miserable today!

I cried ror the first time today, all because I received a letter from the hospital giving me an Orthotics appointment for 9.30am YESTERDAY.
The letter was dated 24th November and franked second class 2/12/10.
I opened the letter and just cried uncontrollabley.
I’m on my own as my husband’s shift doesn’t finish until 8.00pm. Just as well because I wouldn’t like him to see me out of control for the first time since the diagnosis 14 weeks ago.
All is OK now as the appointment has been re-scheduled for next week.
It seems such a minor thing to get upset about compared to the mx and chemotherapy.
Also my med cert runs out next week and I really don’t want to have to go to the surgery in case I pick up an infection.
It’s 9 days since I had my first FEC. Is it normal to feel so down at this point?
I will have to put on my “brave face” on Sunday as we are going over to my son and daughter-in-laws to celebrate his birthday. Of course they are concerned and will ask me how I am and I’ll say that I’m fine, chemo’s not so bad etc. etc.
Right now I feel very cowardly and sorry for myself.

Huge hugs mouseybrown - don’t know if it’s ‘normal’ or not cos you’re a bit ahead of me on the chemo front - but sounds perfectly plausible to me.

No matter how well we carry on, there is no disputing that this bc is SH*T, and you are absolutely entitled to break down and wail when you need to.

I think the little things upset us more because we’re not steeling ourselves to cope with them… dx and mx and chemo are all so huge that we have all our fighting skills ready… a screw up on a hospital letter hits you out of left field! (Apologies for mixing my metaphors!). Can you phone your GP and ask them to post you a new med.cert? Or ask OH to collect it for you?

You’ll have your brave face ready for Sunday, but it will be horribly achey if you don’t relax it between now and then and howl when you need to.

Sophie xxxxxxxx

(and cowardly? Don’t give me that bull… nothing cowardly about it)

Thanks for replying Sophie. I didn’t think I was going to get any comments.
I’ll take your advice and ring my GP next week to try and get med cert collected.
One piece of good news this week is that I’ve now got my proper prosthesis. They are going to send me a free pocketed bra via the post. However Mr Prosth sits quite well inside my normal bras.
However I’m scared of wearing it out so it’s sitting in its own lovely blue box waiting to be used for best!
Wendy

mouseybrown Hi dont feel guilty for feeling down sometimes we all have to have days like that you,ve been through such a lot already and and its a lot to contend with and its so normal for the slightest thing to set us off cos we feel so vunerable at timesxxxxx sending big hugs and hope tomorrow brings a better day.I just used to ring my GP and he was happy to give me another medical cert without seeing me ( he knows i was on active treatment ) and i used to get 3 months at a time because you 'll know youre treatment dates so just ask him to give you one untill end of chemo and save you frequent trips to the surgery xx take cate Julie

Wendy, you could sort of do a trial run and take it out for a walk in its box… then in your handbag, and then gradually it could work its way up to your bra!!!

Honestly woman, what are you like?!! Wear it around the house doing all the bending over, sitting down, turning round stuff, then you’ll know it won’t fall out and you’ll be more confident with it!!!

Sophie xx

Or did you mean wear it out in as such as it falling apart if you wear it too much? :slight_smile: Just occurred to me!!! I think they’re meant to be good for a couple of years, so unless you’re planning on juggling with it, or ten pin bowling… it should last a while!!!

Sending you a big hug!!!
You are entitled to miserable days, this whole cancer crap is, honestly, crap!! Its relentless, BUT, it will end and you will get through it, so mope away!!!
Kerry (who has visions of a boob walking round on a dog lead thanks, spohie!!) xxx

Massive hug to you. it is always something small & unexpected that sets you off.

I agree - call the GP for your cert - I email mine & then get OH to collect for me - they have all the info they need & don’t need to see you to sign you off. reminds me I need another one - So thanks

re prosthesis (took 4 attempts to type/spell that right) - you can get another one if it does wear out anyway so I agree - if you are comfy wearing it then wear it as much as you want.

re needing a brave face sunday - you may well have a genuine OK one by then. this all seems to be up & down day by day - I never know HOW I’m going to feel tomorrow & just try to go with the flow - so if you feel good enjoy it - if you feel bad take heart that tomorrow you may feel differently - & for no apparent reason

It took me until chemo 5 to realise that I always felt depressed at the start of the second week after chemo. It was only because I kept a short daily record that I picked it up so maybe you are experiencing the same side effect. Anyway hope that you feel better soon. Sometimes it helps to let it all out and it is always over the little things isn’t it? Px

Dont be hard on yourself chemo is very difficult and messes with your emotions let your family know how you are feeling dont try and hide it you will only feel worse im sure they will be behind you 100% you need all the help you can get its good that you have let some tears out dont hold back try and not be so down it will get better trust me on that

Hi mousey - lots of words of wisdom so I wont repeat it all. Just wanted to say that when I was going through chemo we were told that it was a slow drop down to days 7-10 when we would be at our most vulnerable, weepy, prone to infection etc. Then as the white cell count started to rise towards the 3 week mark things would get better. Generally through quite a number of different chemos I found this to be true. Hope you have a good weekend. I find with my prostheses (2 so plural LOL) that they last well, worn every day, for about the 2 years till they replace them.

