Go for it, Min… the inline skates! You just have to do it!
While I was ill, but before I was diagnosed, I began a list of Things I Want to Do… (the unsaid bit was "before I die"):
In no particular order:
1. Take part in a flashmob
2. Perform Playback in public
3. Have a compassionate conversation with my mum, without losing my temper or trying to be right
4. Visit Paris with a lover
5. Waltz in Vienna
6. Finally complete a knitting project
7. Have a ceramic studio and make ceramics in it
8. Not need to be 'employed' by anyone ever again
9. Have a dog
10. Learn to relax, possibly meditate
11. Spread happiness by regular random acts of kindness and generosity
12. Do what I love, want, need – forget the "shoulds"
13. Keep breaking rules
14. Learn to play the harmonica… maybe in several keys!
15. Take inspiration from friends
16. Get rid of the extraneous crap
I already have two harmonicas… I just need to find myself a teacher. I went to a music shop the other day to enquire if they knew anyone. They gave me two contact numbers to try, so I've made a start.
I've also started to get quotes for some fencing so my back garden is secure for when I'm ready to take on a dog.
I don't think I'll ever stop breaking rules… seems to be in my ornery nature. LOL!
Beautifully said and so wise and it reflects my experience of aging too, even at only 49!
I've so noticed a change in my attitude to all sorts of things, mainly money and stress, since I was diagnosed… even been accused of being Pollyanna. LOL! But I'm happy/content most of the time and that has to be a good thing and helpful to healing.
Here's another another poem that I like, which mirrors the above two. I have it in my bathroom, next to the toilet, for pondering purposes.
[b]If you have a dream[/b]
Don't wait for some distant day to come
It may be too late before you've even begun.
Not everyone will agree with all you decide
Be true to yourself foremost.
The only important thing in life is what you do
with the time you spend here on Earth.
Don't be afraid to follow your desires,
they are not silly or selfish.
Take the time and do what makes you feel alive
Leave the fears and regrets in the past,
for this is where they belong.
Don't cloud today with things that can't be undone.
You have no more control over yesterday or tomorrow
than you do the raging of your passions.
Do not quiet these dreams or quench your desires.
For if you do, your journey is ended.
You have only today to begin anew and follow your dreams.
For in the end all we have are our memories.
When the twilight comes to us, let there be
No excuses, no explanations, no regrets.
So funny, I really did cry from laughing… but I am on Dex just now!
I think you need to be careful though, posting this level of laughing matter… don't you know there's a lot of rib and back pain about???? Bloody hurts to laugh sometimes. Might need a health warning! LOL!
Thank you!
Good grief!!! Why on earth did they release your husband on the day of his transplant? I'm sorry to hear he relapsed so quickly.
I've been told I will have a 2-4 week stay in hospital and that you have to be ultra-careful of not catching any infections.
I'm curious about your title: "Would you risk alternative therapies alone?" Does this indicate that you feel frightened or sceptical of alternative/complementary therapies? You didn't explain…
I've used various therapies with differing levels of success over the years for much more minor problems… never had cancer before! 😀 I've also heard amazing stories of people changing their diet and using supplements and tumours decreasing or even disappearing, so I'm curious.
Hi Debs
I'm also on the Myeloma XI trial on the RCD treatment. I've mentioned my side effects in other posts, so won't bore everyone again. But if you (or anyone else on the trial) ever want to compare notes, feel free to contact me.
I'm being treated at Nottingham City Hospital, Centre for Clinical Haematology, under Drs Cathy Williams and Jenny Byrne. They and their team have so far been fab, very responsive, supportive, helpful, open to complementary therapies and mostly very human.
I'm also going to go to an Info Day here in Nottingham.
Hi Marion
I am also on the Myeloma XI trial on the RCD treatment.
When my girlfriend and I read the list of Very Common, Common, Uncommon, and Rare side effects on the patient information leaflet, all I could do was burst out laughing… I mean it covers just about every possible symptom ever!
The best bit was at the end of the VERY long list… "… and low calcium consequently leading to changes in kidney function, heart beat, seizures, and sometimes death. If any of the side effects get serious… please tell your doctor."
