find a way to pay for it and that it was necessary for him to live right now. Without the heparin, he could easily die from blood clots. I’m just thankful that the medication is helping him to feel better. My hope is that he can return to a better quality of life soon or at least start to do some of the things he enjoyed doing like taking his “grand dog” out for a daily walk. No, we don’t own a dog, but our daughter does and Mr. B used to stop over at noon and take her out for a walk while “mom and dad” were at work. She’s the sweetest dog and she has a way of making you feel good. I know that it would be so good for him to be able to take her for walks again.

And so I will need to make some hard decisions in the next month or so. It could mean that I will need to start looking for a full time job again to help pay for the medication. But I don’t want Mr. B to get wind of that. I know how much it will upset him that I’m thinking of going back to work. He will feel responsible and I don’t want that to happen.

When I was looking for a photo to attach to this blog, I did a search for pictures of rain to describe how I was feeling. And yet the picture I picked was this one and it didn’t make me feel sad, but rather made me feel good inside. Crazy, huh?