Dawn
xx

Hi mouseybrown, just wanted to add my comments to all the others. I’m on my fifth cycle of FEC and I’ve found in each cycle so far that the worst days are usually days 5-10 and then I start to pick up in the second half of the cycle. I get tired and sometimes quite low which I think is very normal. Don’t be hard on yourself - far from being ‘cowardly’ you are brave to go through this chemo thing, as we all are - it’s not nice. But my experience tells me there are good days as well as not so good.
I’ve had a mix-up with an oncology appointment this week which I’ve been trying to sort out and you just don’t need that sort of thing on top of everything else!
About your GP note - my GP told me a while ago that they will sometimes do sick notes over the phone in certain circumstances, and I’ve had other people pick up sick notes for me before now so I don’t think you would have to go in person.

Take good care
Amanda

Thank you ladies for all your very helpful coomments.
I am looking forward to seeing elder son and my lovely daughter-in-law tomorrow. Unfortunately my younger son haa a bad cold and won’t be coming as he doesn’t want to infect me.
The postie has just delivered my free pocketed bra so I will be wearing it with pride!
A question for others with more experience of chemo - am I supposed to take my teperature every day or just for the 4 days of low immunity? Also if it goes above 37.5 during the safer times do I still have to contact the hospital or does this only apply during the dangerous days?
Thanks
Wendy

Hi dont think you need to do temp everyday you know yourself if you are feeling warm or hot take care

Wendy, I sort of got the impression from the chemo-nurse that you ring whenever your temp goes above 37.8… she didn’t say anything about it being only on the low blood count days, so if in doubt, phone the ward. If it’s not a concern, they’ll tell you!! Just keep squeaking, is my honest opinion… :slight_smile:

Sophie xx

Hi Wendy,

I haven’t been around for a few weeks as I have been away. My treatment has now finished apart from an appt at MK Hospatal at the end of the year. I am still very tired and haven’t thought about going back to work yet, however, I am going to start looking for a job after xmas.

I still look on the web for your comments to see how you are doing. How far are you into your chemo and how are you feeling.

Thinking of you,
Karen.

Hi Karen,
Thanks for remembering me!
I had the second cycle of chemo this morning. So two down and four more to go.
The side effects so far haven’t been too bad-the worst is the insomnia due to steroids. Also I am very concsious of my pulse throbbing all the time but that’s due to the steroids as well.
I am going to send you a private message as I have a question to ask you.
Happy Christmas and I hope that 2011 will be a better year for you.
Wendy.

During my chemo stint I just took my temp about every 2nd or 3rd day but I felt my oncology dept. were hyper about it, they said if it went above 37.5 you were in danger of infections and possibly pnemonia which in our state we couldn’t fight so that is why they were so cautious.
Mine was particularly high once but I took paracetamol and it came down as I didn’t have any other symptoms.
There are so many things to worry about during chemo this is just another hindrance!
How far into your programme are you?

Jude

I tend to agree with you Jude over this : the onco nurses were insistent that I came in when my temp was up to 38+ and I was then kept waiting for 5 hours in a very crowded open ‘holding’ area before a doctor could be spared to see me - then given antibiotics and sent home.
The second time this happened I was even more more reluctant to phone up as I knew what the result was likely to be: however, having been warned (and how!) of the likelihood of my death if I didn’t …and also it was a Friday and I knew the week-end is not a a good time to need medical help. I again took the hour’s journey to the hospital and went thro’ the whole charade again.

This time another, after a very long wait , a young houseman ummed & aahed and then decided I had to be ‘admitted’ (to cover his back I guess) It then transpired that there were no ‘female’ beds so I sat in a chair until 10;30pm before a bed was found on a very busy oncology ward. (the lights were still on at 1:30am! I was allocated a bed in the middle of the ward full of very sick people - particularly the woman in the bed next to me who coughed all day and night.
I was told I needed to be in hospital as I needed IV antibiotics - which apparently the community nurses are not allowed to administer; these were supposed to be given every 6 hours but on the ward were given as and when the nurses remembered - at least 12 hours elapsed at one time between doses; other than that I was virtually ignored, had minimal contact with any nurses or doctors and had a most miserable 48 hours until I persuaded the on-call registrar to let me out at Sunday tea-time.

I decided that I would take my chances if it happened again - and told my oncologist that I was not prepared to come into the hospital again - whatever. I am really convinced that hospitals are bad places to be in if your white cells are low- fortunately I was prescribed neulasta inj. before subsequent chemo sessions and had no more probs (? - why are these not given routinely?)

I am convinced to this day that I would have been better - and safer,at home with paracetamol - with the TLC of my family and the servic

Hallo Jude and Topsymo,

I had my second FEC yesterday. I haven’t felt nauseous but I get terrible indigestion. Other side effects are a metallic taste, insomnia and feeling my pulse throbbing in my ears continuously. My hair is now falling out but I’m coping with that.
I’ve got two digital thermometers but they read .2 degrees differently. I also have an old style mercury thermometer which I think is more reliable.
On day 16 my temp reached 37.7 bit I took an echinacea tablet and it went down the next monrning.
However my oncologist says that I shouldn’t take echinacea.
I also had an echocardiogram on 30th November. When I asked yeserday for the results I was told they seemed to have got lost!
Also no meds had been ordered for me at yesterday’s chemo, the same thing happened at the first session.
I’m worried about the long Christmas break.
The hospital I would have to go to is more than 25 miles away and according to the weatherman I could die from hypothermia in a snow drift on the way!
I can’t see anything wrong with taking an ibubrofen to get your temp down if you don’t feel any other symptoms.
Wendy