Hi Sharon,
I can hear what you are saying and I can hear what you are not saying… and it is your silences that I find extraordinarily hurtful and hard to bear.
Your Dad and your brother are your world… your side of the church wedding… and, up to your marriage and nuclear family, your entire support network. Perhaps this is why you are independent and always have been… because you have had to learn to cope for yourself, by yourself.. I don't know your history, and I'm not prying… but it sounds/looks as if their tardiness in coming forward is nothing new to you… and not something you expect or expected to change because of the extraordinary circumstances you find yourself in now.
From my own experiences and from what I have seen and heard on this board, there are some people who just cannot cope with disease and suffering and illness… they are afraid by association… that regardless of the facts, possibilities and probabilities, they might 'catch' it… at the very least it reminds them of their own mortality and they don't want to face that… so they will hide, make excuses and, to all intents and purposes, disappear.
If… if this is the case… and only you will know… then stuff them. Their hesitation, fudging and lack of energy will only cause you pain and drain your positivity… don't let them do that to you… tell them exactly how it is and tell them what you need… then leave it to them to respond… you will soon know which way their wind is going to blow…
Paul's Mum and Dad have made you theirs… they have laid claim to the care and support of Callum and Anya… together with Paul they have made your world theirs and deep respect for doing so IMHO. In a perfect world their contribution would be a top up to your Dad's and your brother's… but that doesn't look like happening – although I hope and wish with all my heart that it would/does.
Yes, you need time to be a wife… and a Mum… and a daughter (to the right people) – you need this because it is too easy to become a patient, a victim, another set of statistics in the clinic.
You sound as if you are all there 🙂 Your independence is admirable… but it also sounds like you have some remarkably caring and loving people around you… your carer for starters… and I wish you all the very best as you chivy the medics into treating you as a person not a unit… just ensure you treat yourself as a human being first as well.
Dai.
I remember asking my consultant about Curcumin/Tumeric a while back… it was a parting aside about diet and supplements in general following a quite positive session… and I caught something I can only describe as pity in her eyes… almost as if she was saying that 'despite our conversations about medicine and science you still want to hang onto the possibility of 'miracle cures' or 'cure alls' coming to rescue you'. She said that there were certain combinations that did not go together but if I wished to try complementary medicine or dietary supplements etc., then she would recommend putting them to the test 'after' medicine and science had had its go…
As Min so succinctly points out 'if these things worked no one would be taking chemotherapy or thalidomide'. Okay, they may help as a supplement, they may even complement standard medicine… for me I'll put them in the right pecking order… and trust in the big guns for now.:-)
Dai.
Thank you Sarah and Bridget,
I don't want to give the impression that I am going to raise a brouhaha when I go in tomorrow, I understand that the vast majority of the staff are dedicated to delivering a first-class caring service and that applies especially to all the staff that I meet on a daily basis… most of who I know by name and many with which we can discuss home, family and familiar problems… proper job problems, not medical or work related…
Tomorrow is about looking at my problem and getting it sorted… forget Velcade and MM treatments… I want them to consider the easement, investigation and treatment that they would normally apply to the problem presented… nothing more, nothing less… and I expect to leave with it either sorted or with a plan to have it so within the next 24 hours… the way it is at the moment means I have little or no mobility and that is not acceptable.
Dai.
Hi Min,
You are spot on regarding the Doppler treatment. God forbid that I croak over something as stupid as a DVT because a medic couldn't be fished waiting for me to arrive for what is nothing more than a 5 minute procedure… and in truth I don't believe that that is going to happen… but I'm sat here watching the Grand Prix, stuffed with Janet's lovely Pork escalopes and savoury pasta, followed by her home-made vanilla cake and ice cream and the supporting 'just so' cup of tea… with my left ankle and shin wrapped in cold compresses because I am doing localised impressions of the Elephant Man. 🙁
When I was last in the Doppler Technician was wandering around the ward with a hand-held machine and bag of accessories doing her job quickly and efficiently… I don't believe you need a doctor to carry out the simpler, hand-held scans… it could have been done, it should have been done… I was just unlucky that the Day-Case Unit Doctor was rushed off his feet and wasn't available to fight my corner.
So my Cycle ends with me feeling pretty good, as evidenced by my returning appetite and general well-being… but I am on day 17 of immobility because no-one (except the Day-Case Doctor) has had the gumption to examine and/or treat… preferring the dialectic of whether the condition is Velcade related or not… rather than just making it better.:-0
I have decided to make a stand over this tomorrow… I refuse to be marginalised and forced to suffer because of single-mindedness on the part of my consultants and the inability of the nurses (who know what needs doing but have no authority) to order scans and treatment.
It seems obvious to me that if this is not a DVT then there is definite fluid retention… several people left the Day Case with fluid retention medication but it was not offered to me… because my doctor was simply overwhelmed by his workload and didn't have time to sit and consider.
Whatever… tomorrow I will demand answers and options… calmly, considerately but firmly.
