Hi Mary and Charlie,
If you will allow me I will echo Jean's 'Well Done'.:-D
The important bit is now over and I encourage you to take things very, very easy and ensure that you keep germ-laden family and friends away… however much loved and however much accent there is put on 'it's only a very small sniffle'. 😛
Don't overdo things and Charlie, listen to your body… and Mary: learn to lip-read what his body is really saying.;-)
Enjoy your recovery, both of you.8-)
Dai.
Your soulmate, your lover, your best friend… your everything.
My heart goes out to you,
Much love
Dai.
Thanks to all for your replies of support and concerns… even if my vanguard actions are to be a guidance for treatment. 😉
I didn't get to sleep until it was almost time to get up on Tuesday morning… so all plans for clinic attendance and blood lettings were abandoned for the day… during which most of the day was claimed for sleep, which Janet encouraged and I enjoyed. 😎
My new Doctor friend phoned this morning and we agreed to postpone the blood letting until next Monday at the Day-Case clinic. I had phoned the dental clinic at Queens yesterday afternoon but their was no-one available in authority to speak to and I was told to phone in after 11am this morning. Doctor Friend told me to leave that to him… I told him the we were having 2 of our Grandchildren all day on Friday (7.20 am to 6pm) and that Janet had her own dental appointment at 3.20pm on Thursday… so if he could find us a suitable appointment taking those factors into consideration then that would be excellent. He phoned back within 10 minutes to say that he had fixed my appointment for 10.20 tomorrow am… brilliant. 🙂
You may be quite right about his keenness to try out his skills David and he certainly showed his organisational skills to me in this matter for sure. 😎
Happy Chappy 😀
Dai.
Hi Tina,
I am sure that the emotional side of dealing with such a dreadful disease such as MM comes out in differing ways dependent on the emotional make up of the person.:-)
I don't want to die… not like his… at the discretion of an unforgiving disease that lays us bare to infection or literally strips us inside out, from our plasma cells to the very bones of us. However well we respond to treatment and however long we get in remission from the various treatments available to us, there is still the impending end that goes along with the 'terminal' part of MM. Of course we are cheerful and cheery, for ourselves, our loved ones and friends and because we know, that however we meet our end, it is not going to be today, or tomorrow… it may in fact be years before we reach that stage where we have to start saying our farewells. Knowing that, it would seem pretty silly of us to go around shouting 'woe is me' and weeping and blowing our noses on our best friend's doilies.;-)
But there are times when our emotions, especially those that deal with fear, creep up on us and take us by surprise… and in response we weep… and sometimes even wail. It's OK… its allowed. While I've always been in touch with my feminine side, these days I don't need much excuse to blub at films, or weep with joy at a kitten being used as a floor-cloth by a dog on YouTube… and at those times when I get overwhelmed by my lot… my bad luck at getting the short-straw in the guise of MM.:-P
Its OK, its allowed, its alright.:-)
Tell a friend or a loved one… or us.8-)
Dai.
I had seen this thread and meant to reply, giving my heartfelt congratulations to the both of you… but I forgot, so I didn't… but now I have. x8-) x8-) x
Dai.
Hi Scott,
You should be well on your way by now my friend. All best wishes for a smooth ride, keep in touch as and when you can.8-)
Regards
DAI.
Hi Jill,
I too am glad that your Mum is getting a reprieve from treatment… I am sure that it will do her the power of good. I went from Revlimid (which I still feel is an option I can return too) to Bendamustine, which, at least for me, was the worst treatment I have had to endure during my MM journey. 😛
The trouble with Bendamustine is that you need your Neutrophils to be quite strong before you start treatment, because they get knocked for six. I had 4, one month Cycles of Bendamustine, of which 3 were spent being Neutropenic and the other barely out of trouble. This caused 2 sessions in hospital due to infections, 2 of the infusions at half strength and 1 which had to be cancelled. That, and the fact that it made me feel quite ill, made me happy when the medics pulled the plug on it. It worked very well at the beginning but then caused a relapse due to the inconsistency of administration. Mind you, given the individual nature of our reaction to treatment it might well work perfectly for your Mum… but let het enjoy her rest first.:-D
Dai.
Hi Maureen & Ian,
I know we joked about Ian racing around the bed and getting into bed at different sides ect, but now we are into the real world and two steps, however aided, is real and tangible progress… real enough to start allowing Ian the chance to come home.8-)
It will come and soon enough… soon enough for you to get a lot organised and set up to allow Ian the best chance of serious progress once he gets home.:-)
I am delighted for the both of you… well done and the best of good fortune in all your home-bound endeavours.:-D
Dai.
Hi Jill.
