So pleased, for you Rosie and DH have arrived in the UK and have started to meet up with the family, how lovely to be called a super hero Mum 🙂 I don't blame DH for being worried it is hard not to stretch your back to much and at the same time try not to be too tense, make sure the pain killers are still being taken by DH at reglar intervals, we all know what men are like they put on a brave face then, out of action. You must both try to relax as much as possible before the weding now, have a wonderful time both of you, you have had a long journey in more than one way!
My appointments on Mon all went well, but sods law I was seen early by the oncologist because three previous appointments had not turned up, which in turn meant I had two visits to the cafe one between the blood being taken in chemo dept and the oncology appointment then another one in Tottenham court Road to Nero's, because I was two and a half hours early for my radiography planning meeting, tatoo's and CT scan. I did wonder around for a while in the shops and bought a little presy for the chemo Nurse and another for one of my collegue who is leaving from my work place, a delightful girl who has been covering a lot of my work while I have been off. Unfortunately her work permit will run out, she will be going back to India and then on to Australia to work again, very exciting, she has not seen her family for four years, I am not sure I could manage that but she tells me she went to boarding school from a young age, so talks on the phone most days instead! I gave up wondering the shops after an hour or so because not only was I feeling quite tired but the heat was getting to me a bit, UCLH radiography said you do realise you arer an hour early, I acknowleged, yes, but I would wait patiently. All went well at the appointment and also the chemo appointment yesterday, last one and PICC line removed!! 🙂 Just waiting for the SE to kick in one last time. I went on a bit of an mad one last night after getting back from the chemo dept, cooking three meals simultaneously, Lamb stew, Cottage pie and Smoked Mackerel fish cakes with mixed turkish salad and asparagus, the first two were for the freezer in case I don't feel like cooking in a few days, I went to bed about 10.40 exhausted, but it looks like my daughter managed to fit all of the boxes of food in the freezer OK, I have been a bit obsessed with making sure we have everything in just in case, I am turning into my Mum, bless...
All ladies finishing treatment and not sure what to do.
With my GP practice managers hat on now, please take any unused medications to your local pharmacy it is there resposibility to dispose of them safely, gp surgeries do not have fthe facillties/collections for medications some pharmacies however do not take needles so best to take them back to the hospital who gave them to you for disposal.
Sorry once more not to name all ladies individually but the memory is still not great and it has taken me some time to catch up with reading the thread after a couple of days being busy.
X have a nice day ladies
Rosie - so glad to hear you made it!!! You must be exhausted after all you've been through. Enjoy!
Nellie - hope you've had a relaxing day of doing very little. I've had a very quiet day. Catching up on emails and admin but taking it slowly and not putting any pressure on myself. I've done some pilates and meditation and will go for a walk this evening after dinner. Trying to take my boyfriends advice of "do nothing and rest afterwards"!
Lovewine - we didn't actually have the time to look round Solva so not sure about the Window on Wales. We could have done with a few more days there really but squeezing it in to school holiday dates, other holiday plans and picking up my sister so it was just a mini break.
Wildpurl - i hope you had a good day working from home. One of my tasks this week is to send a proposed new working plan in to work. Will take some juggling to fit in childcare and reduce my hours for a few months and still manage to get at least a day to myself to relax and catch up and concentrate on my health.
Cassie - i hope things have gone smoothly for you today.
I hope everyone else's day has gone well, whatever you are up to.
Busy day for threads yesterday great to see lots of good news and happy holiday stories.
Rosie I am on the edge of my seat - DH stitches on the way to the airport - flight delays….. I pray you are alright.
Cassie A massive good luck for today - I hope the other appointments went ok yesterday.
Wildpurl Your 80’s night made me smile. I love French onion soup but whenever I have tried to make it, it has ended up as onion gravy on bangers and mash!! (tasty but not quite right!) Have a massive glut of cucumbers so looking for soup recipes that use more than half of one to try later in the week. It’s funny so many of us are feeling a bit lost without the routine of chemo - I can’t get my head around being able to plan things in advance - exciting but scary!