"Hi doctor, I'm just calling because I have a serious case of death!"
Sorry if my sense of humour is a bit on the dark side, but what else can one do?!
I have been taking it now for one cycle and really this has been the worst drug of the three for me. No problems with Dex at all, but with the Revlimid, I have dry mouth and skin, especially my lips chapping; shaking/trembling internally; severe clamp-like headaches; dizziness; runny nose; a bitter taste in my mouth which affects my appetite as everything tastes bitter/wrong; and tingling under the skin, mostly in my hands, feet and around my mouth and nose? a bit like being constantly very mildly electrocuted, or the feeling when a dentist?s anaesthetic is wearing off. To me it feels like when you shake a bottle of pop and it just waits there fizzing before you take the top off.
Having said that, it does seem to be getting better already. I reckon my body is adapting to it. And on the very positive side, my blood tests are already showing a noticeable improvement. My specialist nurse keeps reassuring me that the first 8 weeks (2 cycles of treatment) are the worst and it will get better. I got very miserable in the first couple of weeks.
I don't know if this is any help at all and I can't compare it to Thalidomide as I've not tried anything else, but while it's not been nice, I'm okay and glad it seems to be working. And the week off at the end of each 4 weeks feels great!
As we are all seeing, this disease is so person-specific that everyone will have a different experience, and I'm sure your husband will make the right decision for him.
I didn't know about keeping Revlimid in its packaging till you use it, so I put it in my drug box… Not gonna worry about that one.
I was also told, by the same person, that cancer hates oxygen and loves sugar. Anyone else got any unconventional wisdom?
I think what I get most support from and respond to most enthusiastically is not so much the medical and clinical details, especially as every one of us seems to have such specifically individual treatment and experiences, but the more psychological and spiritual aspects of our journeys, so thank you Gaye for sharing your personal revelation.
I am not sure if I am still in shock and denial, but at only 3 weeks in, I suspect that may well be the case. I do seem to be dealing with it all remarkably well after the initial collapse, so I guess only time will tell.
I wonder how much I am striving to be the person all my friends and family tell me I am – open, down-to-earth, ebullient, positive, strong, brave, etc. I think I am those things, but have given myself permission to be a totally scared, incapable, pathetic, child-like creature when needed.
Okay! In for a penny, and all that…
My name is Jet. I am 49 years young and only 3 weeks post-diagnosis.
I suffered with weird back pains throughout last summer/autumn and a rapidly decreasing appetite and disinterest in food (unheard of for me!). I got properly ill on Xmas Day, blood tests, then told I had severe kidney failure. A few weeks later I was whisked into hospital to treat hypercalcaemia (excessive calcium in my blood).
Then to answer the question of why I was hypercalcaemic, within 3 days I had a CT scan, bone marrow biopsy and 2 hours later, the MM diagnosis. Phew!!!!! I think I was lucky to have such quick-minded physicians who could diagnose me so quickly.
I am on the Myeloma XI clinical trial and am taking the newer Revvlimid, Cyclophosphamide, Dexamethasone combination. I am on week 4 of the first cycle, so no heavy drugs for one week. Hurray!!!! So far, my body seems to be responding very well to the treatment. My kidney function improved enough that I could take one dose of chemo in the first cycle. I am very happy with the Haematology team at Nottingham City Hospital. They have been very responsive, supportive and human.
I was living alone with my cat, had a job and lived quite independently. I have no children or long-term partner and none of my family live nearby, which is okay. However, I don't think I could have coped with the last 4 weeks without the minor miracle of my Dutch girlfriend, who arrived to spend a year in England two days after my MM diagnosis – the arrival was planned, the illness was not!
It was not what either of us was expecting, especially at such an early stage in our budding relationship, but so far she has become the most capable, supportive, caring, sweet, sexy, argumentative, grumpy, loving and mostly very funny carer that I could ever ask for. Let's hope she doesn't get fed up with my low energy, aches and pains, weird reactions to medication and quiet moods.
