CarolZollo

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Viewing 15 posts - 1 through 15 (of 22 total)
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  • #94248

    CAZ1
    Participant

    Hi Phil
    I have a Medic Alert bracelet, which also comes with a small credit card info leaflet.
    My reason for using this system is that the bracelet clearly displays my diagnosis, stem cell transplant ,risk of GVHD ( graft versus host disease if given non- irradiated blood) and my allergies.(11 words total) with my registration number in the UK and the telephone number to contact Medic Alert from anywhere in the world.
    They hold all your information on a central data base, including Consultant and Hospital attending and General Practitioner. I chose this system as I hopefully will be spending lots more time in Spain and travelling to spend time with our daughter in New Zealand, and Medic Alert in known internationally.
    I work on the premise of better safe than sorry, but if you are not planning on travelling a local system might be OK for you.
    Hope this helps,
    Carol

    #87180

    CAZ1
    Participant

    Hi Susan

    Welcome to the discussion group. Although I haven't been on here for a while I can vouch for the valuable support that being able to air concerns with others can bring when facing daunting situations like you are.
    I have MM, had 4 cycles of CTD before my Stem Cell collection and transplant in April last year. Being 9 months 'down the line' so to speak I am now feeling much better than I have for a long time and realising that as I improve,that I had not been well for a long time before my initial diagnosis in September 2009.
    My philosophy all along has been not to 'fight' the Myeloma, it uses too much energy. I 'dance' with it ,and have learnt to listen to my body, so if I feel tired,I rest.
    The medical team that I have are superb, and you need to trust them. There is superb research that informs all the haematology teams on the treatment of MM and has enabled those of us treated to obtain ,hopefully, the best possible care.
    The time in hospital is daunting if you are not used to being a patient, but support of family and friends helps enormously.
    Listening to others who have been through it can help with forward planning, and be prepared to feel weak and need help on coming home and for the first few months, but it does improve. I had the added complication of a very slow to recover shattered leg from the year before to cope with as well, but can honestly say that with all that I feel better than I have for years.
    Be brave, and if it helps, the whole thing is very much like having a baby, you forget about the process that you have been through in the fullness of time and then can make the most of your newly reborn self.

    #86347

    CAZ1
    Participant

    Hi to you all and to Charlie(welcome to this lovely support group) for starting the discussion.
    Haven't been on for a while as am in the phase of recovering from stem cell transplant 14 weeks ago. It is an interesting journey but have learnt to take it slow, especially as the SCT slowed down the recovery I was making from a fractured leg last year (14 months ago!) but hopefully hydrotherapy and land physiotherapy will help sort it out.Muscle wasting caused by inactivity at SCT triggered off this lot of physio–so my strong advice is to keep as fit as possible during all the treatment stages.
    After the initial few weeks of being extremely dependant on my husband, who had to be signed off so he could be with me 24/7,I am now feeling better in myself than I have done for a long time, but that can lead to exhaustion by trying to catch up with everything I've been unable to do(within reason given lack of mobility with my leg). Last week I hit a low few days with no energy at all, but then had to remember I am only 14 weeks old, so had a few 'duvet days' to recover.
    On financial advice-I applied for DLA with the support of my Specialist nurse on 2 counts, the multiple myeloma and the disability with the slow progress of my leg-had to go to appeal but have now got both care and mobility component and backdated. It's only for a year initially but I fought it on behalf of all of us who have to live with life limiting conditions – who knows what tomorrow will bring in this dance with Myeloma? Have also met a new Spanish friend who's sister was diagnosed with Myeloma last week,so was able pass over my info guides for him to read as he was away from home–what a small world!
    Keep up the good work——and the dancing!!!
    Carol
    p.s. I now have my new hair growing-had to go and buy a baby hairbrush!!

    #89908

    CAZ1
    Participant

    Thanks Tom
    I don't know what happened and how my post got to the middle-gremlins in the system?
    Today feels better than yesterday even though I have to do the nebulizer at the Hosp this afternoon.Perhaps my cough might go as a result– we can only hope!
    Carpe Diem
    Carol x

    #89901

    CAZ1
    Participant

    Hi all,
    Just catching up with everyone! It's now 3 weeks since my Transplant. On Friday it will be my birthday and also my 1st month birthday! I've been at home just over a week and am feeling very weak – husband doing all the caring ( bit of a shock for him how much I need at present ) -however I can feel a slight improvement each day and the appetite is coming back very slowly.
    Only real problem I had was that our normal cancer ward with the isolation rooms is being upgraded so I had to go through the process on a 6 bedded ward.The Transplant itself was at Derriford in Plymouth and then returned by clean ambulance to my local hospital. I found it very difficult to cope surrounded by other patients with end of life treatment and associated other problems.As a nurse I couldn't help picking up all the nuances in conversations,as well as 2 infections needing Taxos treatment The whole thing made me feel very emotional.
    I am now on large doses of 2 antibiotics and need a Pentamidine nebulizer tomorrow.
    The choice that we made was not to delay the transplant as I was in serological remission,and to wait until after September when the ward is due to refinished could have put me in a different position. Anyway– all done now.I'm so glad to hear that others are out and about- gives me something to look forward to.
    I see my Consultant next week.I already know that my blood counts came up fast ( love my new stem cells,long may they work) and will catch up after.
    Thanks to you all foe continuing support
    Carol x