Joan I too am considering vitamin tablets so asked oncology nurse last visit. She said to give it a month for your liver to recover and the last of the chemo to completely go before starting. Apparently some vitamins can bind to the chemo and stop it working, and your liver has to work very hard during treatment so needs to recover a bit. I was going to look for something to support energy levels, hair and nails, immune system, and blood - might be quite a big tablet!!
I think your surgeon has given you the same follow up as me, which after much googling seems to comply with the NICE guidelines but I still intend to query it at some point. Thanks for your helpful comments Alice - maybe we will hear more during and after radiotherapy.
TIj Thanks also for the sensible comments and reassurance about scans/follow ups. I did read that most problems are picked up fairly quickly by the patients anyway so they are not really necessary. Just feels scary to be put back in charge of myself! I would like an annual full body scan but don’t think that will happen!
Rolicarpet Sounds as if you have had a lovely holiday and all the best for the radiotherapy. You really are starting the home run now I hope you don’t have too far to travel. I definitely agree hair growing back over 6 months scarier than falling out in two days. I am not sure normally I would have the confidence to say something to a stranger in a pub - but possibly after attending some of the courses I may be a bit stronger.
Jos, What lovely news about your AC response and finishing chemo. Hurray! Your holiday sounded super - one of my favourite parts of the world. I am glad the whole family enjoyed themselves and you have your sister arriving to look after you. I hope you can hang on to all the lovely memories and not get hit by the chemo grumps!
Nothing planned for today just sleep and sofa, that way if I manage to get anything done it will be a bonus! SE’s seem to be kicking in earlier this time so maybe they will go quicker? Fingers crossed as I want to be able to taste my cucumber soup!
Good luck to everyone for today,
Thanks Lovewine. Not many of us left for the surgery then. Still seems like a long way to go but so pleased to be putting the chemo behind me. We were other side of St David's near to Solva. Amazing weather - very lucky.
Thanks Wildpurl. Yes, I feel I should be leaping around with the excitement of reaching this milestone but just feeling really tired and emotional. Fingers crossed for a good sleep. I had my next oncologist appointment through for mid November!!! That felt very strange indeed.
Hope you're getting your restful evening with a nice plate of risotto.
So much activity on this board since I went away! Sorry not for replying to all individually but glad to see you all getting out and about, working, hosting parties and BBQs, going on trips and making the most of your days as much as possible under the circumstances.
Rosie - hoping your journey is going well. So pleased to hear you have got through everything and will make the wedding.
Lovewine - delighted to hear it was a seroma that could be dealt with.
EAM - glad your daughter's party went well.
Cassie - hurray last chemo tomorrow.
Lisa - good luck with radiotherapy today.
Joan - I am one of the ones with surgery still to come.
So I had a lovely break in Pembrokeshire. Warm and sunny, different beach each day, a lot of hammock time back at base and had loads of lovely food which I didn't have to cook myself. The children had a brilliant time - my daughter 7 and OH's two boys, 6 and 4. Collected my sister from the airport on the way home so at last I have help in the house and get to hang out and chat with my lovely sis for the next 7 weeks.
And as if that wasn't enough excitement, I'm just back from my last chemo!!! And my PICC line is out!!! For those of you concerned about PICC removal don't be. The nurse asked me to cough twice and as I did she pulled. It took about 10 seconds and didn't hurt one single bit. I just looked down at the tray and thought, gosh has that really been in me for 3 1/2 months?!
To be honest I feel a bit strange now. Obviously relieved and excited to get to this milestone but also a bit emotional and flat. Very tired too. But, onwards.... The usual side effects to come but great knowing that they will be the last lot.
Also to report my MRI scan reveals I have had an "almost complete response" to chemo. The lump is a quarter of its original size (6x5x4mm), no sign showing up in lymph nodes any more and the few small additional patches in the breast have gone. I have surgery in two ops - 26th August for the lumpectomy and 9th September for the LICAP part.