My short-term contract job as a Support Worker on an employment scheme came to an end on 28 Feb and I am now in receipt of Employment and Support Allowance. I have a huge form in fornt of me to apply for Disability Living Allowance, have applied for a Blue Disabled car badge and have received my medical exemption certificate for prescription charges. I am now officially a disabled person with a shortened lifespan. How quickly one's life can change around!
I seem to be approaching this whole experience as just that… an experience, just part of life's unexpected journey. And I never knew that I would respond in this way. It's quite a pleasant surprise to find that I actually am the positive, down-to-earth, open person my friends and family tell me I am. I don't know if this is still part of the shock, or maybe denial as suggested by Gaye, but anyway for now, that's where I'm at.
If anyone is interested, I decided to keep a blog about my experiences of living with myeloma. It is mostly a therapeutic tool for me, but I hope it's helpful to others with and without the disease: http://jetblackliving.wordpress.com/
Nice to meet you all!
Haha! Thanks for that little distraction. I'm well impressed with my skills… Only Bucharest, Talinn and Vilnius scuppered me, but all of Western Europe I was within 10 miles. Yee ha!!!
Hello Ruth
That sounds like such a terrible thing to deal with and I can appreciate how alone you must feel with it, separated from someone you clearly care a lot about and has such an impact on your and your children's lives. 29 is unbelievably young (and this coming from a 49 year old!).
I don't know if it's of any help, but the Haematology team at Nottingham includes two specialist nurses, who are there for clinical purposes, but also provide support for patients, carers and family. My girlfriend comes with me to all my hospital appointments and has been able to ask questions (even silly ones) and understand what is happening as I go through it, which helps to allay her fears as well as my own.
It may be worth asking your ex if you can contact one of his haematology nurses for support, to ask questions, get answers and maybe quell some of your fears, or at least understand what it is you're/he's facing. Other than that, you can probably get support from the Myeloma UK organisation. I don't know who or how, but I'm sure you'll find information on this website.
When I was first diagnosed, only 3 weeks ago, I experienced absolute terror and shock, similar to what you may be experiencing. I hope it's helpful to hear that already I am in a different place, adapting to the medication and feeling much more accepting and curious about what's happening to me. But I don't have children or any dependents, apart from a cat – who has become very cuddly and in her own way provides loving support too.
I think it's important to let friends and family know what's happening and how you feel and let them support you at this time. Make some time for yourself to take time out away from children and responsibility, reflect on what's happening and have some fun.
For me, the realisation that we never know what life is going to throw at us and that this is just part of a curious journey is helpful, but I don't know if that will work for you, or maybe not just now.
You may also find it helpful to go to an Info Day, where you can meet other partners, carers, patients and experts. I'm totally new to this too, so I don't have answers, just learning it all myself, but I wanted to reach out to you so you don't feel quite so alone.
As one of my friends said (who is recovering from a heart attack at age 40, with a 10 year old son), I wish that when you are at your most afraid, you will feel that you are ok, and life is ok, and everything happening is ok.
Jet
Hi Jon
Like you, I am under 50 (will be celebrating, all being well this July!) and was only diagnosed on 4 Feb. I think I was very fortunate in that I only had a few months of strange back pains and loss of appetite/nausea (caused by hypercalcaemia) before I got quite ill and couldn't eat at all on Xmas Day. It took them a month to do a blood test that checked calcium levels, and thereby find excessive calcium in my blood, but once they got that, I was whisked into hospital for IV treatment to lower the calcium, a CT scan to check my bones, bone marrow biopsy and diagnosis the same day! It was all so quick that I didn't have time to think about it.
The minute I was diagnosed, I was put on Dexamethasone the same day, which was way too much fun. Flying high and wild crazy creative, exciting ideas about all the things I was going to do now I didn't have to work any more. LOL! I've come back down to earth since then.
I am also on the Myeloma XI trial on the RCD treatment. Unlike many on here, I quite like the Dex. It makes me feel less tired and achey, my skin and hair feel better, I have more energy and a much more positive attitude – lots of laughing and slightly hyper. The one I struggle with is the Revlimid, which makes me shake and fizz, and makes everything taste nasty, although I think I am adapting to it more every day. It is still only 3 weeks into treatment, so very early days.
