This topic contains 19 replies, has 9 voices, and was last updated by 
PatG 11 years, 6 months ago.
I have just finished cycle 6 VCD and have come to the decision that the side effects of all this poison I am taking has to be addressed. While I get two goodish days while on Dex(notice the time!) I have enough roughish days where I can do very little (very shaky, breathless and oh the PN) – so I have taken the bull by the horns and am getting quotes from some local cleaning companies so that at least I can stop whittling about the state of the flat. The washing, ironing and cooking are still OK but because I am spending much more time at home I get quite agitated and certainly notice the things that are not being done, whereas before, I think I was just too busy. I am very concious that Kev works full time and is using his weekends to keep things looking OK, and to be honest, I would prefer to be enjoying the things I am able to do with him rather than mundane tasks. So…added to the cleaning I have the groceries delivered too. I have to admit to a lot of guilt feelings as before I always did everything, but have finally come to the decision that the more help I can get the better. I will be formally retiring at the end of July when, barring no set-backs, my treatment will be complete and I am in the fortunte position of being on half salary until that time, so for the time being I can afford it. I will be 68 in August and hope that with the good results continuing(FLC down from 133 to 29 at last reading)it will be time for me to do other things, although I will miss the interaction with the undergrads. They do keep you feeling young as well as very maternal in some cases! I will be attending graduation in July as a guest rather than a 'all hands on deck helper' and am really looking forward to the celebratory lunch we give our graduates after the degree ceremony in the morning. It is so nice to meet the parents too, such a lovely day. Good weather always helps too, fingers crossed. Got a bit off track there, blame the dex, but what I am trying to say, is that the physical aspects of all this drug taking are hard but understandable and doable, but the physcological aspects are, for me, much harder. It would be so easy to slip into a depression which can be no good at all in fighting this battle and I am so in awe of those of you who are winning this part of the war with much worse to put up with I have experienced so far. I am quite sure that reading your posts have helped me see that everything is transisent. We are not here forever, whatever our condition, and we must make that time with loved ones count. They are after all a large part of what makes our lives worth living.
Forgive my dex ramble, there is a point in there somewhere.
Love to all
Pat
Hi Pat
Yes there is,I stand in amazement at people who do not get help in the house ,but if cleaning floats your husbands boat????,it's ok. I intend to spend as much time with Slim,not cleaning,less cooking and more going out.
As for depression it must come with the territory ,its the ability to recognise it,do something about it,and not worry about popping a pill,the big thing is to have no regrets. eve
Go for it Pat
If you can afford it why not I am not a great house wife if you dont move things you dont notice the dust we go out a lot if we can Your results sound good so perhaps not much longer for treatment I am on cycle5 get swollen ankles a bit but ok other wise the graduates sound fun they must have tsken you under their wing a surrgate granny. I will be 66 in June so we are not too far apart going for another colour next week!!!
Love Jo x
Hi Eve
been meaning to ask you how is slim doing is he well now did you manage to get his scan i know you were worried about it
Regards Jo x
Hi Pat
Well I for one don't blame you getting a cleaner in and I would take the glasses off till he/she starts then you wont see the dust Lol.
Keep taking the Tabs Girl you are moving the correct way.
Love from "Dusty" Tom Onwards and Upwards. xxxx
Hi Everyone
Getting a cleaner is the best thing I did,only 2hrs but makes a difference,mind you she sought of hinted about my 20 year old dyson,and she did bring her own steamer,I went out and bought one the next week,no doggy smells to be found,when Slim has a moan about her moving things,I have to have words with him,he has old man syndrome ,everything at arms length.
Jo I am waiting for next BMB on the 7 th,Slim is now using sticks,he has body pain all over,if it was localised would have a better idea,he has defiantly deterioted over a short space of time,found out from Ellen how much it would cost for a PET scan,so have it ready in the pipe line.
Tom men do not notice dust in fact rooms are round when it comes to hoovering lol.Love Eve
Hi Eve
Might take a leaf out of your book as am running around trying to fit everything in. Every time I feel like baking or not using the dishwasher, I can hear you say make it easy on yourself. Still working 2 half days and one full day, running to the hospital and taking in meals for Ian. His bed sore is healing and he is now allowed up in a wheelchair for 1 hour a day. He is also in the gym doing some weights and excercising. I keep hoping that he will be home soon. Back to larbert on 13 May to find out if the myeloma is stable. Fingers crossed.
Sorry to hear Slim is having a hard time of it. Ian is on no maintenance drug but I am going to follow this up as we still have private medical insurance.
Hope life gets better for you both.
Love Maureen x
Hi Pat
I think you just have to do what is easiest and best for you, like Eve says ' no one ever regrets leaving work' I'm still plugging away at it but I'm very lucky, though not sure for how much longer. After I start the velcade I will see how I feel and maybe make the decision.
I hired a window cleaner today, and am seeing a cleaning lady next month so that if I feel like doing anything I can and if I don't, then at least it will be done.
Eve, give slim a gentle hug from me and tell him i understand how tough it is, i know the bmb is horrid, they made me have sedation last time because he wanted ' a big sample' , I must say it made a difference at the time but I still couldn't sit down for a week.
Love Helen
Hi Everyone
By the time Pat reads these post,cleaner hired plus making lots of arrangements,away from work!!!
