[alisonmarshallParticipant]

I too am about the same stage as you, are you taking the antibiotics? I found they made me very poorly and now doing the inhalation, this too made me poorly but it’s only once a month so time to get over it. I find my energy levels go up and down during the day and each day.  I love to set goals and walking is one of mine, each week I am able to walk more and use a fitness monitor to register that. Are you able to walk? The fresh air and being in nature are great healers and I can see how I’m improving on days it doesn’t feel like I am.

i think a positive mind is the most important thing, finding something that has improved, keeping a record of all you have achieved and of course, being kind to yourself, you might be doing too much. My psychologist stated the fatigue cannot be worked through and if you do you delay recovery, so maybe you are doing too much?

Good luck with your recovery, there is some useful stuff about wellness on the Macmillan site worth looking at too

 

[alisonmarshallParticipant]

It’s awful that you have had to put up with such poor care from registrar and locum, you have enough to worry about with the myeloma and the treatment. I too had a problem with registrars who knew nothing about the trial I’m on, I’d also had a series of hospital admissions so got an appt with my consultant outside of main appointments and one of tthe things that was agreed was to only see the 2 consultants that knew about the trial.  I can’t say I like my consultant, bearer of bad news and all that probably, but at least I see the same person each time so don’t have to go over and over. You need to ask if you are unhappy and as said, make a formal complaint, they don’t like that as there is lots of paperwork. Also go may well feel a referral to another hospital would be way forward.  Good luck with the treatment and yes, the helpline is a really good resource

 

 

[alisonmarshallParticipant]

Hi, what is DT PACE? I’m on the cardamom trial and looking for the research results, on carfilzomib and the usual steroids and chemo, my hair got stronger, nails and skin too. I have also coloured it with a root touch up, it feels thinner but not got clumps coming out as per stem cell transplant. I see some amazing women in treatment,very dolled up and beautiful scarves, but I’d still rather have good hair while I can.

 

[alisonmarshallParticipant]

Thank you for that Paula. Ended up on the trial as apparently too aggressive and fast to consider ctd and cardamom wouldn’t be available if I chose valkade. It’s been a real roller coaster with infections, pic lines, extra hospital and lots hospital appointments. Rather taken over my life but this month, 2nd, has started without any hitches, tho the effects of the treatment knock me aside for 4/5days of every week, leaving only 2 days or relative wellness. Today feeling I could get used to it, not so day after and days of treatment. Seems life has been put entirely on hold for now with only gentle walking and some yoga, art at home to keep me well. Friends have been great and some family too, but not all have reacted or with interest, to be expected I suppose. I will check out Facebook, thanks

 

[alisonmarshallParticipant]

I too have only recently been diagnosed and just starting my 2nd round on the cardamom trial. I had no indication other than repeated infections and anaemia, however the initial consultation and treatment was very fast for me, diagnosed mid sept, in treatment after all the tests by beginning October.  I too had a holiday booked and have been somewhat confused by the consultant’s thoughts on the holiday. My immunity is very low and going to a country that doesn’t have great hygiene with masses of people around seems like a bad idea. My holiday will be in the middle of my treatment. Some people have delayed treatment to have their holiday, or delay d stem cell transplant, only to find the benefits of the induction gone and having to start again.

 

Id definitely agree to take another person with you who can hold the info you are told and be aware that sometimes the nurses know more about treatment and effects than the consultant does, or so it seems to me.

I have cancelled my holiday to Sri Lanka, knowing I won’t get cover on insurance to go easily again, but your team will work with you to find the best solution for you.

good luck on your journey, believe that the first few weeks and months are the worst and it does get better

 

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