Hi Jackie,
There are quite a few people who still visit this board regularly who I am sure will be able to offer advice based on their experience of grief and loss… but it is the weekend and they may not be around for a day or two.
In the meantime all I can offer is sympathy (rather than the empathy that you need).
I can understand your daughter's dilemma… believing that they are not important, or not important enough, to you for you to help them with their grieving. They are wrong of course but that doesn't make it any easier for you or them. Perhaps you should sit down with them and explain that you understand how bad they must feel but that you are just the same and your grief and your loss, of your husband and your best friend, has left you temporarily numbed and unable to respond to anything or anyone… that you know that this feeling will pass in time but in the meantime you will all have to help each other, by being there, willing to talk, willing to share. From what I gather from our widowed friends one of the most important things is to talk about their loved ones, about their personalities, vagaries, good and bad and to keep their memory fresh and alive in a positive, healthy way.
You are bound to get days like these… perhaps especially at weekends when you would be together and going out and about or just chilling after a week at work. Why not ask your daughters to share a video and a bottle or two of wine (dependent on their age of course – substitute wine for chocolate, lots of it)… it may seem a forced activity at first but I am sure that it will bring you all together, whatever emotions it releases.
I am sorry that I cannot be more helpful at this time but grief and loss are not mine yet… I will be the one to go and Janet will be left to pick up the pieces of her life… but we do talk about it often, especially now as I reach the end of treatment options.
I wish you all the best and I hope someone comes along soon to give you more relevant advice.:-)
Dai.
Thanks to all for reading and commenting… your comments are much appreciated. Looking back I can see that I did indeed have a rough ride during that first year but while the lack of treatment and care was terrible it was the amount of bone damage that occurred during the last 6 months of that period that has caused so many problems for future treatments.
I wrote full reports and sent them to the authorities who directed me to the agencies who could take up my case. The English agency snapped it up and started following it through but then found out that they could not take it any further because the case occurred in Wales and was outside their jurisdiction. They gave me a report to send to the right agency in Wales… who snapped it up and went to work… yep, they then got in touch with me to say that although the case occurred in Wales I now lived in England which put me outside of their jurisdiction.
I have half-heartedly tried to follow it up but my heart has not been in it while treatment, infections and general malaise have taken over. I have been told to try these 'no fee' solicitors that advertise on TV etc., but to date I have not contacted them. Although compensation would be very gratefully received it was never my intention… I wanted the proper authorities to act on my behalf to make sure that the consultant could not/would not behave to others like he did with me… but I would have to do it all myself – something that I am more than capable of doing but lack the energy and strength to proceed. Perhaps I will give it another go… but it is getting very late in the day for me now and other priorities have taken over.
Pete, you are right about having to move house… as a matter of fact I had to move countries, although to be fair, the first time I wrote about this a few years ago there were a couple of people who said that Cardiff was excellent… but I would still have had to move because Cardiff would have meant a 250+ round journey for every hospital visit – from Nottingham I could reach almost every hospital in England with that distance to cover.
I cannot fault my care in Nottingham but I miss Fishguard and my friends terribly and I know that the lack of care in that first year has cost me dearly in terms of life expectancy… but that's my lot and I have tried to be as positive as possible since diagnosis… and this site has been a godsend in that respect.
Much love to all.:-)
Dai.
Forgive me Peter, I am not trying to be glib or make light of your points which I fully take on board but if I have to take paracetamol for ten years I will be the happiest man alive. 😎
As a matter of fact, right now, I'd settle for 2 years.;-)
Dai.
Hi Jacquie,
That's dates and a plan… and a comprehensive plan at that. 😀
I can only wish Geoff the best of good fortune at every stage of the plan and hope that your nerves hold out, especially as the SCT grows nearer.:-/ 😀
Remember that we are here to help explain and share experiences of each of the processes and procedures… some years old and some days fresh… you will be glad you asked and soon you will be explaining and sharing yourselves.8-)
That's the way it goes. 🙂
Regards and best wishes
Dai.
