Sandie
I posted that 19 months ago and yes the second lump was mm. Stephen died. aged 57, on the 11th September 2012. He had mm for 4 years. He got very little remission. and 2 days after he was told he had 2 years left he got very ill and died within 4 weeks
Perhaps you don't read all the posts put on here
Gill
What a lovely post David Love from Gillxx
Dear Ann
Like you and Eddie Stephen and I were soul mates, best friends, joined at the hip as the kids used to say. Stephen had had to stop work quite a while before he died. He was a carpenter and builder but of course the mm took its toll and he could not do the physical work that it entailed. I retired a year early so I could stay at home with him. I got so used to him being around. We used to go out for lunch once a week and I used to go the hospital with him.
For a while he could walk a little way first on crutches and then a walking stick. Once he was using just the stick he could walk with one dogs, the quiet, steady one. I would take the lunatic monster. Then his mobility got worse and worse and he started to lose his sight
When Stephen first died I used to wake up and for a split second I would forget he had gone. It was like losing him over and over again. Unlike Min I have never dreamed of him I wish I could.
Do you have a local hospice near you? They often run a bereavement councelling service and ours holds a meeting every 3 or 4 weeks called Tea at 2 it is a place to meet others in the same boat as you and there you can talk and cry and laugh. I haven't been yet but I think I will give it a try.
Stephen has been dead 6 months now I still cry but not as much. I remember at one stage feeling so angry with him because he had gone and then feeling so guilty because, after all, it was not his choice.
I have started to make sure I have my own routine now and not the one that we shared. I have even got an application to join a sixties club. It is not just for single people but anyone over 60 They organise coach outings, theatre visits, sports, meals out lots and lots of different things that you can choose to do if you want. I find myself so isolated it would be good to meet other people.
At first I used to do my grocery shopping on line, but now I go myself. Sometimes the person on the checkout is the only person I have spoken to for days.
I still find myself looking at the sitting room door when I sit down in the evening expecting him to walk in. Although I do it less often now.
I still have to empty out his wardrobe. I am not sure if it is my laziness or fear. I did ask somebody to throw away a particular pair of shoes. He rarely wore them preferring trainers but we referred to them as his dog chosen shoes.
We bought our Westies from different breeders nearly 2 years apart and both times he wore these leather loafers. We didn't choose either of the dogs. On both occasions one of the litter dashed over to Stephen and started licking his shoe. They were both bitches, which is what we wanted and they chose us. Lazy beast,Stephen, used to leave them under a small table in our bedroom and I could not bare to see them.
I suppose, for me, that terrible raw pain you feel at first has passed a little. I miss him so much. Just posting this has me crying again so I must go and blow my nose and get on with feeding the dogs and me.
Do post when you can you know that you will always get support on here
Love from Gill xxx
D ear Sue
I am sorry for my late message but I don't often come on here. I am glad that Michael's funeral went well. I found it quite difficult after Stephen's funeral once it had all settled down I think the reality hit me. Nearly 6 months later I still miss him like crazy but I suppose I have settled into my own routine.
I have decided to go to France probably in June. I have a very close friend that will come with me. It will only be for 2 weeks as she cannot take more than that off work.
I am finding it very difficult looking at bookings etc. Stephen and I were there last April and the thought that he will never come with me again is breaking my heart.
I do hope that you feel better in the weeks and months to come. I promised Stephen that I would not just stay at home and become a recluse so I am looking at a couple of evening classes and when I feel a bit stronger will volunteer to help in the shop, book collecting etc in our local hospice.
Do get in touch from time to time. You know that everybody on here will offer you as much support as they can.
Much love Gill x
Dear Grayham
This is not a club that anybody wants to join but if you have mm it is the best place in the world to get support and friendship.
The treatment for mm and the drugs that are coming on line are getting better and better and I cannot wait to see mm getting kicked into touch once and for all. Too late for my husband who died aged 57 after 4 years of having mm but in time for others.
I hope your treatment goes really well. Keep in touch with all the lovely people on this site they will help you through your journey and cheer the roof off when you come out the other side. xxx
A huge Welcome Home from me Gill x
Hi Sue I am so pleased that you are both getting some help at last your Mac nurse sounds wonderful.
It is good that you may be able to take a break from work. With Michaels DLA allowance and you not working for a while it may give you a chance to see if you could manage on semi retirement money and Michael's benefits.
