Tag Archives: challenges

POST 37: Don’t read this post if you’re squeamish!!!

I’m so lucky that I have now been in remission for 3.5 years, a timescale that I never imagined when I was first diagnosed, and certainly didn’t expect even after my Stem Cell Transplant (SCT) that I had in 2011. It is 5.5 years since I was diagnosed.

I honestly believe that part of why I have done so well since my transplant is because of maintenance therapy. I have been on a drug called revlimid since October 2011 as part of the Myeloma XI trial that I am on. Revlimid isn’t available to a lot of patients like this as you have to be on a trial to get it…it costs £000’s a month! Luckily I got randomised to it due to the trial, and the drugs company pays for me to have it until the day I relapse. Long may that be!

Revlimid is a type of chemo that is in tablet form. I take one little tablet every day for two weeks and then have two weeks off. When I had it for 3 weeks, it used to lower my neutrophils, which meant that my immune system was very poor and I was regularly ill. So over the past couple of years especially, my health has been fairly predictable and fairly constant. I am not ill so regularly as I used to be, and whilst I tend to take longer to recover when I am ill, I have generally been pretty healthy!

Unfortunately, just before Christmas, this all seemed to change. I was finding that I was getting cramping and needing the toilet more than before. (I told you not to read this if you were squeamish!). As the weeks went on, it seemed to get worse, and it was really affecting my life. I particularly remember the time on the train after a nice day out in London, where poor Nick and the kids had to sit on a platform halfway home, while I located the nearest toilet for over half an hour!

Eventually I realised that perhaps I needed to make it clear to the Marsden exactly what was going on…and needed to bury my embarrassment. It was far worse having to deal with these unexpected and frankly mortifying experiences….and there was a chance that it could happen at an even worse time! So I told my consultant, and they referred me for something called a SeHCat scan that monitors bowel movements. They were so good at taking it seriously, partially because they know that revlimid can cause an issue called ‘Bile Malabsorption’ where your bile isn’t reabsorbed properly, and partially because of my mum having had bowel cancer 4 years ago.

As is always the case, it seemed to get better after I’d been for the scan and so I decided I was going to get told that I was fine. In the meantime a good friend of mine who is at a similar stage post transplant, and also on revlimid, told me that they had suffered similarly and that there was medications I could go on. Anyway the long and short of it, is that I have now been diagnosed with Bile Malabsorption. Apparently people who have this, are often mistaken for having IBS and it is much more common than you know!

I’m pleased to report that since I started on the treatment (lots of huge pills!), I seem to be significantly better and the tablets are definitely doing what they’re supposed to be doing. Which is a good sign that it is nothing more sinister.

I know it’s an odd post to publicise and I did think twice about it….. it’s an embarrassing topic really. But I know that I just needed that push to get it looked at and now it has changed my life. I don’t have to worry about the nearest toilet anymore, and I know that it is controllable. The day may come where I have to cut fat out of my diet (might not be a bad thing!), but for now, that wouldn’t be enough to stop me needing the tablets and so I can just rely on them. So I thought that it might help someone else who is reading this blog with myeloma…..or for that matter, anyone else who is reading it who has general cramping and bowel issues.

40 Challenges B440 update!

Just a couple of sentences to say that I only need to complete 2 more challenges now! One will be my party on the 24th, and I’m also hoping to complete the; book challenge, necklace challenge and the birthday card challenge!

If any businesses out there were wanting to sponsor that challenge, please don’t feel that you can’t know that I’ve reached 40….I would love to keep adding to that total. And if you just want to make a little donation to help, the details are below!

40th-birthday

If you would like to sponsor me with my #40ChallengesB440, to support Myeloma UK and help make myeloma history, please either

go to http://www.justgiving.com/Deb-Gascoyne

or

text ‘DEBG99 £X’ to 70070

e.g ‘DEBG99 £10′ if you want to donate £10

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POST 36: So, So So Close!

Well, what can I say. I have 10 days until I reach my 40th birthday. It’s sort of come up on me out of nowhere due to being so busy with work, challenges, moving house and other personal bits.

But, I’ve completed 38 challenges! My God, it has been hard work. When I decided to do it back in November/ December 2013, and started to set it up, I didn’t for one moment think about how hard it might be. I just thought that it was a great way to raise money and awareness and that it would be fun at the same time. Hahahah. I most definitely have to thank Nick for getting me to drop some of the ones that would have been nearly impossible (like visiting 40 national trust properties in the year…hmmm, 1 a week practically!) and the ones that might have made me ill like staying awake for 40 hours.

