Hi Sarah
I don’t post very often but still have a look now and again to see how people are getting on.
It is a very hard decision you are faced with especially as you have years of work ahead of you. My husband was diagnosed in 2008 just after his 53rd birthday I was 5 years older (I always said he was my toy boy but my daughter told me he wasn’t young enough apparently a toy boy has to be half your age!)
His first SCT lasted for 16 months and the second one did not take. I had been with the same company for 17 years. My attendance record was very good but when Stephen started getting worse I got a certificate from my doctor and because my “sick package” was generous I took it!! 3 months full pay 3 months half pay. I was due to retire at 60 but took early retirement at 59. My manager was fuming, but I didn’t care a jot. Stephen was gravely ill and not much else was important. I wanted to spend whatever time he had left being with him. My manager told me that I was leaving her and my colleagues in the lurch and she would have to get agency staff which would reflect on her budget for the year.
My manager’s manager allowed me to only work 2 weeks notice (it should have been 2 months) and my colleagues did not feel they were left in the lurch. They felt nothing but empathy for me and were great.
Yes we were short of money. Stephen couldn’t work by this time and as he was self employed nobody was going to give him sick pay. He did receive DLA and ESA. I had a small private pension (we are talking in the region of £58 per week and on top of that I received a reduced State Pension as I hadn’t worked until 60 All of that does not add up to much when you still have a mortgage.
We still used to go out either walking with his beloved Westies. Him on crutches and me trying to stop the monsters pulling (they may only be 12 inches high but they are unbelievably strong when they decide to pull) We used to go out for lunch once a week. Nothing posh. The Chinese eat what you like for £6.00 (We never ate a huge amount but some of the diners were unbelievably greedy) or the local Carvery £6.99 for 2 courses.
You said that your husband is at an early stage of his mm but maybe you are thinking about the future and I hope it goes really well for you both.
Stephen died on the 11th of September 2012 aged 57. Even after 16 months without him I still cry most days (and curse him for leaving me. Hey I know he didn’t want to go but grief has a funny effect)
As usual I have waffled on until the early hours of the morning, and I cannot really be of any help to you. Your boss sounds great and patient Look very carefully at all your options. I do know that I am grateful to have spent so much time with Stephen towards the end, but it is different for you. Different stage of mm, different age, different circumstances, different people.
I hope your husband does manage to become more mobile and that he goes into remission.
Do let us know what you decide to do, but whatever you decide I wish you both the very best
Gill xx
I don’t come on here very often now but I know that Corsodyl toothpaste and mouthwash really helped Stephen
Hi Tom so sorry to hear your news but there seems to be a great many new drugs coming on the scene to keep mm in control.
I know that everybody on here has their fingers crossed that your medics find the right one for you to kick the blasted disease into touch for a long time.
Much Love Gill xxx
I was so sad to hear of Dai's death. I live just outside London so could not attend but I will be very much thinking of him and his family on the 9th.
I hope that the service will be a celebration of his life.
Goodbye friend Love from Gill xx
You shouldn't encourage me by saying that my post made you laugh. I take it as a compliment and write another waffle. I have no problem at all with your laughter and chuckles. I have laughed myself (but only when I got back home)
Eve you are absolutely right regarding the worming jabs but I am programmed like a rat. Stephen and I always left vaccination until the morning we were due to leave and then packed and left. I don't remember why we did it this way but that was what I did on this trip.
I had found when ready to leave from my half way stop at Chartres that I had lost my credit card wallet. I tipped out my overnight bag,wash bag dog's bag. Everything. I had a debit card in my purse, and I went down to reception to pay on that and asked if anyone had handed in my wallet but nobody had. I explained that I had to phone and make sure that I cancelled my cards and hoped I would be out by the noon booking out time.
Reception kindly said that the room was not booked out for another couple of days so I could take as much time as I needed. Before I phoned the card people to cancel, I got my main luggage from the car (2 very large holders, my things would go into one but it becomes too heavy for me so I split it)I tipped both bags out and went through everything. No wallet.
By the time I had done gone through all my luggage and cancelled my cards I realised that there was no way I was going to reach Eurotunnel in time for my crossing so I phoned and changed my crossing to early evening.
Panic over, off we went. The dogs are always brilliant travelling. They fidget for about 15 minutes and then settle down to sleep. I stop about every 2 hours to give them a drink and take them for a pee Then they get back in the car, fidget for a while and then go back to sleep.
I got to the tunnel in plenty of time and drove straight into Pet Control.
