Hi Andy,
It's a matter of slow, slow, drip, drip, slow for you at the moment but as folks have pointed out it's in the right direction. Your frustration levels must be extremely high but much better than the alternative.8-)
I am sure that Prof. Jackson will come up with something to get you onto the SCT programme but in the meantime enjoy your small jaunts and pub visits. I am sure you would have enjoyed my pub in Fishguard with its folk sessions, live music and award winning real ales… but alas I had to give it all up thanks to MM and now I can't even enjoy a few pints… perhaps a couple of halves but I don't bother… and neither do I miss it, which I wouldn't have thought possible.:-0
Whatever it takes brother… and it seems that patience and belief are the order of the day for the moment… and really, they are not big asks, as frustrated as you might be.;-)
Dai.
Hi Mari,
Post code lottery at work again? What heath board area are you in? But anger put aside for the moment I am glad that Stephen's got a date that you can work towards. A week on Sunday will soon roll along so don't leave the packing too late. Get your checklist drawn up this weekend and slowly put it together.
A quiet Sunday for the Mephalan and a full working week with steady staffing will be an advantage for what follows.
All the best, keep in touch and before you know it you will have him home.8-)
Dai.
Hi Vicki,
All the best with Coliin's harvest… I hope that his back aches profusely and that he delivers the little blighters in their millions.:-)
Dai.
My Dear Gill & Stephen,
May God bless you both with the strength to see this through to the end. Whether it is mobility or a little more time I hope that it is enough to say goodbyes and to let go with grace.
All us MM'ers know that our time is finite, that we will be claimed and moved on. Some, like Stephen, will just run out of options due to the aggression of MM, others, like Bridget, will succumb to infection due to a weak or non-existent immune system. I am just glad that Stephen is making his choices, while he can.
This may sound cruel Gill and it is not my aim but my main concern now is for you. It is you who will see things through to the end and you who will have to pick up the pieces afterwards. Stephen may decide to quietly slip away or he might rage and grab hold of every minute available to him… it sounds like he knows what he is doing, I believe I know what he wants… but it is you who has always written here… it is you who has become our friend, it is through you that we have felt every triumph and small disaster of Stephen's journey.
I wish you both all the strength and love enough that you may need at this time… and my small thoughts and gratitude for being my guiding lights from the start of my MM journey.
Dai.
Hi Sandra,
I had an extraction of one tooth before my SCT… my consultant did not want me going through the SCT with a dodgy tooth which was actively giving me trouble.:-P
I had the extraction done by a Doctor/Dentist at the Queen's Medical Centre, Nottingham under theatre conditions, with two nurses in attendance. It was the most painless, bloodless extraction I have ever had. I was kept lying down on a bed in a recovery room for two hours where X-rays were taken post-op and after a thorough but extremely gentle examination I was let home with a week's worth of anti-biotics.8-)
I know that most NHS and Private dentists don't want to know once you mention MM… so If you have to have a post-SCT extraction I am sure that the same or similar treatment will be extended to you. 🙂
Dai.
Hi Gill,
I had extensive RT when I was first diagnosed with 'secondary bone cancer, primary unknown'.
I had seven days @ 2 hours per session to destroy a tumour + 2 vertebrae that had crumbled onto my spine and were threatening my spinal cord. It left an area of skin that looked (and felt) as if it had burnt. I still have it today and that is the way it will no doubt stay. :-0
Battle scars I'm afraid. 😉
I hope the radiotherapy has an immediate effect on Stephen… alleviating the pain and giving him some control over his movements. My thought are with you every night.:-)
Dai.
I have watched, listened and sometimes felt your pain, concerns and confusions. There is no doubt that Slim and yourself have had a very rough journey up to Slim's SCT. But here is the conclusion of that journey and the outcome is worth its weight in gold. 😎
Well done! 😀
Enjoy. 🙂
Go out into the world with confidence and take as much joy as you can find… you both deserve it so much. 😎
Keep in touch now and again but don't be a nuisance. 😉
Much love.
Dai.
Min, Eva and Mavis,
Thank you for your messages of support.
I attended the DayCase Unit this am. for a 'clinical follow up'. They took my vital signs and bloods and then I was visited by the same Doctor who was with me throughout my two DayCase visits last week and my weekend sojourn on the ward. She has been a star… showing concern and a positive attitude in trying to get to the bottom of my illness… including the referral to the Gastro-Intesnial Clinic.:-D
My bloods are mixed… my platelets down from 140 to 68 – my neutros down from 2.5 to 1.6 but my HGB up from 8.1 to 8.8. Doctor Allison (first name, I don't recall her surname which is remiss of me) says that she is certain that my platelets and neutros will recover with rest… especially as I have my rest week from Revlimid coming up from Sunday. She has told me to rest, eat whatever I fancy, not to worry about healthy eating or calories, just what I want, when I fancy it, in small measures and plenty of fluids.8-)
It is good advice and I mean to take it and keep it. Getting from the car to the clinic and back was shattering… although in truth it was no more than sixty level yards from door to door. It took at least five minutes before I felt strong enough to fasten my seat belt but Nurse Janet, with the patience of a gaggle of saints, just waited until I was ready and drove me home carefully and with gentle conversation… where she put me straight to bed and here I am… comfortable, fed and watered and visited every half-hour to see if I want anything.:-)
All I want is her and proper rest and recovery… the past ten weeks have been awful and I hope that the current antibiotics do their job until the Gastro people can start work on fixing or erasing the problem.8-)
Dai.