However, whilst it has been hard work and has pretty much taken over my life, especially in the last 6 months, I am so proud of what I am so close to achieving, and I did actually have some real fun along the way too!

I think out of those challenges remaining, I might actually finish 5 more. I hope that I’ll have read 40 books, a lovely friend has sent me beads to thread with Rebecca when I get 5 minutes, I expect to write 40 blog posts by the 25th (even if I bore you in the process), it’s very possible I might get 40 cards, and I am DEFINITELY having a party for 40 people to celebrate my 40th! So I could get up to 43 B4 40….doesn’t sound quite so catchy though 😉 So where am I up to at the moment; well here you go!

Completed Challenges:

These are the challenges that are now complete;

1. Find 40 people to do one challenge each in aid of Myeloma UK – Achieved (www.justgiving/teams/40b440)

2. Climb 40 floors in a building – Achieved

3. Give up drinking alcohol,  and eating crisps and nuts for 40 days – Achieved

5. Run 40km in 4 days. Achieved 

6. Do a pub crawl round 40 pubs in 40 hours – Achieved

7. Eat 40 brussel sprouts in 4 minutes – Achieved

8. Get 40 friends to be sponsored to give up something for the 40 days of Lent (or equivalent).www.justgiving.com/teams/lent – Achieved 

9. Tell 40 people who don’t know anything about myeloma, what it is. Achieved

10. Get ingredients donated to make 40 cakes/ 40 cakes donated and sell them at a cake sale Achieved 

11. Persuade 40 businesses to donate a minimum of £40 each. Achieved BUT If you or anyone you know might donate, I am happy to do facebook and twitter shout outs and it would be great to keep the money coming in -)

12. Sell 40 roses in aid of Myeloma UK – Achieved

13. Do 40 lots of 20 second planks in one day (or the equivalent)!

14. Eat 40 types of fruit – Achieved

15. Iron 40 items of clothing in 40 minutes – Achieved

16. Try 40 different bottles of wine. – Achieved

17. Buy a complete outfit for £40 – Achieved

20. Get 40 shots  through the net of a netball post in 4 minutes. Achieved 

21. Get people to make 40 Myeloma Buddies Achieved

22. Get the revised Myeloma Diagnosis Pathway taken to 40 different GP’s/ health professionals. Achieved. This has kindly been taken to over 45 different practices, but it is a CRUCIAL challenge and it would be great to double the initial challenge. If you can take it to your GP, please let me know and I can email you the pathway and a letter to go with it to make it easier!

24. Get a group of people (40 if possible) to do a total of 10,000 taekwondo kicks in one day Achieved

27. Get 40 famous people to tweet/retweet about my challenge. Achieved

28. Make £40 at a car boot sale. Achieved

30. Learn to knit and knit 40 rows (minimum!) Achieved

32. Stay in bed for 40 hours – Achieved

33. A sponsored silence for 40 hours – Achieved

34. Make 40 cups of tea in a day – Achieved 

35. Visit a zoo and see 40 animals – Achieved

36. Make and sell 40 greetings cards. Achieved

38. Get 40 people to conga through West Wycombe Park – Achieved

39. Get 40 signatures from Famous People – Achieved

40. Receive letters from people from 40 different countries. Achieved

41. Sell 40 Myeloma UK trolley keyrings – Achieved

42.  Try 40 different types of cheeses – Achieved

44. Play 40 consecutive games of cards – Achieved

46. Travel at least 40m down a zip wire Achieved (160m!)

47. Pull 40 pints – Achieved 

48. Get 40 prizes for a raffle (if possible non-location specific please)  Achieved

49. Get 40 people to donate money to Myeloma UK instead of giving Christmas cards – Achieved 

OUTSTANDING CHALLENGES:

Ok, so the last 2 challenges need to come from the list below. Most of these have now been abandoned and I’m not sure I can ask anyone for more help apart from the Birthday card challenge.

4. Read 40 books – Hoping to be finished by the 25th January

18. Swim 40 lengths – Abandoned due to lack of time

19. Write 40 entries into my blog – to be finished by the 25th

23. Play 40 different sports – this one has been abandoned!

25. Have a party for at least 40 people – this is taking place in January

26. Get 40 people born on the same day (January 25th) to send me a 40th birthday card!!! This one is doing better than I thought due to amazing support on facebook and twitter. I have about 12 at my house already and a number more promised.  So if you can help or can persuade facebook or other friends to help, please do!! I even got a donation in one of them which was unexpected!