    #104408

    CAZ1
    Participant

    Hi Guys
    The trouble I have had with Dex has been the weight gain,especially around the face and upper abdomen (and it's not all chocolate related). Luckily that is going down now I have finished my CTD but the muscle atrophy is a problem especially as I am still trying to get over my broken leg from 10 months ago and need to be exercising before my planned transplant, and also need to be on the way to loosing some of the weight I had gained which might make it easier.
    The worst aspect of the Dex was the 'dump' days 2 days after stopping the tablets-they were renamed 'duvet days'. Complete lack of energy after being'high'on the Dex—-mind you I still have those days when everything is too much effort.
    It just shows that we all react differently to these drugs we have to take–!
    Carol

    #85193

    CAZ1
    Participant

    Hi everyone, I haven't posted on here for a while as I had been busy building up to my stem cell harvest 2 weeks ago,which then clobbered me for a week or so afterwards with just the enormity of the whole thing and the physical after-effects.Luckily my GP is good and put me on mild anti-D's to calm the nerves.
    Luckily the harvest was good with a great CD34 count,as I developed a mild temperature whilst in hospital overnight (needed a femoral central line to get the right pressures so had to stay in until they had done the count the following morning)and the decision had been made to remove the said line before we knew what the count was as it may have been that that had sparked the temperature rise.( I think it was just too hot in the hospital)
    I'm due to have all the pre-transplant tests next week—and then my support team are allowing me to go to Spain and sit in our house there for 10 days just to build me up–hurray!! I'll need to watch my head with the sun as now have no hair to protect it.
    Hospital admission booked for 16th April and Transplant booked for 18th -so fingers crossed.
    Look out for my family in Myeloma Matters when it comes out– they're all into fund-raising in a big way.
    Love
    Carol

    #92085

    CAZ1
    Participant

    Hi Linh

    Glad to be of assistance! I tried almost everyone recommended before found World First and agree with all your comments about their helpfulness. They even insured my mother-in-law when we took her Spain last Easter for a very reasonable amount.She had been refused insurance by other companies, just because she had got to the cut-off age of 85 and has glaucoma!
    Cheers,
    Carol

    #85530

    CAZ1
    Participant

    Hi Tina and everyone
    Sorry you had to join the 'merry' band of dancers with Myeloma, but hope you find,like me,that the support through the discussion group is invaluable.
    I start the build-up to Stem Cell collection this Friday coming,with planned admission, fingers crossed, for SCT on either 10th or 16th April. The good news is that,if everything can be achieved, I.e. Good stem cell collection, all the tests are done, and I manage to have a consultation with the transplant team , I'm being allowed to spend a week at our house in Spain before the transplant-something I thought I wouldn't be able to do until the Autumn at the earliest ! So,it shows that there are treats out there can make this illness copable with. Keep positive and keep looking forward.
    Good luck
    Carol Z

    #104373

    CAZ1
    Participant

    Hi Peter and Welcome,
    I too came off CDT 2 weeks ago and initially felt great, although I had an extra weeks' additional antibiotics to go due to an infection in a healing broken leg between cycle 3 and 4. However I am now feeling much slower,things are becoming a bit of an effort,I'm having difficulty sleeping (I found that I got a decent nights sleep with the Thalidomide, having had a problem with insomnia before starting treatment) and today bizarly have been very tearful,and I don't know where that came from!
    I think that it shows that we are all affected differently, and although we get used to the drugs that we have been on, there is going to be some sort of withdrawal effect. However if Diana is suffering from night sweats, and feeling weak my suggestion would be to contact the Consultant or the specialist nurse as they need to know. It may not be anything unusual as it sounds as though she was on CTD longer than me so therefore the reaction to stopping treatment may be different-but they are the people who give us the drugs and have responsibility for our care!
    Good luck, and say Hi to Diana from a fellow sufferer
    Carol