They used to come round the counter and scan the dogs but now they hand you the scanner and you do it yourself. I scanned Echo, fine, scanned Anya no go. She has 2 chips as the first put in was faulty. The second is much lower than Echo's and almost seems to be in between her shoulders.
One of the Pet Control Officers came round and tried. No reading. Then she tried it on Echo. No reading. The thing had packed up. After getting another scanner both dogs were cleared. PHEW!
They checked the chip numbers against the passports and then looked at the vaccination entries. Problem. Their passports were stamped and signed at 9.30am and it was now gone 6pm. My 24 hour window had past. Entry denied!!!
I burst into tears but immediately realised that I would have to deal with this and pulled myself together. They gave me a list of vets in Calais town and said that the first on the list was nearest. They telephoned her to make sure she was open and she said she closed at 7pm. Fine I set Tom Tom and off we went. I got to the street in plenty of time and parked. The street was deserted. No shops open and no vet's. A man passed by and I asked him if I had the correct street. I showed him the pamphlet I had been given and he explained that I was in [b]la Rue[/b] de Curie and should be in [b]le Boulevard [/b]de Curie.
He gave me instructions and said that it was a busy road and I may not get parked. So off I went on foot. It was getting later and later and I was running out of time to catch the vet. I started trotting and first of all both dogs thought it great fun. Then they got fed up and wanted to stop and sniff everything. I carried on trotting, dragging them in my wake.
By the time I got to the right place it was well past 7.00 and the vet was on the pavement locking up. I was so breathless I could not speak. I just pointed to the dogs. She unlocked the door, turned the lights on and sat me on a chair just inside the entrance. She went and got me a glass of water and waited until I got my breath back and could speak.
We then went into her consulting room and she examined both dogs, gave them their jab and signed and stamped their passports. They could travel at 5.00pm the following day. I asked if there were any hotels in the area that would take dogs and she told me Cité Europe was a 5 minute drive away.
Well! It would have been if I could have found my car. I tried to remember the instructions that the passer by had given me on the way and reverse them. It would be fair to say that my sense of direction is not good. In fact, to be truthful it is b***dy useless. I spent 2 hours wandering round the deserted, dark, back streets of Calais, by which time the dogs were quite distressed and I was so dry that if I had found a puddle I would have drunk from it.
Definitely time to admit defeat and shout for help. I phoned 112 (the international help line for emergencies) and asked for the police.
I was put through to the nearest police station and explained what had happened. At the end of my explanation I was told OK I understand, goodbye. Before he had a chance to put the phone down I screamed allez Vous??" you come?. "oui". I had explained which road I was in and told them which shop I was outside. (it is a very long road) About 20ft from where I was standing was a bus stop. It was not a shelter but it was lit up and had a bench to sit on, so I went there. The dogs laid down under the bench and I sat there shivering and shaking. The few passers by that walked past looked at me strangely and I am sure they thought I didn't know the service had stopped.
After an hour the police turned up. The dogs had become a bit distressed by then which is so not like them. 3 officers got out of the biggest Land Rover type vehicle I have ever seen. Stephen had Land Rovers years ago but not that big!
I know that policemen have got younger and taller as I have got older but there couldn't have been one of these men that was under 7ft. I had found a scrap of paper in my bag and, thinking they would take the details, drive around and then come back and tell me where to go I had written down the details of my car.
I showed them the scrap of paper and they said OK but motioned me to get in the giant car. "les chien?" I said and they picked up the dogs and put them in the back of the car. My turn now! Well. One of them got into the back the opposite side to me and took my hands. Another Half lifted me from behind. A push and a pull and in I went. Embarrassing? What came next was probably worse.
Within 2/3 minutes there was my car. I had turned out of the vets the wrong way, and got hopelessly lost. Not even knowing how to retrace my steps.
I apologised and thanked them over and over again. I shook their hands and told them they were wonderful and I loved them (you can get away with declarations of love when you are a pensioner).
I got into the car and started it up. I knew the dogs needed a drink, as did I and I would have to re-set Tom Tom and I thought once I was in my car they would drive off. No way. I moved off and they followed me until I was out of town. I expect they wanted me out of their jurisdiction. Once they had gone I gave the dogs a drink. Poor things I had to fill the bowl up twice, I had a drink of water myself and re-set tom tom.
Within a few minutes I was in a 24/7 Ibis and standing under a hot shower. Bliss!
I set off the following morning, got to the station far too early so I grabbed a coffee and took the dogs for a long walk.
At my designated time I went to Pet Control and went through the rigmarole all over again. I was so scared that the dogs would be refused entry for a second time. No problem and off we set.