I retired at 59 instead of 60 when Stephen became worse I lost out a little financialy but I understand that may not be an option for you.
Is Michael awake more now and able to chat now his pain is under control?
Do visit the hospice. I know that people die there (my darling Stephen did) but they don't just cater for the absolute end. Respite, advice, lots of different therapies. I expected it to be a place of gloom. Far from it. Bright and airy with a feeling of hope. They cater for patients and family members alike.
If you don't feel like posting we all understand but please remember that you and Michael are in all of our thoughts
Much love from Gill xx
Has anybody heard from Sue? I have been thinking of her and wondered how Michael is Gill xx
Hi Heather
One more tip take a pad and pen when you visit the consultant. Even with 2 of you listening carfully it is easy to not remember it all
Godd Luck Gill
I suffered from cramp when I started on beta blockers . My cardiologist recommended I take Co Enzyme Q10 200mg at night
When Stephen started getting cramp because of his mm we checked with his oncologist and Stephen was told it was OK to use them.
They are a natural food supplement not a drug and take a couple of days to kick in. Min recommended the Healthspan site as they are quite reasonable for supplements http://www.healthspan.co.uk. They certainly helped Stephen and I still use them. Once they kick in beware of becoming complacent. They may take a couple of days to work but forget them for a day or so and you are soon hopping around the bedroom in the middle of the night yelling in pain and wondering if your calf muscle will ever stop trying to move round to your shin bone!
Gill xxx
PS Nettie is right bed socks help too
PPS to David this has come up before and I posted about Co Enzyme before but I think it was on the old site
Dear Sue
Has anybody suggested that Michael go in to your local hospice for some respite care? It can be a chance for you to re-charge your batteries and catch up with some much needed sleep, knowing that Michael is being looked after 24/7.
Our local hospice was marvelous. They had Stephen's pain under control straight away and they are very aware of how important that it is for the patient and their loved ones to be able to be with each other and communicate. They had Stephen's medication so spot on that he was able to stay awake concious and talking to me, but in no pain, right up to the end.
For some time Stephen thought he would want to be at home at the end. He changed his mind after a while realising that, for him, it would be not be the best way He thought that his pain may not be dealt with straight away, his dogs would have to be sent away to a dog minder, mind you in the hospice it was nothing to see a dog visiting . All visitors are welcome (Oh boy was that man a softie for his dogs. Loved them a great deal more than me:-) ) Our house is not big but on 2 levels. Where does the hospital bed go? no chance of putting in a hoist so that the bed can be made more comfy. The list can go on but it is a very personal choice that only the people involved can make.
For me the fact that Stephen was in St. Christopher's Hospice was a comfort, knowing that he was getting the best possible care. Some people are in there for weeks. Some go in and out. Stephen died very quickly (it even shocked his medical team. Right up until 4 weeks before he died they were sure he had 2 remaining years)
I have waffled again (as usual ) but the bottom line is I am thinking about you both and hoping that you and Michael get what is best for you.
Much love from Gill xxxx
Shanks fer dat. I followed all instructions please wake me when overhang? hang something? recedes into just a thumping head and an unquenchable thirst. Oh thats better more cuervo to quench my thirst xxxxxxxxxxx
PS I think the quote is "Here's Looking at You Kid" Come on film buffs Casablanca?????? Gill xxx
My house is at 36 Bridge Road BR5 2BH Telephone 01689 821467 Any body is welcome unless they have evil ideas In which case my Guard Dogs will see you off 2 soppy little Westies (but don't tell anyone. Let's pretend they are killer huge dogs rather than both under 12 inches high and want you to love them to death
Stephen MADE me promise to go back to evening classes. to improve my french. change my stick men into real people. He was quite a good artist (probably comes from a building/archetectbackground
I would never break a promise
As horrid as it is I think you should DEMAND that Margaret gets on with whatever just might interest her
Ir is very hard to deny somebody that you adore but has a very short life span what they want Believe me
Love from Gill
—–Original Message
Dear Helen
Don't ever feel "mean" posting good news. My Darling Stephen died in September. He was one of the unlucky ones.
It is great to hear of people doing well, and makes the possibility of seeing this horrid illness kicked into touch for everybody seem a little closer.
Good luck and good health Love from Gill xx