Thassorl.:-)
Dai.
All the very best for Monday Jet… once it is under way you will find your rhythm and measure and your coping mechanisms.
Internet connection is free, you just ask for the current code (the network in Fletcher is 'Netgear'). You will be well settled… post mephalan, stem cells returned etc., before you have to start 'coping'… I know it sounds cliched but the best advice I can offer is 'Go with the flow'… your flow, at your pace.
Try and stay in touch when you feel up to it.:-)
Dai.
Hi Gina,
How is your Mum getting on? Has she started her treatment? If so I have just completed my 4th Cycle – now on the 10 day 'rest' period… that is rest from treatment ie. injections but the treatment continues to work in your body so it is normally about 4 or 5 days into the 'rest' period before the side-effects of the treatment start winding down and your body starts rebuilding the blood levels (red and white cells), platelets, neutrophils (immune system) etc. helping to make your Mum ready for the next Cycle.
If I can help with any questions about processes and procedures I will… all medical q's need putting to your new consultant but don't forget the phone line on this site… Ellen and her team can give you much better advice than I on getting you properly connected with your hospital etc.
You really do have so much on your plate… a real mixture of people and events… you will need as much help as you can get… so don't feel embarrassed to delegate to your family… its not all yours to sort out on your own.
Good luck and keep being angry until you feel you are on the right lines with the right levels of guidance and support. 🙂
Dai.
Hi Ivan,
May I wish you a reluctant welcome to the board, I truly wish you were not here!
But, as you are, welcome. CDT worked very well for me and I was in a right mess when I started… with horrendous bone damage… but within a few months I was in Complete Response and ready to move on to the next line of treatments. 😎
Dex in such high doses can cause mood problems but they did not affect me at all on CDT as far as i can recall – I enjoyed the mood delights on a later/current treatment.
There are a great bunch of people here who will support and nurture you wherever and whenever they can and I am sure that true friendships will develop as you progress. Some of us are entering the latter parts of their journey, others mid-term and some, like yourself just starting… everyone has something to offer… through experiences, tips, blogs of particular treatments and often just a good old moan, groan or let-loose… all are equally valid in their way and you never know what is going to 'speak' to you. 🙂
All the best as you get going and we hope to learn more about Ivan as we go along… the rest we are already in touch with. 🙂
Dai.
Hi Gill,
Its great to hear from you, especially with the good news about Stephen. Did they source the infection?
I truly hope that this was a blip and that he continues to grow stronger and fitter with all the right lazinesses in his bloods that keep him ahead of the game.
I read an article about a Mexican footballer whose family have moved to Manchester to live with him because he thrives on family… and his Grandmother has sourced a great Mexican foodstuffs online store in the Uk, so she can make his favourite meal of breadcrumbed steak – the ingredients in the breadcrumbs making all the difference. It didn't spell out the recipe so I made my own and asked Janet to cook it for me… tomorrow or perhaps Monday evening hopefully… and I promise you that whatever the outcome I will not be hit because I have yet to find any edible substance known to man or woman that I have yet failed to eat… with only a few notable exceptions in the 'didn't like much' department. My biggest disappointment has been with Kalamari… I have tried it over a dozen times now and have yet to find it at all tasty… it is always bland, like plain tripe. Saying that I haven't had Janet cook it from fresh… hmmm.:-0
Breaded Steak first methinks.;-)
Really good to see you back on board, please pass on my regards to Stephen.8-)
Dai.
Hi Helen & Eve,
It was touch and go on Thursday… the Doppler Doctor threw a wobbler because his session had been extended… that's all there is to it as far as I am concerned (picked up from side-glances and looks of contempt from the nurses in Day Case although they are too professional to actually voice that contempt). I agree Eve, if I had been in it would have been sorted within the hour (as it was when I was in with my infection a couple of weeks back… the technician and Doppler Gun turned up at my bed… with the results in an instant). 😛
I will be asking for either a much quicker test (up to the Wednesday) or they might as well forget it because something will happen before the 10th… either by way of a DVT and embolism (been there and consider myself lucky to have the T.Shirt because it was a bad one) or the leg will sort itself out (it has eased slightly… but ever so slowly… I am hoping that it is the injections that are having a positive side-effect on the swelling and movement).
I have to re-iterate that this is the first time that I have been felt let-down by the City Hospital and I am slightly mollified by the fact that the problem has arisen outside the wonderful care and service provided by the superb Clinical Haematology Department. 😎 🙂
One way or another I will leave on Monday with some sort of treatment plan for my 'Rest Week' – the leg apart this Cycle has been an excellent balance of treatment and side-effects… I just hope the results prove it is a working balance.
My body says it is. 😉
I go on holiday back home to Pembrokeshire on the 3rd September… by hook or crook… and if it falls where I need to take a mid-treatment break then I feel (on this level of dose/treatment) that I will be able to cope and enjoy the holiday… an important one for me and my extended family (including 2 brothers, 2 sisters and all their partners… as well as myriad close friends and my eldest step-daughter and her partner who still live in Fishguard.8-)
Dai.
