Treatment update…..

So I am now in the second cycle of treatment (each cycle lasts for 4 weeks). Still no particular side effects, which is good, and I don’t feel tired so far, although I expect I may well do further down the line.

I have a blood test each week before receiving the injections, as they have to make sure the blood results are good before they can give you anything. When I went last week, the Clinical Nurse Specialist came over and gave me an update on my protein level. It takes a week from having a blood test to getting the protein result back, but anyway she told me that my protein level has come down from 27 at the end of November to 15 now, so that was good news!

This month the appointments are all at 3 o’clock in the afternoon, and by then things have quietened down a lot, and there is usually only one other person in the waiting room. I was slowly nodding off while waiting to be called for the blood test (it can take quite a while), so when I was called through my blood pressure was checked as usual, and yesterday it was nice and low, which is good, as usually it is a slightly high, which is mainly due to what is going on!

Two blood samples are taken and normally go to the lab via a pod system in the hospital, but the machine had broken down, so the nurse took the sample by hand to the lab instead, and the results came back more quickly than usual (it’s usually an hour for the result to come back).

I had a trainee nurse doing the blood test today, which was interesting. The veins in my arms are not particularly large, and they were checking my arms out for veins other than the one they usually use by my elbow. I felt a bit like a dog at the vets being inspected, it was quite funny actually. Anyway, there’s a good long one down my forearm, and several good ones on the back of my hands. They avoid anywhere under the wrist, as apparently they can be painful to use plus there’s an artery under there as well. They use a small needle on me (it’s called a butterfly), and it was interesting watching the trainee nurse using it, she got the needle in the right place but it was just above the vein, so the other two nurses were advising on her technique and how to slightly adjust the angle of the needle to hit the vein. They were very calm and helpful and there is clearly a technique to it. So that was my “guinea pig” moment of the day!

I was chatting to the nurse that give me the two injections, as she has to check out my abdomen for new spots to place them. As I am slim, I don’t have a large expanse of stomach, and she did comment that it was a lot easier when the patient carried a bit more weight as then there was more space to put the injections!

I have also booked a blood test through my GP to check my cholesterol level, as both my brother and sister have high cholesterol, so it seems like a good idea to get mine checked, as it hasn’t been done for quite a long while.

I will start receiving Zometa next month, which is given as an infusion. This is delivered once a month on a treatment day, and helps to protect the bones. I had to get a dental report first to make sure that no dental work is likely to be required, as this would be a high infection risk and needs to be avoided. Fortunately my teeth are all good (or at least as good as can be expected for a 68 year old with two implants and four crowns!).

I make sure to get plenty of exercise every day, either walking the dogs around the fields, or getting my lycra on and doing some online exercise. It’s important to keep my bones and muscles in good shape, and besides, exercise makes me feel good! Last week, we went to Birmingham and had a long walk along some of the canals, which was lovely. There are a lot of canals in Birmingham, so there is plenty of scope to go back and explore more, and there are restaurants and bars beside some of the canals as well, which no doubt will be buzzing in the summer time.

I am also getting support from a programme called iCan. This is a 5 week course which is for people with cancer, and consists of one hour sessions two days a week (Weds and Friday), in Shrewsbury. There are about 10 of us, and the session consists of exercises, mindfulness and general support. I think it’s mainly aimed at those people who don’t do any exercise at all, but even so it’s still good to be doing some exercises, it will build up each week, and there’s the opportunity to talk to the others as well.

On the third session, the group members each gave a short talk about themselves and where they were on their cancer journey. I seem to be the only one who is newly diagnosed, the others are all further down the line and in some cases up to 4 years. It was interesting to compare notes, and that is one of benefits of these sessions, being able to talk to other people who are having or had treatment. Unfortunately I am going to have to miss the very last session on 10th February, as that is my birthday, and I have plans!

I’m thinking on getting an electric bike for my birthday present this year. Peter and I went for a 4 day break to Madrid in early November, which was great and we had a lovely time. One of the things we did was an electric bike tour of the city, and I was sold on electric bikes from then on! So I have been to Trek in Shrewsbury and had a look at some bikes. The guy who was advising me suggested coming back when the weather is nice, and taking a couple of bikes out for a ride up to the Quarry, to try them out and see what I think. There are some new models coming out shortly which have a bigger battery, so it will be interesting to try some out………

So this past week we have had some snow, which is looks lovely but has made the local roads pretty treacherous. It was quite localised though, as there was no snow at Shrewsbury.