I cannot remember much about the drive from Folkston, except worrying if my bad luck would continue and something had gone wrong at home.
All was OK the house was very cold after being empty for so long but soon warmed up. The dogs, as good as they always are wherever I take them, were excited to be back, check out the garden and sniff round every room. I went to bed thinking "Never Again"
Who was I kidding? The following morning I could almost hear Stephen whispering in my ear. "What does it matter they can't take your breath away, and life's too short to worry". He often said that. I worry over everything and he was always unbelievably laid back.
I have changed a bit since then. Even though the journey was a nightmare nobody took my breath away, and Stephen's life was definitely too short.
I won't go back to France until après hiver (after winter) as it gets so cold there but, come the spring I will be there.
Love from Gill xx
PS since coming home I have had a phone call saying my wallet had been found, handed in and looked as though everything was there. I had left it in the village supermarket on the day I came home, after all one has to buy a couple of bottles of wine, smelly cheeses and some very sickly French nut nougat
P S to Richard I don't think it was so much "I came, I saw and I conquered" as "I came, I saw, and fell flat on my face. But picked myself up";-)
Stephen's chemo nurse told him to apply. She said as soon as you put down, your condition and what treatment you are receiving (especially chemotherapy) they automatically issue a blue badge.
We had never even thought about it and the nurse with her was amazed. Karen said she told all her patients to apply. The form went to her and she ticks the boxes truthfully, whether it is chemo or radiotherapy. She said it is the treatment you are receiving not the illness.
She went on to say that mm is a shitty condition. You don't get much so get what you can. Tut Tut a nurse using bad words:-)
Stephen refused to use his badge on a "good" day. He was more than grateful that his mobility was OK and said that somebody who needed it should have the space. My daughter was still in England at the time (she has since moved to America). One day while parking at the supermarket, she saw a woman park right next to the entrance in the first disabled space. The woman got out, locked her car and started to move off to the shop.
Donna said to her "excuse me you've forgotten to display your Blue Badge". This middle aged woman got all girly giggly and said "I haven't got one" Donna is educated and polite, but she was fuming. She said to the woman "My Dad has a Blue Badge He would give it to you if you would swap it for his terminal cancer"
The reply? "Oh don't be so stupid I am not going to be long" Donna told me that if she'd had a different personality She would have let all this woman's tyres down. As it was she never quite forgave herself for not deflating the tyres.Stephen died last September. His Blue Badge is still in the kitchen drawer and does not run out until February 2015. Would I ever use it? NO NO NO.
Do re-apply, get your medical team to endorse your application As Karen said you don't get much.
PS obviously the rules may have changed but definitely ask Steve's medical team. xx
love from Gill xx
Hi Steph
So sorry you have joined us but it is a great place for support and help.
My husband was diagnosed with mm when he was 53 One of the worst side of effects of the treatment (for him) was the dexamethasone. Stephen was always so laid back and calm. He was always an absolute teddy bear, but became a grizzly bear on Dex. (I coined the phrase "dexatude")
When I asked his team about it they told me that they didn't warn people because not everybody suffers these effects. It is the only time I got angry with his team of doctors. I would have appreciated being warned.
Good luck to your Dad (and you) Being on a trial means he will be monitored extremely carefully which can only be a good thing. Keep in touch with everybody here
Gillxxx
Hi Eve,
La Maison du Puits is in the middle of La Creuse, in the region of Limousin. Very, very rural. No Cheddar:-(
About 4k away there is a smallish Carrefour, a pharmacy and a very expensive and classy Brico shop. Anything else (including Leclerc) is about half a day's drive.
When we first decided to buy in France we looked at all the places that were popular. The Dordogne, Provence etc. HOW MUCH? We just kept moving on until we found somewhere vaguely affordable.
It may sound like sour grapes but we were both so pleased that we were not in the "popular places". It turned out we were the only English, and not in some sort of enclave. We made a point of inviting all neighbours in to have a look at the building/updating work that Stephen was doing. They are all soo nosy. They even slow down in the summer when we have our door open just to stare at us eating our lunch sitting at our large old scrubbed, pine table. We went to every fete and fair in the village (3 stalls and a little children's ride 🙂
We started to get invited to pre lunch "aperos" and invited them back. One elderly neighbour now moved to Paris to be looked after by her son and Daughter in Law (she is over 100) would sample our "nibbles" and say (in French) this is English???? (strong cheddar our local butcher's sausages cut into bite size pieces, tiny slices of home made quiche) "but it is delicious!!!!! I baked her a cake and a savoury tart that always goes down well in my family and again she was amazed that an English woman could cook:-)
Mind you years ago Paulette baked. In the summer everybody's doors were left open. If we were upstairs we often came down to find a very yummy cake on the kitchen table.