Hi Sue,
Thanks for your update, its good to see how others cope with their treatment regimes.:-)
I spent 4.5 hours in the Daycase Unit yesterday – the last 2 hours waiting for the single busy Doctor on call to get back to me on what other treatment to take home with me as well as the 5 day course of blood thinning Enoxoparin injections… I had left a note with my No.'s and was about to leave when he turned up and said 'nothing else'… 2 hours.:-(
At least I had my Velcade… so that's Cycle 4 finished. 😎
I've got to go back in for bloods on Monday… apparently a 5 day course of blood thinners can lower all the blood levels so they want to check… which suits me. My leg has eased… ever so slightly… but it is no so much an 'iron bar' as yesterday… but still a long way from normal. I asked if I should exercise or rest (I could hardly walk yesterday and today is barely better) and he said 'Yes' :-S … I wanted away so I smiled and left. I have decided on rest with a few stretching walks between the bedroom and living room.:-)
The most frustrating part of the day came earlier on where the Doctor had arranged a Vennogram on the leg for 2pm. It was cancelled at 2.10pm… the participating Doctor having to go to another hospital at 2pm…) I got the feeling from the nurses that he could have slipped me in – a buggy was waiting to whisk me away (I was actually strapped in) but his session normaly ends at 2pm so that was that – apparently I will be sent an appointment in the post – despite my 'busy' Doctor saying he wanted it done immediately – the first time I have been felt let down by Nottingham in 2 years. 🙁
My 'busy' Doctor was away from the Daycase and didn't know – which is why I had to hang on until 4.55 before catching him as I decided to leave.
Ah well… at least he did say it wasn't presenting as a typical DVT… although he would have been happier having that confirmed by the scan!:-/
Roll on Monday… with hopefully some easement on the leg in the meantime.:-)
Dai.
Hi Sarah,
I'm up and about earlier than usual today… trying to give the leg some gentle exercise – we are off to the Garden centre for a quick visit after lunch and then home and rest it up.:-)
I know the inherent dangers but it has been like this – and reported on every occasion – for the past 4/5 weeks… I am just determined that something happens tomorrow at my last infusion of Cycle 4 – as I have said elsewhere – some Enoxaparin/Heparin to take home and administer at the very least… I'll settle for prevention until i see a consultant on Monday am. 🙂
The nurses are keeping a close watch but they can't oreder up treatment… I need a doctor for that and I am going to insist on seeing one tomorrow.8-) 😐
Thanks for replying.:-)
Dai.
Hi Mavis, thank you for replying and your support. 🙂
I don't know why Dex has suddenly transformed… perhaps it can get on with its job quietly and more efficiently because it hasn't got to fight against the larger doses of Velcade… more harmony, less harassment… perhaps.:-)
I'm concerned with the swelling/discomfort in my left leg but hopefully I will get the medics to sort something out for the interim until I see a consultant on Monday – some Enoxaparin/Heparin injections to take home with me at the very least – to prevent anything nasty occuring over the week-end.:-P
Last infusion of Cycle 4 tomorrow… and if the side-effects stay about the same I will be a very happy bunny indeed. (Touching my wooden desk lightly… but firmly).
Thanks again.
Dai.
Hi Gill.
I had a week in hospital the week before last with a high temperature – they took 2 lots of blood culture (making 6 in all) but the high dose general penicillin anti-biotics they gave me sorted the problem before anything showed on the cultures. (A Doctor told me that there is a 90/95% failure-to-show in all blood cultures and that my case is the usual one).
I hope the same works out for Stephen and that he is home soon and back on the recovery track.
Best wishes.:-)
Dai.
Hi Peggy,
Does your daughter like yoghurt? You can buy a stock of those very small, petit yoghurts… you just peel back the lid, drop the dex on top and one good scoop picks them all up and they go down so easily… followed by a drink of water… you can then put the rest on your daughters cereal if she likes it… but given the size of the pot two should suffice:
Monday, scoop – lid back on & in the fridge – Tuesday repeat = 1 pot Thursday, scoop – lid back on & in the fridge – Friday repeat = 1 pot… hardly anything wasted and by far the easiest method.
Call me Mrs Beeton. 😀
Nice to meet you – all the best with your treatment.:-)
Dai.
Sounds like you had a great time on the rivers David and now on to St Ives, one of my favourite places – St Ives would be my first choice given that you are going to share it with family.
The holiday bargain was an added extra I must say, well done! Together with your Saints and Ladders holiday earlier this year you have done well! 😎
Looking forward to more details on your return… I have to wait until the 1st week of September for my week in Wales, sharing a house with two brothers and a sister and their spouses… all chill outs, meals, BBQ's and hopefully a hatbox full of music with my old friends – my consultant has promised to make it fit, regardless of wherever my treatment plan is at that moment… and I'm holding her to it. 🙂
Speak to you soon.
Dai.
