Sorry, I haven’t been on here much since early December but life was very hectic both at work and at home for several weeks
I’m still doing fine on Gilenya and had my first check up with MS nurse (all fine) in December which coincided with the first winter storm. The result was that trains northward were cancelled for a while and my friend and I (amongst hundreds of others!) were locked out of Cambridge station until trains were running normally again. It did not occur to the ‘powers that be’ to put extra coaches on the train with the result that it was standing room only until Ely and there was also a speed restricition so it was a very long journey. We still had a difficult car journey after that through much woodland so were a little nervous in case there was debris on the road and arrived home just in time for the high tide to breach the sea wall (luckily neither of us live that close to the sea but we could see it from the car).
I was then called for routine breast screening at my local hospital. Norfolk has been calling women from the age of 48 for the past year or so as a trial. When a letter dropped through my door a week later I was expecting it to say ‘all clear, see you in 3 years’ time’. However they were asking me back for further tests within a couple of days. They took a biopsy and I went back a week later for the results, on 19th December. I was very relieved when the doctor told me it wasn’t cancerous but there is an 8mm area of tissue that they would prefer to remove anyway as it may cause problems in the future. It is the kind of tissue that may have a higher risk of becoming cancerous in the future. Although it isn’t urgent they had a slot free next Thursday, so that is when I’m scheduled for surgery. This area of tissue cannot be detected other than by mammogram so it wouldn’t have been picked up except by breast screening. I’m so glad Norfolk is starting screening from 48yo. Whilst it may not have caused any problems in the next 2 years, by being removed now, there is no chance that it can cause problems. I’m not sure I like the sound of having a wire inserted by the radiographer to guide the surgeon to the right area but I’ll trust them as I’ve had such good service so far
I do, however, have a massive sense of guilt about work. I’m back to work after the Christmas break on Monday and then I need Thursday and Friday off. I’ve been told to make sure someone is with me on Friday to keep an eye on me in case the general anaesthetic has any adverse effects and to definitely not go into work. I’ve already had about 4 full days and 2 half days off work since September for hospital appointments and three sick days (viruses). I have provided hospital letters for every appointment and work haven’t questioned my absences at all but I still feel so bad, mainly because another member of staff has to cover the basics of my job as it isn’t something that can be left for another day.
I already have a further 3 medical appointments on the calendar so far. I’ve been teasing my dad that my calendar is beginning to look like his, ha ha!
Happy New Year everyone, I’ve already decided that 2014 is the year for lots more hospital appointments. Is it too early to start hoping for better things in 2015 ;-)? By then, I should be settled on Gilenya and hopefully back to six monthly check ups and my body had better not throw up any more surprises.
Hi Tracey, Great the Gileyna is working so well for you. I can totally understand the work guilt thing. BUT it’s not your fault it’s what you have to do for this horrible disease that invaded all our bodies without an invitation - how rude. Seriously don’t feel guilty. Your work colleagues would do the same if they were in your shoes. Have you spoken to the other staff who have to cover your work. Maybe they are quite happy and understanding - hope so. Hugs Min xx
I’m in North Norfolk, on the coast. Luckily we weren’t very badly affected by the last storm surge and not at all affected by the latest one. I never thought I’d say this but … I’d rather have snow!!
I don’t know much of Suffolk very well, just bits of the coast, the Suffolk Wildlife Park at Kessingland and Bury St Edmunds.
I’m a bit nervous about next week but just really glad it’s not cancer. I’m a strong person and I believe you have to cope with whatever life throws at you but I did think I already had enough on my plate at the moment. There’s also a lot of personal family stuff going on as well so that might have broken me. My heart goes out to cancer sufferers as I had 24 hours to worry about it (I did firmly put it out of my mind until the night before I received the results). That was just a small glimpse of what they go through …
Yes, in fact I bought a Christmas present for the lady who covers the bulk of my work whenever I’m off. She does keep reassuring me it’s not a problem but I’ve never been work shy and it just feels wrong to have so much time off.
It’s just that I have to post a message on our internal message board to make sure everyone keeps her up to date with important information when I’m off so it’s obvious to the whole school staff whenever I’m absent and I just think that some staff must think ‘good grief, she’s never here!’. The staff are all aware of my MS as I hold a Cake Break every year to raise awareness and the majority are very supportive (there are just the odd few that dislike me - and I don’t care for their opinions anyway).