Hi Theresa,
I agree with Andy, your post is very brave… I too like the idea that Peter can wander through your mind as he chooses… I certainly like the idea of visiting Janet in moments of need and the idea that I can have a choice in those moments is both comforting and inspiring.
I am sure that you will find the right balance between grief, mourning and comfortable communication… the latter of course will take some time to establish but I get the feeling that you will reach that level sooner rather than later.
My thoughts are with you… as they still lie with Min and Sarah, Tina and Roz and other carers who became friends and more throughout their journeys with their husbands. I hope you drop in now and again to let us know how you are… until that time comes when now and again becomes less frequent because your life moves on, filled with other journeys, other adventures and familiar blessings not associated with MM and all its miseries.
God bless:-)
Dai.
Hi Keith,
I know where you are at… I am just coming to the last week of Cycle 7 of Rev & Dex and I have had to contend with this series of gut infections which allow little to no quality of life… although the cause has nothing to do with Myeloma. I have been referred to the Gastro-Intestinal Clinic and I am hopeful that there is nothing too sinister going on and that they can fix the problem and allow me some sort of quality of life because I for one am thoroughly cheesed off with this 'existence'.
As for you Keith I think we both know where the problem lies… in the insuperable problems caused by your Dex dosage. Its your life… your decision… and if I was you I would be insisting that the Dexamethasone dose be lowered to 40mg once per week [b]as from now[/b].
Whatever they were trying to achieve with what I would call a massive overdose of Dex has either worked now or it is never going to work. I know they said for the first 3 or 4 cycles? But it has obviously had an adverse effect on both your body and your spirit… both just as valuable to you in your fight against MM.
I have been on Revlimid 2.5 and Dex 40mg once per week from the start and apart from the b****y gut infection everything else seems to be okay.
Its your choice… but rather than talking and thinking about stopping treatment to enjoy some quality of life surely it would be better to take control and ask for the treatment (or at least the Dex part of it) to be cut right back to the bone.
Its your life… take control of it and tell them what you want. There's nothing lost in trying.
Dai.
Hi Vicki & Colin,
GCSF time is with you I see… good luck and here's to a local ache or two. I was told to take paracetamol if the pain got too bad… but it was never more than a constant dull ache… with constant being the key word.:-)
Wishing you the very best of luck and a smooth journey up and into the SCT process.8-)
Regards 🙂
Dai.
Michele said:
[quote]My taste buds definitely changed too. I preferred savoury things and even gave away my Christmas tin of Quality Street because I went off chocolate!! [/quote]
:-0 :-0 :'-( :-0 :-0 Say it isn't so! Chocolate bars and inferior boxes perhaps… but Quality Street… for a sausage roll? How can this be?:-S
If I were you I'd be knocking on my consultant's door and getting a guarantee that this will never occur again.>:-)
Dai.
Hi Tina,
Not just CDT… I have often lost my appetite following treatments, infections and other causes. Myeloma doesn't cause appetite loss, that is firmly down to the side-effects of medicines… especially chemo.:-P
It does wear off and one morning you will wake up feeling hungry with your taste buds refreshed and ready for food. Six weeks does seem a long time but in the long term measures of treatment and recovery it is not that long really. You can request a session with a dietician who might be able to advise but generally I would say wait a while… I am sure things will right themselves soon.:-)
Dai.
Hi Gill & Stephen,
I truly hope that the medics do their utmost to alleviate Stephen's discomforts and pain and that the radiotherapy stops the current problems in their tracks. I realise how far Stephen has deteriorated in the past few months but I do hope they can bring some balance and control into his life.:-|
My thoughts are with you both, I do think of you often with regard and best wishes.:-)
Dai.
Thank you Mavis and you too Tom,:-)
I have decided to write to the ward manager of the ward. Usually I would put my experience down to weekend/bank holiday staffing and let it go but this is a purpose built ward for haematology with, I was assured, normal staffing… so I should expect better.:-(
I was admitted as a 'C-Diff' Isolation' patient with strict criteria to be followed. When we arrived we were told the room was not quite ready so we were shown into the day room to wait. It is a very nice room but small and narrow and there was a couple already in situ. I questioned whether we should share the room but the nurse said it would be okay because we were both waiting for rooms and it wouldn't take long. The male patient and his wife looked nervous and I tried to reassure them that my infection was only contagious from diarrhoea 'spores' and not from general contact such as breathing… they looked a little mollified but he was a lymphoma patient in for chemotherapy and his first ever stay in a hospital… I felt for them. After half an hour the nurse came for me and I was wheeled (wheelchair – I was to weak to walk) by Janet to the room and put into a chair. The bed was not made, all the bins were full and the floor had not been washed… it couldn't have been less ready… and this an isolation room. The intern came in and took my meds history which I filled in giving all strengths, times etc., of every medication and he was very pleased. Of course, as stated earlier he then made a dogs dinner of making up my meds sheet, missing three main meds and getting others wrong in terms of times and days.:-(
The nurse came in and made the bed after an hour's wait but at least I could get into bed. Janet left then because she had some shopping to do before going home. The cleaner arrived but he only wiped a few surfaces and washed the floor leaving the bins in the bathroom full to overflowing. They stayed that way until the morning.:-(
So with that and the meds fiasco I have decided to write and inform of my experience. There are procedures that should have been followed that were blatantly ignored and the bottom line is that it just wasn't good enough by far.:-0
Dai.
Hi Helen…
We will see on Thursday… I could have gone in on Tuesday or Wednesday but I chose recovery at home… where I am sure all bloods will pick up on their own.:-)
Dai.
