Hi Ann,
Welcome to the forum, I am genuinely sorry you had cause to seek us out but now that you are here I am sure you will find us supportive and willing to share the sum of our experiences. The first thing I should say is that you will never be guilty of the act of 'it's just me'… I assure you that will never be the case. Big things, small things, triumphs and small disasters, we have all been there before you and suffered the seemingly dire embarrassments caused by the side-effects of this illness… usually most often as a result of treatments and medicines rather than the disease itself. :-/
I hope that Yeovil has an experienced haematology team to guide and support you through the different stages of MM. There are a couple of regulars here who are treated at Taunton but I have not heard of anyone attending Yeovil in the past 4 years on this forum… so I wish you well at the hospital. 🙂
I am receiving my treatment at the City Hospital, Nottingham, with first-class facilities and a dedicated Day-Case Unit with 2 wards above for Haematology patients only. Saying that I have heard wonderful reports from General Hospitals with small haematology teams, so I wouldn't worry about the facilities too much… I'd rather have a dedicated team of medics any day over bright and shiny facilities. 😉
I came to Nottingham from Pembrokeshire in search of treatment and I can't complain too much but I used to teach at Yeovil College and lived at Norton-sub-Hambdon… (1988-92) a very happy time of my life and I absolutely loved the area. 😎
Remember, it's never a case of 'it's only me'… ask away and get the benefit of our experience… some way down the line, others just days or weeks ahead of you. Between us we should be able to offer practical advice about processes, procedures, treatments and medicines, domestic and life-lines affected directly and indirectly by MM – as well as offering a sympathetic listening ear for small woes or big rants. 🙂
Regards
Dai.
Hi Tanya,
I am so glad that you were able to be with your Dad at his peaceful passing… and that you had the support of your husband and your Mum-in-Law in the immediate aftermath. From your opening post of this thread it seemed obvious that your Dad knew that his end was near and the gift of flowers, for the first time ever, was his way of saying 'it is time'.
Hold on to your support and stay close to those you love… they will want to be there for you and you will undoubtedly need them over the next few days and weeks.
I wish you all the love you need at this time. 🙂
Regards
Dai.
Hi Tom,
Glad you are on the mend but take care to finish your AB course and don't go jumping in puddles… as yet.:-D
What you need is a [b]'Work Onesie'[/b] TM… [quote]Made of a rainproofed but breathable soft Nylon outer skin with a brushed Raylon inner, the [b]'Work Onesie'[/b] is extremely flexible, promoting an ambient skin temperature that keeps you comfortable inside or out, while working hard or simply relaxing, or taking a break with a hot or cold drink.[/quote]
Just an idea at the moment Tom but you design it, I'll produce the Bumff and we will practice for a joint presentation to the Dragons. 😎
Remember… 'Drugs and Alcohol Don't Mix'! Well they do but they will make you have a very deep and long sleep and you will be late for work.:-S
Dai.
Hi Jean,
After suffering 2 spontaneous fractures, small but painful nevertheless, one on on the very top of my left arm and the other about 10 inches away on my scapula, I was given a meeting with a consultant from a neighbouring and bigger hospital, QMC. I should say that by the time this meeting took place both fractures had more or less repaired themselves. This was no thanks to my medics who had ignored my complaints for nearly 3 months until I stamped my foot and threw my toys out of the pram… then they sent me for a simple x-ray which proved me right. (I had said from the beginning that I thought they were fractures and the medics said they were most likely muscular). :-/
Janet and I attended the meeting at our hospital and the visiting consultant turned out to be the Head Consultant of Orthopaedic Medicine from Queens. He was absolutely marvellous. He showed us a complete set of x-rays of my skeleton (I had a complete body scan of x-rays a week previous… 17 in all). He pointed out the latest 2 and 22 other lesions of various sizes and degrees around my body… including a quite large one in my right arm, an inch or so above my elbow, and another in my left femur, which he said had been flagged 3 years ago and was the most serious inasmuch as it was expected to break in two at anytime (prognosis 3 years ago). I told him that I was seriously surprised as neither area had ever given me an ounce of trouble. He laughed and said it was often the case… the big ones behaved and the small ones stung like buggery (his words) a bit like cuts. 😀
He said that if he was 10 years younger and freer to jump in and start zapping, he would have a field day on my skeleton… he would bring sandwiches and a flask no doubt. 😀
We agreed that there were so many sites that unless or until they started to bother me we would hold off on any treatment at all. He also said that if something went wrong on a more serious scale he would give treatment immediately, within 24 hours… and then amazed me and Janet by giving us a card with his private number. He gave us both a promise that he would carry out the work himself or if he was not available for any major reason, his 2nd in command would. 😎
So that's how we left it… I have 24 lesions of various degrees spread around my body of which exactly none are presently bothering me. Sometimes, either between treatments or when I am overtired and overreach myself, I get a short, sharp reminder by way of pain or cramp… I prefer the pain… the cramps can take a couple of minutes to wear off and often hang around for a day or two but I know what they are and by taking care and morphine I see them off. 🙂
Don't worry too much, Mike will soon learn coping mechanisms, through posture, working out what he can and no longer cannot do, along with the type and dosage of various painkillers. Let's hope that like me his lesions never develop into anything too serious… but if they do I am sure that the orthopaedic Doctors he is referred to will soon have him sorted and back on his beat. 😎
Regards
Dai.