When Stephen first got mm he wanted nobody to know he was ill. The one exception was our village, la Celle sous Gouzon. We could not travel while he was receiving treatment, but he hated the idea that they may believe we just got tired of it and could not be bothered any more, so I contacted a neighbour's son who lives in Paris and has quite good English and explained.
He conveyed to me all the messages from the village. It was all hope and prayers.
When Stephen died I emailed Bernard and he let everybody know. 9 months after Stephen died I went back with a friend and the dogs. I have lost count of the people that turned up on the doorstep to hug me, kiss me and cry. Of course them crying set me off, but I so appreciated their sympathy.
Anyway this waffle has gone right off the cheese thing, so thank you very much Eve for your tip, but my cool box will contain, Collier's Extra Mature Cheddar, Cadbury's dairy milk chocolate, mature Cheddarie Spread and Saint Agur Blue Cheese Spread. Crazy. It is French but you cannot buy it over there. In a block? You can buy it but not as a spread. Great on bread or crackers but on jacket potatoes? mmm !!!!!
Love from Gill xx
PS Jag went this morning. Many tears xxx
Hi Tina and thank you for your good wishes. One thing you did get wrong was Stephen urging me to slow down! I always stuck to the speed limit. It drove him mad He was terrible driving well over the limit hence so many speeding fines even in France.
Hi Eve I am so impressed with you driving your motorhome. It does give me a little more confidence that I will manage to get my little Chrysler PT cruiser there and back OK
Obviously I will let you all know how I get on
Love from Gillxx
Dear Vanessa
Yesterday is history. Tomorrow is a mystery. Today is a gift.
Hold onto that gift for as long as you can
Love Gillxxx
You are right Mavis on Stephen's death certificate no 1 was renal failure and MM only came in at number 2
Dear David
I am sure that I have posted this before but OK I am repeating myself
As much as Stephen's death (11/9/2012) was the most heart breaking thing that I have ever gone through, at his funeral we celebrated his life.
I don't remember a great deal about it. My heart was so shattered. Yes black coat,skirt and cream blouse (it was Stephen's coat not sentiment just "gosh I put on weight and his coat fits me")
I wore a very smart red hat and a purple pashmina.
I know my clothes may seem strange but see below and I cannot believe how I kept it all together. At the service (Celebrant) I stood up and talked about Stephen. Mostly complimentary, but not all. His employees nodded their heads a few times, when I spoke about him being fair but a bloody hard taskmaster. I spoke about what he meant to me, the kids, the grandchildren, etc.
I finished with this. It is by Jenny Joseph and Stephen loved it
WARNING
When I am an old woman I shall wear Purple
With a red hat which doesn't go and doesn't suit me
And I shall spend my pension on brandy and summer gloves
I shall sit down on the pavement when I'm tired
And gobble up samples in shops and press alarm bells
And run my stick along the public railings
And make up for all the sobriety of my youth
I shall go out in my slippers in the rain
And pick flowers in other people's gardens
And learn to spit
You can wear terrible shirts and grow more fat
And eat three pounds of sausages at a go
Or only bread and pickle for a week
And hoard pens and pencils and beermats and things in boxes.
But now we must have clothes that keep us dry
And pay our rent and not swear in the street
And set a good example to the children
We must have friends to dinner and read the papers
But maybe I ought to practice a little now
So people who know me are not too shocked and and surprised
When suddenly I am old and start to wear purple.
Fingers crossed for you that you have many more years to come
Love from Gill xxx
I am thinking of you both
Dear Mari
My Stephen died last September. He had mm for 4 years and was told he had 2 years left. That was not to be and he was dead within 4 weeks aged 57.
I probably have quite a good idea how you are feeling at the moment. Your last line really made me cry because that is exactly what my husband was to me.
You will be very busy over the next couple of weeks, but after that, when things are quieter do come back here and get support.
I hope whatever service you hold for Stephen it is a celebration of your lives together as well as a time to mourn your loss.
Much love from Gill xx
It is not often that I post. Eve, I have no idea what will get you through this, but you will get through Slim will cope. Better than you think. Stephen died last September. He was more worried about me than him.
Stephen could never remember this saying it but he liked it anyway. Yesterday is history, tomorrow is a mystery there is just today. Take every day that is left and make the most of whatever is there.
My heart really is with you. Stay in touch when you are able
Love from Gillxxxx