So all as good as can be expected at this stage I think. My new "worry spot" is now lymphoedema. Arrgghhh - it seems neverending!
Have a good day everyone.
Rosie, just dropping in from February to wish you well. I have been following your saga with amazement, sympathy and admiration! I hope all goes well and you have a wonderful time at the wedding.
Nellie, I am also triple negative and have just been signed off from treatment (op, chemo and rads). There is a system of follow-up at my hospital: I see the surgeon next month, and the breast care nurse in September (something called a Health and Wellbeing Clinic, run in conjunction with Macmillan - though if they ask me to meditate or talk about my 'journey' I will run a mile!). I already have a mammogram booked for late November (almost 12months to the day after the scan that started this whole thing off) and will see the oncologist the following week. After that I don't know who, if anyone, I see and when, but understand there will be a yearly mammogram for the next 5 years. Apart from that, I can't wait to get back to a normal life!
Best wishes, A
Rosie good luck with the journey, you seem so have a never ending list of challenges, I am sure this one will be fine as DH to go and take a seat or nip off to the loo sh he won't be tempted to lift the cases. I will be willing you both on your way to the wedding.
It's really nice to hear about sleep overs and all the normal things in other peoples lives it is really admirable, I know that we have all been given no choice in having BC but it seems to me we are made of the right kind of stuff to deal with it and manage to do as much as we can in our day to day lives, enjoy what we can and have a good time.
I am in the process of getting ready for three appopntments today and 6th the last chemo and PICC line removal tomorrow. Have a good day ladies
Joan sorry to hear your temperature rocketed again, I must be such a worry. I don’t understand why the zarzio has caused abnormally high white cell count but sounds better than too low? At least you know you have some cells in your blood! I have found I have been quite breathless day 2 and wonder if that is due to low red cells or one of the other SEs…… not a problem though.
I agree I have ditched all my scarves and head coverings in the heat for regular activities but did dig out a pretty one for going to the restaurants last week. Don’t know why but it felt the right thing to do?!
Must be a little alarming about your registrars passing comment - when will you have your formal discussion to find out for sure? It must be difficult to decide between a lumpectomy and mastectomy if given a choice but I think I would select the latter in the hope of less recurrence chance. As you may have picked up I am getting very fed up with the lack of knowledge here on triple negative and will be interested in what you get offered for your follow up plan at the end of your treatment.
Lovewine I am jealous you have invested in a fondue set! It was one of those 80’s gadgets we had that got ditched in the house moves over the years. Wish I had hung on to it now but not sure eating loads of cheese will do the waste line much good! Do you have to use special cheese I can’t remember? Thought I might have a go in a little cast iron milk pan I have especially as I seem to be able to taste cheese!
Wildpurl thank you for the link to the hair website -very clear and useful advice on colouring and care of new growth. It said that radio therapy can further delay hair growth but did not elaborate if this was only if you were having it near your head eg for brain cancer. Either way it does seem like it’s going to be a long process. I hope the living well course will give some hair styling tips as well as make up.
TIj. What a joy to be clearing out the medicines! I have quite a pile set aside to return to the GPs on Tuesday. (they collect it for the third world I think) I hope your energy levels continue to improve and isn’t it great to know they won’t crash again in 3 weeks! Hurrah! My dogs won’t know what’s hit them!
Rosie I have my fingers (and toes) crossed for you and your travelling. Well done for finding an old friend on Facebook - I’m not that up to speed on that sort of thing. It will be good to share experiences and gain confidence from another’s success as well as catch up on old times.
Our BBQ went well yesterday - just extended family so they all helped massively. I was rather tired and as my daughter said very grumpy! OH commented I was ‘T & G’ but as he had been rebuilding a bit of the shed earlier my chemo brain decided he was suggesting I was ‘tongue and groove’!! Snuffley daughter and sister packed off to visit best friends near London for two days. They were very excited to be going on their first big train trip on their own - I was somewhat relieved when the got there safely!!
Good luck today ladies whatever you are doing,