Hi Peter,
Thanks for that, I would have found it interesting as an article anyway but more so now that I started on Zometa last month after four years of Bonefos (apparently I slipped through the net). I will have my Zometa with my 2nd infusion of Bendamustine for as long as the treatment lasts and then as a stand alone after that.
Regarding your teething problems, I had to have an extraction before my SCT and my consultant referred me to the Doctor/Dentist at Queens. It was the best treatment I ever encountered. X-Ray, pre-op with 2 clinical nurses, the extraction in theatre-like surroundings and then 1 hour recovery in a restful side room before being examined by the Doctor before being let go.
I was told then that any further treatment would be carried out at Queens. Queens is local to you (more local than me… 20 miles the other way towards Grantham). In truth I could do with an examination and a scrape and clean but that is small potatoes for a busy hospital and local dentists won't touch Myeloma patients with a barge pole. Still, I have not had any problems since (I can't believe that I just stopped to touch wood) so I will trust in Zometa and hope that I don't have any dental problems between now and the cows coming home.
Regards
Dai.
Hi Ali,
I agree with Eve, ring MUK and speak to Ellen or one of her colleagues regarding the complete rundown of the test. I have done about 10 of these tests, including one early on where, like you, I flooded my body with liquids and filled the bottle before midnight… actually it was before 7:30pm (I was listening to 'The Archers' 7pm to 7:13pm at the time the bottle was filled 😛 ). I told the nurse at the counter the following morning and she ditched the test and gave me 2 more bottles and I started again the following day. I felt embarrassed but she said it happens regularly with new patients (although they don't tell you that when they dish out the bottles). :-/
As I understand it the test requires you to go to the toilet as normal for the first pass of the day and finish with the first pass of the next morning… it is essential that you complete the 24 hours (or as near as). It says on the bottle not to go above the marked line but as often as not I go over rather than start a new bottle but I know it is difficult to gauge. 🙂
All the best and regards 🙂
Dai.
Hi Tanya,
I appreciate your stand in not taking your children to see your Dad… and I also feel sorry for Ron for having to deal with the demons brought on by alcohol on top of the problems presented by MM. But I am also quite sure that he knows what effect his behaviour has towards those that are only looking to help him. It becomes a vicious circle that only he and he alone can break.
It is hard enough dealing with MM with the back-up and support of a partner and family, never mind on your own with some serious problems in tow… the skeletal/bone problems and the personal problems. If he has started missing appointments etc., then he is soon going to find dealing with the minutiae of everyday life very difficult indeed because the carers won't put up with the threat of violent behaviour for very long. As Vicki pointed out, it seems that he could do with a stay in hospital to get him back in balance before they can sort out treatment and care plans.
I'm afraid that I have very little sympathy for those that take it out on those closest to them… whether they be family or paid care-workers… any way you look at it it is not acceptable and someone (his GP for instance) should lay down the law and make it quite clear what is and what is not acceptable when all everyone is trying to do is to help him.
My sympathy lies with you and with your family and I hope that your Dad's Light Chains start improving and give him some hope and momentum towards facing up to MM and accepting the help offered with good grace and a determination to get a grip on his drinking. It won't be easy, hence the need for his consultant to work with social services and his GP in formulating a care plan that works for everyone involved.
Wishing you all the very best.
Dai.