    #92150

    CAZ1
    Participant

    Hi,
    Many thanks for your replies Helen and Tom. I'm actually feeling quiet good at the moment, but in a funny way miss the Thalidomide from the CTD as it helped me sleep! In an odd way I'm looking forward to getting on with the rest of the treatment, but not the potential dangers that go with it. It's also good to be forewarned that it can take a while to get over the STC. Like everyone says,this disease is different for each individual,and is such a bloody nuisance!
    I'll let you know how I get on , although really I'd just like some time off so I can go and sit in our house in Spain and chill for a few days before the transplant, but have been told I can't go anywhere until months afterwards –so that's something to look forward to eventually, as well as all the other things I have planned to do. Have to be patient!
    Carol

    #92081

    CAZ1
    Participant

    Hi everyone
    Just to let you know that I have used World First for the last 2 years.They have given me an annual multi trip insurance ,but they do not insure for USA,Canada,and the Caribbean, and have been very reasonable with a declared myeloma,and a broken leg added on in the summer. At present we have put a hold on the policy as I am awaiting SCT so cannot travel for the foreseeable future, but they have covered me for 2 trips to New Zealand as well as lots of trips to Europe.Last year cost me £120—–a bit different to the £2000 I was quoted by one well known company! The company are based in Honiton and are very approachable on the phone. Hope this helps.

    #85189

    CAZ1
    Participant

    Hi everyone
    I ' ve been quiet until tonight! Christmas was lovely but hectic with all my lovely kids, their husbands, children etc– 4 boys under 4 and a half, but great and very noisey! .However Christmas day was a 'dump day' so a real effort, luckily they all cooked, and the food looked lovely but my right knee/ leg which I broke earlier in the year, decided to give way, and the left leg came out in sympathy.Unbeknown to me I had a cellulitis building and 4 days later ended up in hospital on IV antibiotics,what fun! Orthoepaedic teams do not understand chemo, but luckily a new and very nice Consultant decided not to stick needles in an imunocompromised patient' s knee and hoped strong antibiotics would work, following discussion with my Heamatology Cons and a microbiologist styled on something for a good 6 weeks plus. It meant that I had a two-week gap as I had a 2week course of antibiotics when I left hospital which would have compromised the CDT.
    I' m now on Cycle 4, have dates for build up to stem cell capture, had my last Pamidronate for a while, hurray as it makes my knee/leg SO heavy and stops me exercising, and have an aim for stem cell transplant mid- april. All the bloods are good,free light chains are down to low normal-hurray!
    Some good news, my NZ doctor daughter has lots of doctor friends, who have amazing stories of Myeloma survivors , in one case for 20 years, and they probably never knew of this website!

    #85464

    CAZ1
    Participant

    Hi Nicola,
    I'm the other Carol (I think there are 2 of us), and I echo the other comments about the poo problems with your Dad, Micky -not nice for either party involved ( I say that as a patient and as a nurse) and I hope they are all resolved now.
    On the fund raising side, my eldest son,Michael Jr ( cos his dad is Michael as well) decided off his own back, to set himself the challenge of undertaking Ironmam Wales in mid September around his 30th birthday , this consists of a 2.4 mile swim, 112 mile cycle ride,followed by a 26 mile marathon in 17 hours. He is aiming to do it in 12 hours and to raise £2,500 for Myeloma UK and is well on with his training for the event with lots of mini events and challenges on the way. The staff at Myeloma have been very supportive and now one of his sisters and her husband have decided to enter local races to build up the funds ,plus another daughter has joined the throng ( she did Ironmam,Wales last year before we knew that the Myeloma had become active ,so did it for another worthy charity)
    Good luck to you with the fund raising.
    The lengths in kilometres are 3.86/180/42.195

    #85364

    CAZ1
    Participant

    Hi bikerchris,
    I have been quiet for a while, but welcome you to this very supportive and exclusive band of people who dance with MM. This is not a text book disease and affects different people in different ways. The enormity of your diagnosis also cannot be taken in in one sitting- and can be very frightening if information is collated from the Internet-some of the American websites are really worrying, so you have come to the right forum. I have a superb Haematology Nurse Specialist who tells it as it is, is very understanding of both my and my husband's concerns, and has been very supportive- presumably you will have someone like that at Taunton. I am in the West Country too,but attend Torbay Hospital in Torquay.
    I am half way through my 4th cycle of CDT,finishing in a week and a half,and also have Pamidronate monthly,which plays havoc with my recovering broken leg for a couple of days! I have a date for my build up to harvest stem cells and a rough date ,if all goes well, of stem cell transplant in April.
    The advice I can give you is to stay positive, plan ahead for things you want to do,be realistic on the days that you can't do anything–the 'dump day's we call them after the steroids have stopped,and plan small activities.I get frustrated as I can't drive on low days,and am only really getting back to driving after breaking my leg badly 7 months ago, but short walks help and my kids have got me a turbo trainer for my bike so at least I can build up my muscles slowly.It's a roller coaster but the only way is up, Good luck!

Viewing 15 posts - 1 through 15 (of 22 total)