Hi Tom x Tom (I'm a Thomas too but go by Dai),
I have seen that the symptoms are listed and a nurse mentioned a sheet last time… she asked me if I was given one and I said no… she said I would have one to take home but I never got it… I will ask for one next time I am in.
I don't think it is proper flu Tom, I don't have any of the other associated symptoms such as runny nose, temperature, sore throat etc, etc. §so §i'll put it down to 'Zometa Flu', being Neutropenic and possibly anaemic… and I'll take it from there.
DexDay tm – tomorrow, so happy days. 😉
Dai.
I had my 2nd infusion of Zometa last Tuesday, tagged on to my 2nd infusion of Bendamustine Cycle 4. I had similar side-effects to those described as fitting to "Zometa Flu' after the Ist infusion but nothing drastic and the side-effects disappeared after a few days. This time it has been different.
First off I have to say that I have no way of knowing if the way I have felt over the past 6 or 7 days has anything to do with Zometa… but… I have felt awful, breathless, heavy limbed, no energy, very much like the flu symptoms of old. I had a middling, annoying temperature of circa 37.5 for a couple of days but that settled down and for the past 4 days it has been normal. At first I was concerned (especially with the rising temperature) and was ready to ring in in once the temperature reached 38… but it never did. Our instructions are to ring in in our temperature reaches 38 or if we feel 'unwell'. I most definitely felt 'unwell'. But then I remembered the "Zometa Flu' post on here and reread and checked my symptoms against those remarked upon in here… and I had a perfect match… most definitely 'Flu' like.
I still feel slightly unwell but I am feeling slightly better… so I will watch and wait and see if the symptoms disappear. I hope that this is a 'one off' as I don't think that I could cope with feeling so ill after every infusion… although I am willing to accept that the way I feel is a combination of the chemo and the Zometa… but even so.
I can cope with almost anything, as long as I know what is causing it… and that it has some benefit. What I don't understand is why there is no warning of possible side-effects from the medics… surely they know about these side-effects? If not then I am going to point them out and tell them that they are recognised by a number of different patients in a number of different locations… they should be on the ball with these things.
Regards
Dai.
Hi Terry,
I remember you posting last year, as a football fan your name earned instant recognition.:-)
Yes, the waiting around is an awful time… the not knowing, the struggling to let go of the remission status and the reluctance to fully accept that you have indeed relapsed. If it is a blip then your relief will be profound… but if you have relapsed then you will more than likely allow yourself some time for bitter disappointment before facing the next step.
I won't bandy the words 'stay positive' but I will say 'be positive'. If it is 'doable', then leave your job and try something that is not only something you love doing but is also a potential business with a profit attached. Being positive is not just a state of mind for me, it is also a physical action, a task that calls for some get up and go… and your 'hobby' sounds like the perfect solution to keep your mind and body centred on moving forward… if you do that then all the other descriptions will follow in your footsteps.
I have had to face the dreaded 'Relapsed' status three times… SCT – Velcade – Revlimid and I can't pretend that it gets any easier. I suppose that the first, the SCT, was the hardest because there was no timescale attached to the remission… I only managed ten months, when the prognosis was three to six years. Even when they called it I was feeling great but a secondary cancerous tumour on my sternum validated their call… I could see and feel for myself that it was over.