Hi Sandie,
I have followed your thread throughout but these good people seem to have everything well covered… excepting one thing which I think has slipped through the net (forgive me if it has not and I am repeating advice already given). :-/
Liquids intake – 3 litres a day minimum… your Mum definitely needs this. MM sufferers are prone to kidney problems and the 3 litres a day keep the body both hydrated and washed through. It doesn't have to be just water… tea, coffee, squash and soft drinks, fruit juices and mineral waters, still or fizzy all count… but she needs to spread the amount throughout the day. It is also good for washing away the debris that can lead to stomach upsets and 'sicky' feelings. 😀
Talking of which,,, I took Bonefos 800mg twice a day for nearly four years until last month when they started me on Zometa (I had slipped through the net apparently and should have been on Zometa for the past 18 months – but hey ho!). I have never heard of anyone being sick from Clodronates in the 3.5 years on this board (perhaps they have but not reported here)… which leads me to suspecting the Chemo tablets which often kick in a few days after taking them as they get to work around the body. Sickness tablets such as Domperidone are meant to be taken as a preventative, so it might be a good idea for your Mum to start taking them a day before her Cyclophoshamide is due and then for three days after then a short rest before repeating the process… I am pretty sure that that will be helpful. Also, peppermint tea and high level peppermint sweets to suck as and when she feels like it – both of which I found helpful. I take a small flask of peppermint tea to bed with me most nights. 😎
If your consultant is thinking of steroids i.e. Dexamethsone (hereby for ever to be known as Dex) then tell your Mum to grab hold and be grateful for them… they are one of the most commented on medication… running about 95% negative (side-effects, me included, especially when I get little to no sleep the following night but the truths that Dex is a wonder drug and despite our moans and groans it is an extremely helpful aid and back up to the chemo… which is why it accompanies [b]'all'[/b] the available treatments following the SCT, or straight on to them if a SCT is not offered (your Mum will not be offered a SCT as the normal cutoff is 70 years of age with a few exceptions for people who are extremely fit for their age (we have at least 2 on here who sneaked a SCT for being 'Supermen', they know who they are.;-)
And lastly I think your Mum is wonderful for putting up with MM at her age… not because it is a terminal illness (she could last 5 years or more with carefully selected treatments) but because it is a traumatic disease to be associated with, especially the side-effects, most of which can be lessened by following the medication advice and the experience of people ahead of her on here. Tell your Mum she is my new hero(ine).8-)
Regards and best wishes for the treatment plans for the both of you.:-)
Dai.
PS. This site and phone calls to the resident nurses at MUK are all you will ever need for coping with MM – trawling the net will bring confusion and fear in equal measures – don't do it!
Hi David,
The radiotherapy in 18 months or so is not such a long shot as it first seems.
Say you get 12 to 18 months from the Velcade (it's usually a pre-cursor to a 2nd SCT but gives you a fair remission on its own merits) by that time, as you get ready for the next step to Revlimid (and Dex of course) the newly licensed drug therapies from the US of A – Kyprolis (Carfilzomib) and Pomalyst (Pomalidomide) should both be up and running as available treatments, both running with Revlimid and Dex. Early indications look really good and 18 to 24 months look like being the median.:-)
So there could be 3 years on offer (perhaps more as further results come in from trials and early treatments – I wouldn't be surprised at 36 months from the combinations) which I think would put MM as the safer bet to run with as the main treatment, with the radiotherapy to keep the prostrate at bay. Who knows what else might be being prepared or even licensed in those 3 years? 😀
I'm still hoping to get a shot at Kyprolis (I missed the trial by 7 days:-P)… it was licensed last June so it can't be far off being licensed in Europe and the UK… I hope!
Regards and best wishes for whatever course you choose.8-)
Dai.
Hi Maureen,
The trouble is I have no idea when my neutropenia has lifted. I finished my 2nd infusion of Bendamustine a week last Tuesday and then I was sent home for the best part of 3 weeks to allow the chemo to do its job and then for my bloods to recover. 😎
So Janet will have the Grandchildren at their home tomorrow which we know will upset them because they like coming to our house and I know that they enjoy spending time with me… ditto with knobs on but I dare not risk it at the moment. 🙁
I will have to take advice from my consultant. 😐
Dai.
Take it was… but take it all the same, at a much reduced rate and avoiding all but the closest of family for the first 6 to 8 weeks or so until your bloods get to normal or better.:-)
Take this time just to look at each other, chill out and get addicted to daytime TV… so when fitness allows you can rummage around the car-boot sales as budding antiques experts while valuating the houses in the countryside on your journeys to and fro. 😀
Enjoy every minute of your time together. 😎
Dai.