So that’s it for today’s post…………

35 comments

  1. Hello Sue
    Thank you for letting me know that you have myeloma. Nev and I hope your treatment goes well and you don’t get to many side effects. It is an honour to share your journey with you. Sending you our love, strength, and blessings. xxx

    1. Thanks for kind words, it is going well so far and no side effects, thankfully. Take care X

  2. It seems you’re doing amazingly well to date Sue, long may it continue. Interestingly Fred has Zometa every month too, and he has had for 4&1/2 years! Look out for each other!

    1. Does Fred have any side effects from the Zometa? Hope to call in again next week but I’ll let you know X

  3. This is great Sue. The meeting groups sound really interesting and good to speak to others in the same situation.
    Electric bike sounds a great idea! Take care and lots of love. Chris xxx

  4. Hi Sue, thanks for sharing the link to your journey. I did a catch up of past posts at a million miles an hour which I imagine is the speed you feel you are doing most of the time (except when waiting for results!) Guessing you go to Shrewsbury for chemo? They’ve been fabulous with me and despite my less than cooperative veins always seem to find a way. I was there on Thursday for the second of my 6 monthly Zolodex IVs which is a doddle after the chemo effects I had. Your drugs are different though and something I’ve learned is that we are all unique in our cancer treatments and reactions so I do hope you will fly through. I know someone local who has just gone through a stem cell transplant so if you’d like to be put in touch message me. Hope today is a good one and just keep on keeping on (while making good use of that electric bike)!

    1. Hi Chris, it’s a bit of a roller coaster ride, isn’t it? I go to Shrewsbury once a week and it’s all going well so far. I would be interested in talking to someone who has just had a stem cell transplant, so you can give them my email address if you like. I haven’t got the electric bike yet but am looking forward to choosing one! All the best, Sue X

      1. Will do. ps I had 2nd Zolodex 2 weeks ago with no after effects at all. First one I was very achy but it only lasted for a few days.

  5. Thank you Sue for the update.
    Take care and always here if you need anything at all x

  7. Lou received the blog and has copied me. I am so glad to hear about you and the update on your treatment.
    Glad you are doing well. Peter said you have a craft room at home now.
    I do too. I started quilting during Covid . It’s been fun. I used to sew years ago . We learned to sew in Junior High School making clothes etc. It is good to be creative. I’m glad you have a space to be creative in.
    Send pictures and I will too!
    Thinking about you!!!!!!
    Cousin Linda

    1. Hi Linda, I will add you to the email update list, so you will know when I have published a new post, and I will send you photos of my crafts as well. I find doing them very theraupeatic!

  8. Good to have an update. All sounds to be going well – talk to Ian about giving blood – his veins are well knackered!

  9. It’s it funny, l learned more reading the blog than from talking to you daily😂!!!!

  10. Thank you for sharing your diagnosis of Myeloma and journey through your blog Sue, such a good way to inform us all and also help others. Wishing you all the best as your treatment continues. I look forward also to further updates about the ebikes!

  11. Hi Sue
    I hope that sharing your story is a sort of therapy Nice to hear my home town of Birmingham has played a positive part If you need a companion for a n hour of karaoke on Broad Street I’ll be your wing woman Thinking of you Sue in what must be a rollercoaster of a ride 💕

    1. Hi Sandra, I do actually enjoy writing it all down, and my husband says he finds out more from what I’ve written that what I tell him !! It’s cramping my style having to avoid crowded spaces because of the risk of infection, but I still come to the pub when it’s quiet, so hope to bump into you there before too long. X

  12. Look forward to seeing you whizzing past !!! not whining as my comment says. Autocorrect can be a pain !!

  13. Glad to hear you are getting improved results and have a good network of staff and patients for support. Keep up the fun exercise. X

  14. So glad Thomas forwarded this blog to me. It really helps to put our minds at rest. Peter and Thomas speak often, but I only ever get half the story, so this is great! So pleased to hear things are moving in the right direction. Love Gail xx

    1. Thanks and I will add your email address to the group so you will know when I have published a new post. Even Pete says he learns more from the blog than from what I actually tell him!

  16. Thank you for this I have forwarded it to Gail we have both read it all.I have a lot to say but it just keep spinning around in my head and I can’t put it in to words. I know you are a strong woman how tackles adversity head on with your right hand man beside you. Regards and admiration Thomas.

    1. Right hand man does the shopping, sorts the dishwasher and the hoovering now. Cooking next maybe, if I can stand the strain of explaing How and Why …..

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