I couldn't take the chemo at first as my kidneys weren't in good enough condition, but last week they gave me a single dose for this cycle and I will be on it properly for the next cycle. I was lucky to have no sickness or nausea from it.
You and others mention a spreadsheet for taking the tablets. I have been lucky with that too… The nurses at Nottingham have already created a table with coloured squares for the different tablets, so it was made easy for me. I also found it helpful to buy one of those tablet boxes and once a week, I have a little ritual of putting my pills into the individual sections. I don't know why, but it makes me smile.
I am at Nottingham City Hospital and think I have a great team of doctors and specialist nurses, who are empathic and reassuring and listen and answer questions. The nurse even helped me complete the form for a blue disabled car badge for me. They have reassured me in terms of side effects and general well-being, that it is hard for the first 8 weeks (2 cycles of treatment), but it does get better. So I am just going with the flow, but with a positive attitude, like yourself.
I come on the forum every few days, but to be honest, I think I want to put most of my energy into the other things in my life than getting too engrossed in talking about my disease. I hope that doesn't offend anyone. We all need to deal with our disease in different ways. I am so glad I don't have dependent children or a complicated work situation. My short-term contract ended yesterday, and I am entitled to ESA, so I can be happily unemployed and lazy on bad days and hopefully do something useful in the world when I have more energy – volunteering, creative or anarchistic!
I have so far avoided thinking too much about the stem cell transplant, but am feeling less terrified about it now than a couple of weeks ago. I am trying to approach all of this as just more life experiences, even dealing with pain, fear, depression, boredom, aches and fatigue. I mean there are no guarantees in life, are there? I think most of us go around trying to create security, whether through family, job, money, housing, etc. But anything can and does happen in a life… I mean, there's nothing to say that despite having MM, I won't get run down by some crazed driver next week! 😀
Has anyone else been to an Info Day? I have booked to go to the Nottingham one on 9 April.
Also, if you're interested, I am writing a blog about my experience of living with myeloma. It's mostly for personally therapeutic reasons, but I hope it's helpful to others too: http://jetblackliving.wordpress.com/
I love the idea that this group of people is anarchistic… Not seen signs of it yet, but love the idea! LOL!
You can get one from Nicola Ewart at Myeloma UK: http://www.myeloma.org.uk/fundraising/fundraising-news/500-patient-diaries-sent-out-since-launch/
You can place an order to obtain these diaries (free of charge) for your patients by calling Nicola on +44 (0) 131 557 3332 or email: nicola.ewart@myeloma.org.uk
Your specialist nurse/consultant will probably also be able to give you one.
Good luck!
Very interesting to hear from others, but I have a very different experience from most, it would seem. I love my Dex – it makes me feel almost well. I managed to drive an hour from Nottingham to Sheffield to visit a friend's ceramic exhibition yesterday, had a good chat with her and visited a wood firing taking place on the way back and then ate quite well and "tastefully" in the evening.
My hair looks better, my skin feels less dry, I have more energy, less back pain, possibly even less tingling, less anaemic breathlessness… and I feel happy and funny. Lot of laughing yesterday. It also makes me unable to sleep, but it's not a bad insomnia and I have a Facebook friend who is often also awake, so we chat and I catch up with emails and my blog. So, all in all, I quite like the Dex, so far.
For me, the nasty stuff is pretty much all down to Revlimid. Good to have a word for the tingling… peripheral neuropathy. My mother experienced that earlier last year, when she had some difficult health issues and I think my uncle seems to be having it too, for some reason. So it seems to be the "in thing". LOL!
I'm hoping as time goes on, I can find a rhythm with it and be able to plan activities to go with my drug swings. So, do exciting big trips on Dex days and chill out and sleep loads at other times.
I'm wondering what I'll feel like on my week off everything… well, everything bar the paracetemol, ciprofloxacin, aspirin and lansoprazole! LOL! They're all my "benign" medications… all pretty, white and friendly!
I'm hoping the fizzing will go and I will want to eat good, tasty food and hopefully lots of it, to put back the way too much weight I've lost. Bottom – gone! Cycling calves and thighs – gone! Breasts – diminished! Clothing – hanging off me! Boo hoo!