So, for me, be positive and set yourself the task of only doing those things that make you feel happy… those things that allow you freedom of thought and actions, with the by-product of also giving you more time with those that you love. Stress is a bummer, it takes you to a place where you find it extremely hard to control your life… so if you can, kick every cause of stress in your life into touch.
I do hope that your PP rise is a blip… that would be wonderful… but if not then get angry, allow yourself the release from the stress of waiting and then carry out your work and personal plans in a constructive and life affirming manner. Your restoration of classic cars sounds excellent… make plans, draw up your business plan and move forward as master of your own affairs, not as an employee restrained by the dictats of a job. 🙁
I wish you well Terry, stay awhile and talk to us… there are some really good people on here, some with the same experience as you, others with experience of the treatments… processes and procedures etc., that you will need to address if and/or when, the time comes.
Regards 🙂
Dai.
I want to see how my treatment is going before making any plans. My daughter Amy, a professional singer, has been abroad for the past three years… Feurteventura, Majorca, Barcelona and now Cape Verde… but the good news is she is coming home for the summer season and perhaps the autumn/winter season too. Most of the family have taken advantage and visited her in the different sun spots but my two DVTs have ruled me out for flying. I had planned a drive, ferry, drive to Barcelona but my C: Diff did for that.:-(
I love the Lake District and the North Yorkshire Moors and like Eve, Scotland, of which I know little, calls to me. My problem at the moment is getting out of Neutropenia and getting fitter than twenty yards before seizing up. If I can get past those two barriers then the Lakes or the Scottish Highlands might be on.:-)
There is always home (North Pembrokeshire) and I would have to go a long way to find anywhere more beautiful or more peaceful… sans sun.;-)
Dai.
Hi Jo,
Like Helen, Eve and the others I too had been wondering where you were. I put out a call for Keith and was mindful to put one out for you but I wanted to wait another week to allow for holidays etc., with it being Easter and all. Then you tell us you have had pneumonia… I wasn't worried about MM as I am with Keith but you were struggling with something just as bad as MM, worse if anything because pneumonia can be particularly dangerous for us lot… but thank heaven for good old fashioned penicillin and your general state of health which can't be too bad all things considered.8-)
I am glad you are getting better and stronger and I look forward to you posting again. Eve is right about showing your husband how to post… he doesn't have to take part in the daily to and fro of news but it would be good to get certain news now and again, such as being in hospital with pneumonia for instance. I am one to talk… I have been meaning to show Janet the ropes… I have talked to her about it and she has agreed to do it but as yet we have never got around to it… so, a job to do over the weekend.:-)
Take care and time with your recovery.
Best wishes and lots of love 🙂
Dai.
Hi Jan,
I discussed the MUK 5 trial with my consultant again this last Monday and she was quite adamant that the trial had not yet reached Nottingham… this being so and with her stating that the Bendamustine needed watching because the reading was up slightly, makes me wonder why she did not raise the question of the 'Endeavour' trial.
Thank you… another point for tomorrow. 🙂
Dai.
Thank you one and all, your support is invaluable to me. 🙂
It wasn't cowardice but I didn't ring in today. The treatment has hit me harder than before over these last two days and when I started the day my Dex kicked in and I was snappy and short tempered. I apologised to Janet the first time… for snapping and for the snaps that might leak out during the day… Bless her, she just smiled and said that it was so unusual and not at all like me so she understood and would let any show of Dexitude to roll off her back. Perversely, knowing that, I managed to bite my tongue (literally on one occasion) and plug the leaks before they could escape… at least I think I did… knowing Janet she wouldn't tell me if they did. 🙂
Feeling grotty and with Dex on the rampage, I decided not to ring Sarah or Jenny, my lead nurses. I was afraid that I might get 'emotional' and while I am feeling angry I did not want them to feel that anger as first points of contact. I want to express my points of view with appropriate candour, leaving no doubts as to what I want from my call and I was not confident that my Dexitude would allow that… and God knows, they of all people don't deserve to be exposed to the raw face of a Dex fuelled angry patient.:-0
Janet has to be with the Grandchildren by 8am, so I will be abandoned to my own resources for the day… poor me. 😉 Actually, poor Janet… because she will have a mixed day of playing shop, Princesses and ad hoc stories made up by Edith as she goes along while trying to keep Alfie involved in something other than the iPad. One of those involvements will include baking for Edith's fifth Birthday Bash on Sunday… Alfie, who is seven next month, is a rather good pastry chef, having been trained by Janet since he turned five and he and Janet work well together. I can imagine them now, chatting away as they work. We bought him a subscription to Junior National Geographic for Xmas which he absolutely loves (so do we) and he will keep Janet enthralled as they bake. 😎
So a slight lay in, a gathering of my thoughts in writing and then I will ring in and speak to Sarah (Jenny, recently returned from maternity leave, doesn't work Fridays). I think it will do us all good for me to leave my points to lie on the table for the week-end… I don't expect any quick resolutions, I'd rather that they thought on my points and answered at least some of them by the middle of next week… the GCSF injections in particular… so that I can get my Neutrofils up in order to play shops and yes, Princesses and help Edith develop her made-up stories in between sessions on Football Manager 2013 and reading and discussing the articles in the latest Junior National Geographic. 😀
These are the really important things, things I am missing out on and I am angry that there may have been a way to ensure that I could enjoy them but for the sake of a little thought from my medical team. So gently but firmly with a follow-up email is the way I choose to play it. 😎
Hey ho. Sleep well… I'm here for the Dex friendly duration. 😉
Dai.