We were lucky we had a good head start on all of you,over a short period a long time ago,we made big decisions completely changing are life's ,sold business kept a small flat to let,and off we went,dog as well,travelling everywhere in a Motorhome,had a wonderful 10 years,so we do not have any regrets,the only thing is we would have liked more travelling ,but can only do it for short periods now.
Seriously I think anybody who does have a wish list and does not start doing it now!!! Will have regrets.
So Pat take a deep breath,there is so much to do and enjoy ,you just have to have the health to enjoy it,give hubby a break get a cleaner,spend money and help the economy. Love Eve
Hi Helen
Slims ok about BMB he has had at least 6 says its not pleasant ,but would rather know the situation with Myeloma.
Only because we have been hear before the symptoms are all there,fatigue big time,body aching all over,colouring not good,appetite small,going backward with health,Slims a stubborn man takes a lot to admit to pain,but consultant words were,you should not think every pain is Myeloma !!!! Helen giving Slim any form of a hug is painful. Love Eve
Hi Pat
I'm with everyone else. I'm sure you will quickly adjust to retirement. There are plenty of other things to do in lif!
If you find time on your hands, it isn't for cleaning, or in your case shopping, but for doing the things you value most. I still have to take up the idea from Jet's Blog, to list the 50 things I want to do before I die. Perhaps that's an activity for you when you finally do retire!
Let's hope we all have time for more than 50.
Good luck with the rest of the treatment. Is this your second fight with MM? I can't remember.
Love.
Mavis x
Hi Jo
Glad to hear your treatment is going OK. How many more lots have you got to have. You know I watch you closely as another none ScT member of the Site!
I am going well, apart from an outbreak of cellulitis in my legs, not too serious, and lots of back pain. However, have just booked our flights to visit my daughter in Luxembourg in June. Have arranged to take my electric buggy with me!
Lots of. Love.
Mavis x
Thank you everyone for your encouraging messages.
Hi Mavis…I have AL Amyloidosis, similar to mm but without any bone problems and therefore no pain for which I am eternally grateful. It affects the organs, in my case kidneys, liver and spleen, but like mm is very individual and varies in each person. The treatment is down the same route as mm as most has evolved from research done in this field, but no SCT is offered. At the moment I have just finished cycle 6 of 8, velcade and dex weekly for 4 weeks, cyclophos for 3 weeks then a week off and on to the next cycle. What happens after that is, apparently, 6 weekly check ups to determine if the FLC are increasing and if so treatment begins again. As with mm there is no cure and the hope is that in remission the organs, particularly the kidneys start to regenerate. So the fight is the same, the outcome is the same with a time line of about 10 years at best and this site has been a godsend. I do feel very involved in all the journeys and follow them with growing respect and admiration. Love the idea of 50 things to do before I die. The first one on my list is to visit my daughter in Canada and see my new grandaughter, adopted in January this year as a preemie baby and now over 9lbs and doing so well.
Hi Eve….you have such good Yorkshire common sense and as a Lancashire lass that's quite an admission:-) It's nice to hear some straight talking and I applaud the measures you have taken to enjoy your lives together. I do hope Slim gets some relief very soon and the bmb is not too painful, not something I enjoyed at all!
Hi Jo…You are dead right about surogate granny. The things I get told at times!!!>:-) Glad to hear you are coping well with the velcade. I have 2 days where I retain fluid which makes me breathless and gives me a bit of ankle swelling. Have got pills for if it gets too bad but don't like taking them as they lower my already low blood pressure and give me other problems like passing out once! Good luck with your hair, mine is very short now, had it cut as the hair was so thin I couldn't make it look anything like. Still dyed it blonde though, couldn't stand the grey as well and have a funky wig for when I want to look 'normal'. Course Kev says I will never be normal……don't know what he means;-)
Hi Helen….hope you cope well with velcade and that you do not have many side effects, always different for everyone so good luck. It does seem to tackle the mm in quite a lot of cases, but so sorry to hear about your relapse. Your hair sounds nice and lovely to know that you can keep your new colour, it all helps.
Hi Tom…if I make any spelling mistakes it's because I can't find my glasses:-D Thank you.
Good grief, I have written a book and on a dex down day too! Thank you all, you are sooo supportive and I really can't thank you all enough.
Love to all
Pat
xx
Hi all you are all so inspiring to me and i pass this on to Mum who has come home and is doing well with Dad who is so supportive of her and he was one who shunned illness so its been hard for him too. They to are considering and cleaner and having someone to do a bit of gardening, and it great if the person coming in is a cheerful, wishing you all a lovely weekend with good weather too San xxx
Hi all,
Completely agree with all this – my Mum with MM lives alone and has a home help, gardener and I do her shopping each week (I have it delivered to me with my weekly shop and take it round to her every Saturday). I would never manage to do all the cleaning and gardening for her and the attendance allowance helps with costs. I am still trying to find a hairdresser to visit her at home…!
Unfortunately the effects of MM have been much more on the mental side for my Mum rather than physical, she is constantly bordering on depression which is quite wearing at time. I have tried to discuss this with the doctors but understandably they are really only interested in treating the illness. I do have to do a lot of morale boosting…
Take care all,
Jillx
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