29. Look after a dog for 40 hours Abandoned due to lack of time – will just have to get a full-time dog now! lol. Thanks to all of you who offered to loan us and sorry I never got round to taking you up on the offer.

31. Stay awake for 40 hours – Abandoned as Nick doesn’t want me ill!

37. Drive 40 different cars – Abandoned due to lack of time

43.String a necklace with 40 beads/ stones.

45. Ride for 40 minutes on a horse – Abandoned but thanks to Clare McCaffrey for being prepared to risk her horse with me!

50. Get 40 people to sign up to the Myeloma UK sponsored events -(www.justgiving.com/teams/retailwalk) This won’t be achieved, but I would love more people to sign up to their events and raise more money. If, in any way, I have inspired you, please, please think about supporting Myeloma UK by doing an event for them. Every penny helps!

40th-birthday

If you would like to sponsor me with my #40ChallengesB440, to support Myeloma UK and help make myeloma history, please either

go to http://www.justgiving.com/Deb-Gascoyne

or

text ‘DEBG99 £X’ to 70070

e.g ‘DEBG99 £40′ if you want to donate £40

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Post 17 – Challenge 1 updated!!!

A week or so ago I changed Challenge 1 slightly. The idea of all of these challenges is to raise awareness as well as to raise money. It has slowly dawned on me that only asking myeloma patients to get involved, whilst possible, wasn’t necessarily achieving as much as I could be achieving. By opening up this challenge to anyone who would like to support the 40B440 Challenge, it will hopefully mean that friends and family will get involved and ensure that we make even more people aware of what myeloma is….people whose friends have perhaps never heard of this cancer before.

Today made me realise that I had made the right decision and also showed me how 40B440 has impacted people. Nicki contacted Imageme via the Facebook page to say that they were friends with one of my myeloma friends….and that the 40 Challenges has inspired them to get involved….they are going to do the 3 Peaks in 24 hours to raise money for Myeloma UK and the 40 Challenges. So they are now added to my list and we have reached a total of 7 people for this challenge. If you would like to support her, please take a look at her just giving site at www.justgiving.com/Nicki-Howard1. In time, I hope you will be able to see lots of the people involved by going to http://www.justgiving.com/teams/40B440…and hopefully I can add some of your names to the list too! We’ve already had people on ebay, and a beautiful quilt of many colours that has raised over £400!

It has made me reflect a little bit. Someone said to me recently that they hadn’t got involved in charity work since they were in their 20’s. That seems to be quite common and to be fair, until my diagnosis, nor had I really. We gave a few pounds here and there and sponsored people as and when they asked, but in terms of being proactive, I hadn’t done anything since I did a skydive for MIND when I was just out of Uni. I think that is pretty normal…life takes over and I don’t think anyone should feel that it is an issue…it’s just normal. But that said, it doesn’t mean that people can’t get more involved when the opportunity arises. So if any of you are those people….why not get involved now. It can be anything at all….a skydive, selling some things on ebay, holding a cake sale….absolutely anything! Whether it is £40 or £400, every penny is important. And to be totally honest, whilst of COURSE I would like you to do it for Myeloma UK, 40 Challenges B4 40, and Challenge No1, if you chose to do it for someone else, that is great too! Because the feeling you get for raising money for something that is important to you is amazing. And there really are many superb causes out there…

In the meantime, I am going to keep smiling that I have inspired someone else to get involved…..it is totally what this whole year is about! Nicki has got it….and I’m hoping that another 33 people will join us 🙂

Finally, I will be doing part of Challenge 10 (to make (or have donated) 40 cakes) and Challenge 34 (to make 40 cups of tea) on Sunday 8th June. So if you fancy popping in to say hello, we’ll be at West Wycombe Village Hall at the tabletop sale from 1pm till 5pm 🙂 We hope there’ll be some nice stalls, and definitely some chocolate brownie and a carrot cake or two to enjoy!

Image

If you would like to sponsor me with my #40ChallengesB440, please either

go to http://www.justgiving.com/Deb-Gascoyne

or

text ‘DEBG99 £X’ to 70070

e.g ‘DEBG99 £40′ if you want to donate £40

Leave a comment

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