Hi Nicki,
We are so glad that Velcade has worked so quickly and so well for Sam. It did so for me, taking two cycles to get right down but it nuked a secondary cancer on my sternum as well so I'll allow it some grace.;-)
The next few treatments can be faced with a smile and you can face the preparation for his second SCT with a positive frame of mind with no surprises this time… you both know what's to come and while it is never easy, that 'knowing' will make the process easier on both of you.8-)
Best regards from me and Janet, we hope to see you around 🙂
Dai & Janet.
Hi Nicki and Hi Pete,
I am a great believer in Revlimid. I was on it from the first week in March 'til mid-November 2012. I picked up the C: Difficule bug in May and it played havoc all year although it wasn't diagnosed until late July (although my ex-wife, a senior care supervisor recognised the symptoms and called it in June). I was taken to another hospital following a temp of 39.8 and delirium in November and I was seen by a haematology Doctor on the ward. She said that it was no wonder that the Revlimid was treading water because the C: Diff being what it is, it was not giving the Revlimid the proper chance to absorb. :-0 I started the Revlimid on 125 Light Chains and finished in Mid-November on 525… 400 light chains in 8.5 months alongside the nasty little bug that is C: Diff.>:-(
The medics stopped my Revlimid because my platelets had dropped from 140 to 80 over 3 months and they were afraid that they might spiral out of their control. So onto Bendamustine… but I am keeping the Revlimid firmly in my sights… the C: Diff apart I felt good on Revlimid and 400 Light Chains in the best part of a year will do for me and I hope it does well for Sam Nicki. We met a woman at the Nottingham infoDAY a couple of years ago and she had been on Revlimid for 6 years and counting… Sam is young and fit and if he and Revlimid can form a good relationship there is no telling what they might achieve together. 😎
All the very best:-)
Dai.
Hi Rob,
I am currently on Bendamustine… I have had CDT, a SCT, Velcade and Revlimid. There have been times during those treatments where I felt as strong as a new born babe and I couldn't imagine ever feeling anything near 'normal' ever again… but then I turned a corner and within days I felt really good and the feelings of absolute fatigue and weariness from just a few days before were hard to imagine.:-D
There is still a chance for your Mum to turn her corner and reach a point of feeling reasonably good and pain free. The likelihood of her feeling on top of the world is very slim but I imagine that all she wants is to feel something like and in a position to be able to move about and talk to her loved ones without the weight of her world pinning her down. That should be a possibility if the medics can find the right treatment at the appropriate levels of dosage.8-)
I wish her well and you and your family the strength to help her bear her treatment and its success.:-)
Dai.
That's the way to go Andy… we are so pleased for you and Steph. Another decrease like this one from the next Cycle and you could be in SCT country… if they still have that on the agenda that is… I certainly hope so. 😎
Janet has bought me a bottle of double chocolate stout and I aim to enjoy it… perhaps over 2 days after next Tuesday when I come off the second week courses of anti-biotics (its a complicated regime). You remind me of a friend at college who was diabetic and he would deliberately overdose on sugar sandwiches in order to go out and drink copious amounts of beer to compensate. Several times we would get back to his house where I would inject him with insulin to get the proper balance (he gave me instructions on how, what, when etc.,) a dangerous game I thought but with MM and the related drugs the most you can expect for over indulgence is a deep and restful sleep. 😉 😀
Great news. 🙂
Dai.