Before starting treatment for MM (I was diagnosed with 'Secondary Bone Cancer – Primary Unknown' 14 months previously back home in Wales – but that's another story. I was tested for MM but they only looked at my PP's. They needed to carry out a 24 hour Urine Test… but that was overlooked and MM was dismissed. It wasn't until I made a break to Nottingham that I was properly tested and diagnosed as having MM.:-)
At the start of treatment my Kappa Light Chains were at 3,800, which was considered quite high but they dropped to 0 after only 3 Cycles of CDT… I had 4 Cycles altogether before being declared ready for SCT preparation.8-)
Before my current treatment (Velcade MkII – I had previously had 6 very successful Cycles of Velcade in 2011, so without any further available treatments we plumped on Velcade because of its previous efficacy) my KLC's stood at 3,087 and they dropped to 380 after one Cycle and stand at 125 after Cycle 3… up slightly from Cycle 2's 39.
Your Mum's 10,000 KLC's seem excessively high to me but if the medics are not too concerned then I would tend to go with the flow… there are other factors and ratios to take into consideration and they must be holding things in place as far as I can see, But in my case, offering any sort of advice apart from personal experience, would be highly dangerous – so if I was you I would ring Ellen or one of her stake and explain your concerns… I am sure their advice will be telling and reassuring.8-)
Regards and best wishes
Dai.
Hi Tranka,
First things first… follow Dick's excellent advice and contact the Myeloma Nurses on this board… there is nothing here that they have not encountered many times before. 🙂
Secondly… If she is being stubborn and getting angry at you and your family then it is time for a bit of tough love. Read out to her the advice you get from the nurses and from this forum… the nurses have the medical knowledge and we have the personal experience. 😎
Kidney problems, common with MM need to be avoided and if she doesn't drink then she will more than likely develop kidney problems. Just 2 days on the 3 Litres per day and she will start to feel very good indeed. Tell her that everything you are doing is driven by concern, care and love and she has to learn to accept that loving care and concern or she will end up in hospital or worse. It is plain silly of her to shun your efforts when she plainly needs your help. Be assertive but don't get angry yourselves and don;t coo and fuss… that will make her cranky. 🙂
Most of her problems that I can see above are due to her small liquids intake. She should be drinking at least 3 Litres of liquid a day. It doesn't have to be plain water (although that is very good for her) but fruit juices, tea/coffee (decaff is best) squashes, fizzy drinks etc., whatever she feel like as long as she achieves the 3 Litres spread out throughout the day. 😎
Take Dick's advice and write down all your points clearly… that will help you when talking to the medics and other willing helpers like MacMillan Nurses who can help with practical advice and a small bursary to help with initial expenses.:-)
Welcome to the site, although we wish you didn't need our advice. Tell us your name as first contact, your Mum's name and where she is being treated.:-D
Regards and best wishes 😎
Dai.
[quote][b]My hospital now allows patients to log on line to see all of your patient notes, including details of all blood tests and clinic dates. They are trying to sort out releasing information about pp levels and light chain levels. [/b][/quote]
Wow Jan, I am seriously impressed by your hospital's forward thinking and freedom of personal information. 😎 😎 😎
Where do you attend? 🙂
Dai.
Hi Dave,
I am truly surprised that your consultant is happy to let you go back to work after less than 3 months post SCT. I was told to take it very easy for 6 months and then ease my way back into society.:-D
The norm seems to be between 6 to 12 months for return to full-time work… and even if that is a flexible maxim 3 months seems positively silly. You may well look the part and your bloods may say OK… but they are still very immature cells that are producing that blood and you don't want to crash and burn after a few weeks back at work for health and professional reasons.:-P
I wish you all the best but I would take further advice before committing to full-time employment (I am sure that that advice is on the way).;-)
Dai.
Thank you, thank you, thank you all… diolch yn fawr i chi.
Everybody turned up, plus a few unexpected nieces and nephews but very welcome all the same. The weather was overcast but behaved except for a few gusts of wind that threatened to take the gazebo for a sail but they blew into nothing and everybody carried on regardless.:-) 😉
The Swindon branch of the family turned up early (10.30… the official start was 1pm) but they took over the kitchen and tea, coffee and frying pans were utilised. My youngest daughter Amy and her partner Ludo followed them in and within minutes I could hear the lawn mower in action, By 12pm there were 22 of the clan onsite, each spending time catching up with family members that they hadn't seen in yonks. By 1pm there were 32 of us on site and talk and laughter filled the garden.8-) 🙂 😀
There was food and drink aplenty as the family each produced their shared lunch offering and we started eating at 2pm. There were many (macho males) contending for the post of Chief BBQuer but it was a poor contest once my youngest brother threw his hat into the ring. Stephen soon took control and to be fair he threw everything in to quickly produce Hot Dogs and Beefburgers of an excellent standard. He fed the children first (Hot Dogs, then the women and finally the men. The last to eat were his pretenders to the throne.) 🙂 The BBQ'd food looked really delicious but somehow they seemed too bypass me… so I settled for my sisters Chilli and several sorts of salads, including a luscious rice salad and some spicy couscous.:-D
Modern technology to the fore, there was a constant whirl of cameras, smart-phones and iPads, small gatherings of brothers, sisters, grandchildren, cousins, aunts, uncles and miscellaneous beings. The photography culminated in a full gathering of the complete family and many shots of cameras set to automatic.