Agreeing to undertake a Stem Cell Transplant is a one-way ticket to the future. After the Melphan and the return of the Stem Cells you really have entered a nonnegotiable contract with your body. With any other course of treatment you can say 'Enough, I want out of this'… but with a transplant you have no other option but to see it through to the other side, regardless of of the smoothness or the roughness of the ride. :-/
I can remember vividly looking at a reflection of myself in the bathroom mirror of my en-suite apartment in the hospital. I had been in the apartment for 11 days (officially Day 9) seeing no-one but the medics, cleaners and catering staff and I wondered what I looked like to them. I examined the face that stared back at me and I really did struggle to recognise any semblance of 'me'. My face was drawn, gaunt, grey and almost skull-like… I looked as if someone had syphoned off all the goodness and vitality from my flesh, leaving an empty, dehydrated carcass. I was fascinated rather than horrified but it was the point where I said to myself 'It's time to turn the corner',,, I couldn't imagine looking any less than myself than at that moment. Two days later I got my 0.1 Neuts and within three days of the magic number I looked almost normal… 'Looked' being the operative word… I felt like a new born babe. I had to wait one more day for my platelets to catch up and then I was allowed home… on the very day that they cleared Janet as fit to visit. 🙂 😉
My mantra was and still is, 'Whatever It Takes'… choose your route, get on board (mentally and physically) and see the journey through to the end. The SCT has been the only time that I had no option, no choice in the matter once I had started that particular journey. For all the inconveniences, physical anomalies and mental stresses it was not as bad as I had built myself up to expect and it was over much quicker than I thought it would be as well. 😎
So chins up, embrace each day and countdown the ticks on the calendar… and before you know it you will be on the way home… as you… leaving the ghostly ghoul of the SCT behind you in your room. :-S
All the very best to all who have chosen the SCT route… it will be worth it. 😀 😎 🙂
Dai.
Like Helen I did not want to see anyone (except Janet) during my SCT enforced stay… well I got my wish and it included Janet, who was there for the SC return (all 14 bags) but then came down with a nasty cold and recovered just in time to take me home. I was alone but not lonely as I invented my SCT Olympic games and kept in touch with all my friends on here (not too many left now). The Olympic games were of an individual nature but one or two contemporaries tried some of the events for fun. 😎
I watched a lot of TV (well, I had it on for company) I trawled through YouTube but mostly I dozed, My SCT Olympic events were mainly based around toilet visits and other bathroom events but they certainly helped pass the time and by the end I had increased times phenomenally and became very efficient (with good need during the 'runs' stage.;-)
I know it took a lot of work and encouragement to get Frank tothis stage and there is no backing out now… so I wish you both well for a relatively smooth journey and wishing you all the best for a short stay and then home for a leisurely recovery.:-)
Dai.
Scarborough is a beautiful sea-side town and because it meant something to your whole family I am sure that the weekend will be a bitter-sweet affair. Make sure all of you do get your pampering, preferably after your scattering of Michael's ashes. I have only ever visited Scarborough, never stayed but I have enjoyed several weeks at Whitby Folk Festival and enjoyed every one of them thoroughly, attending concerts, playing at the open mics and just standing and watching the various street events… a great venue and a wonderful town.
I'm glad that you have the support of Min, Gill, tina et al… none finer and of course they have all been there before you… but still it is your journey and I am so very glad you have your daughters with you for mutual support.
Best wishes
Dai.
Thanks Tom… and you stay fit and relatively healthy for a long, long time to come my friend… believe me it does us good to know that at least one of the old guard is beating this bloody disease back down the field.
You and Elaine have both taken a battering these last few years and you deserve every good thing and every bit of luck that comes your way.
'Onwards and Upwards', 'Whatever It Takes' and 'Vasbyte' 😎
Dai.