So I don’t know why I feel such guilt especially when our HR chap has reassured me that over several years my sickness record has been betterthan somestaff who don’t have a chronic illness! It’s totally irrational …
It’s good to see you back, all the best for next week. Don’t feel guilty about work I am sure thay understand and support you, ( Easy to say I know because I get guilty too when I have to take time off even though my boss is extremely supportive)
however i have found they dont talk to each other! they r all doing their bit but no-one pulls it altogether. (which should be gp i guess but hes been missed out in my current goings on)
so i will see him on mon so he knows about biopsy, liver scan and mri (all done 20-24dec) and i will tell him why i have cancelled diabetic and weighloss clinic next week! (i am not diabetic and have lost 5 stone!) i will go to the new appt in feb cos by then the results of mri and liver scan will be known. just as well i am not a panicker/worrier and have some understanding of where the nhs fails to deliver.
to be fair- the guys that done the mri and liver scan were not happy that they hadnt been asked if they could change either of the appts so i only had to go one day to hosp. but once they had both seen how difficult it was for me i dont think that will be a prob in future! but then the receptionist had no idea if i was a chancer or am really struggling…
my name will prob have a big red star with a warning against it at hosp now!
Good luck with the op…what a bit of luck that you had an early mammogram…it may have been a different story 2 years down the line…so you are fortunate, although it`s not a pleasant thing to go through.
Look forward to seeing you back after your op.
Dont fret so much about having to miss work throguh illness…you cant help it and Im sure they know that you are a good worker.
Things are already getting better- stay positive! You’re on Gilenya and the tissue is going to be removed, before it becomes an issue . It’s all good, in my books.
Happy Spring Time (cos by then, everything will have settled down completely- think lovely Daffodils!)
Hi Elmo I know what you mean about the guilt thing. I have 4 appointments in January during working hours. One for my ms nurse, one for an MRI, one with the neuro (with MRI results) and then my monthly tysabri appointment. I give them copies of all my appointment letters and they’re being very understanding about it but it’s hard cos I have weekly targets which I find hard to achieve due to all the time out of office. Am also job hunting and worrying about time off if I need it for interview - I work term time so cannot take holiday and would probably need to take it as a “sickie”. Good luck with all your appointments!
It sounds as if you are having a tough time. That’s why I hate missing so much on the boards, I miss out on what’s happening. I’ll keep my fingers crossed that your results are good. I’m like you, I don’t believe in panicking/worrying as it doesn’t change anything. They told me at the breast care unit that I was taking it all very well on the day I had the biopsy but I told them they until they told me the results there was no point in worrying. Maybe MS gives us some important skills after all, eh?
Thanks for your good wishes, it sounds like a fairly routine procedure so I’m just hoping they do have a bed for me this week so I can get it out of the way.
Good luck for your results, I’ll be thinking of you
That’s exactly how I feel, really lucky that it has been caught so early on before it can cause any problems.
The only thing that worries me about this week is that the hospital are releasing me on the same day (providing there are no complications) into the care of my 20 year old son for the next 48 hours. EEK!!!
Snap! I work term time only too and yet all my appointments, apart from my pre-op assessment on Friday, have landed in term time. I do usually arrange my full annual review with neuro in the summer holidays but I didn’t know I was going to be switching DMDs this year which has resulted in so many extra hospital appointments. I’m sure once I’ve completed a full year on Gilenya, providing it works and I have no more relapses for a while, I can return to a healthy attendance record again. I really have to stop being so embarrassed by it as I can’t help it, but putting that into practice is quite another thing. If only I could be one of those people (and we do have a few) who have no shame in taking days off every other week for random minor illnesses. We even had one who took a couple of days off because she ‘had to put eye drops in 4 times a day’!!!
Well, I’ve just seen my line manager and broken the news that I will be off Friday recuperating from Thursday’s surgery. She took it quite well really considering that yesterday I sent her photocopies of my next three appointments:-
Physiotherapist visiting at home next week - will pop out of work for as long as it takes and probably stay a bit late to catch up afterwards (mainly due to guilty conscience!)
6th Feb - half day absence for eye clinic appointment. This is to check for a rare side effect caused by Gilenya. Luckily the appointment is in the afternoon so can work for a while in the morning before catching the train.
6th March - full day absence, nurse check up re Gilenya. This one is a late morning appointment so no point heading to work first.
It’s just as well that I do get through quite a bit of work when I am here. Talking of which, I’d better crack on