I amazed myself by moving from group to group before being collared by individuals who wanted a quiet word… that was touching, especially one of my nephews who simply wanted to say thank you for inspiring him all his life. He had driven 3.5 hours from South London, stayed 3 hours and then drove back with his lovely wife and their baby. He thanked me for showing that (unlike most of the males in our extended family) you don't have to be full of rough and tumble and that writing poetry and songs and performing in public are perfectly valid activities. Adam works on the London Eye in between acting jobs. His wife Jenny is the head of front of house in a West End theatre and although most of Adams 'acting' jobs are in TV adverts and promotional material for companies, he still enjoys it immensely. Before he left he gave me a memory stick with his newly completed novel. He asked me if I would read it (the only person apart from his wife to do so… much to the chagrin of his Mum, my middle sister). I am looking forward to reading and offering him feedback, especially on the editing process. Like me he is working on his second novel and in return he gets a CD of my first novel to read. We ate lunch together and despite all the love and attention I received today my time with Adam was the highlight.8-)
I am now in bed and aching… I will be stiff and sore tomorrow no doubt (with Janet just the same bless her) while sitting in line for my Velcade… but it will be worth it, many times over.:-)
A beautiful, beautiful, love-filled day… perfect in every way.8-)
Dai.
[quote]I attend the Leicester Royal Infirmary for treatment,I was worried sick before my BMB. No cause for concern, they give you gas and air and the whole process is absolutely painless, why don't they do that at other hospitals![/quote]
Good question Tony… especially given the fear surrounding BMB's. I asked at Nottingham and I was told, by the Prof no less, that 'it wasn't the local policy'. I think that every consultant and registrar should have bi-annual BMB's as a reminder of what their patients have to go through because of their 'local policy'… I imagine that the 'policy' would soon change if they had to face one. 😀 😉 😎
Dai.
Hi Terry,
You say:
[quote]The first time around, 2011, my blood counts never got effected, well, only ever dropping slightly, which is the norm, but never nose diving like this time around, which I have to say, has really scared me, as I’ve never felt scared throughout this whole journey. I’ve just taken it as it comes, but have now realised, I know so very little about my disease, and all the different ways that it can hit you, not just physically, but mentally and emotionally.[/quote]
You also said:
[quote]Where is the pain?[/quote]
As far as I can see the first quote answers the second. Your disease is playing up making your blood figures go down… and that is leading to mental and emotional spikes. The evidence is there:
[quote]Okay, a visit to the GP I thought, as I clearly needed antibiotics. Rang the surgery, got to speak to the usual harsh gatekeeper, who only offered up the nurse practitioner, [b]and I felt too weak to argue with her,[/b] so I agreed to see her. 🙁
I really so knew what she would prescribe, the usual emoxiciling, (can’t spell it, and can’t be bother to google the correct spelling) my face dropped, as I knew from experience, that they would do nothing for me[b] I so wanted to ask her for something stronger, but just didn’t have the will or energy[/b].[/quote] 🙁
If you continue to allow the people who are supposed to be taking good care of you to get away with bland, second-class caring, then the cycle of poor attention and careless provision of treatment will no doubt continue to be the norm. At some time you are going to have to put your foot down and say 'enough is enough'… and tell them why it is so. You seem to have reached the stage where your expectations of care and treatment are very low and you are actively encouraging these expectations by your acceptance and silence. 🙁
You need to ask to speak to a lead nurse at the hospital and explain your concerns about the level of care you are receiving… from your GP's surgery and the hospital. Tell the LN about your inability to speak up and speak out… it is all part of your condition and is causing you great concern and mental and emotional pain at a time when you need to be strong. Don't be afraid to ask for help… asking is the first step and it is surprising how much people respond when asked. 😎 🙂
I am sure that the extra blood and possibly extra platelets (if necessary) will set you up for the Velcade (you speak of a 10 week timescale for 2 Cycles which sounds like a once weekly infusion plus the rest week x 2). Velcade is a powerful tool and its best results are normally achieved in the first few Cycles, so I am hopeful for you during your 'Plan B'. 😎
It's your life (literally) that we are talking about here Terry… so please don't accept a second-hand service while you are trying to plan your route ahead. 😛
'Where is the pain?'… in your head, through your emotions, at a time when you are vulnerable and in need of help. Ask, ask ask… and don't take no for an answer… you simply cannot afford it.:-|
Regards
Dai.
