Evening Marirose
Good luck for tomorrow.
Carolyn
Pleased your scan results were good. Now you can relax and enjoy the summer. Shame about the weather.
Hugs everyone. Linda
Marirose
Hope u have had the treatment now, relieved and pain free.
Loads of hugs and think about sunbathing on a lovely beach with Palm trees and windy Miller serving you a Bailey’s with ice and a nice piece of carrot cake .
???xxx
Hiya marirose
Hope u comfy and not in too much pain . Thinking of you and windy Miller is waiting for you in the cyber cafe …and sends his love too !!!
Loads of hugs???
Hello to all skinny friends
I wrote a long post yesterday it would not send so I messed about and then lost it all so here goes again.
The hotel was a good idea but not so good at this one our room was near the restaurant and the noise stopped me from dropping off so then my mind started to come alive I didn’t sleep at all. The hospital was great it used to be a private hospital so the ward was single rooms with en-suite.Everyone was nice and were all on first name terms. The surgeon came early to see me and marked me up for the operation because there were so many spots he joked about it looking like a map he wanted me to stay in over night because I had come a long way. They prepared me with white stockings gown and Karen my nurse said she had not heard of this proceedure ECT so it was a first for her. I had all the proticol filling forms in giving list of tablets and Maxine the anesthetics said with all my tablets I should rattle. She took 2 goes at getting the canular in because I had something in my vein that was not safe. Well I was fitted with pipes all over the place ECG and such like. I really did not think I would go to sleep and I would be awake while they did it. I woke up to find it was all over.
The ECT is an electric needle that pulses and injects chemo Bleomycin into the skin met the Surgeon explained it does not stop me from getting more skin mets and I would be allowed 4 more treatments.I was tied to my bed because they had put a machine onto my calves it felt like a blood pressure band on both legs first one then the other.
The surgeon came to see me he said it all went very well I had not lost much blood and they had given me a large dose of morphine and painkillers and they would monitor me and because I was first in if all was well I could go home at 6.00pm. So I managed to get back to my own home.
I have not had much pain yes it is sore but manageable but I was told by the surgeon I would need to lie on my back and I found that so hard to do I didn’t sleep all night again.My heels were hurting with the pressure on them and so last night I put a pillow under my legs and it worked I slept at last now I feel rough.A big change from yesterday when I spent time in my garden planting geraniums.
I hope it has made it more clearer about ECT and I thank you all for your kindness and best wishes it is people like you that help me through it.
Janice I know what you mean about us having all this toxic chemicals injected into us maybe it will be a good thing for you to find a nice holiday in the sun as long as you wear high factor sunscreen wear a hat and stay i the shade you should be alright. Then after your nice rest the powers that be may have found you a new treatment. Take care sending you (((((((hugs))))))) xxx
Well friends again thankyou for your support and Carolyn I still cannot sunbathe topless and Windy belongs to Marie she gets very possesive with him.
Love and (((((((((hugs )))))))))) to all xxx
Hi Marirose
Good to hear the treatment’s done, not too painful and you’re back home. It’s interesting to hear what happened. Did they give you an idea of how long it will take to work? I hope you see good results soon.
Best wishes.
X
MArirose
It’s so nice to hear from you and that things went according to plan and you are back home it all sounds scary but obviously the way forward with treatments now.
Fingers crossed that it all heals and makes you more comfy.
We don’t want Maria getting jealous over windy Miller either.
Take care xx:relaxed:
Hi again
DBNO they didn’t exactly say how long it takes but I will get an appointment in the post to see the dressing nurse and I see surgeon in 1 months time.
Mo i am not sure about after care here they are rubbish I had to go and ask them for help with my ulcers and got in touch with Tissue viabily through me asking about them because our Cancer Support group Lady who is a retired nurse gave me the number and I asked the gp nurses for a referal. They did say I could self refer if I needed them again.
Love and (((hugs))) xxx
Hello my fellow skinnies and everyone else sing this thread. Great news to hear Marierose is doing well after ECT…good for me now i have a ‘mate’ in that particlar club.
On that note, i saw my onc yesterday and i told him what my ect surgeon had said about they just monitor by looking and he said that is because biopsies are no good because the cancer will still be there…it may have killed some off in areas but cannot get rid of it: i knew all along is is a palliative treatment but still ‘hit home’ when he said that. He also said it can take a long time to take effect and it can last a long time too…again it is just a matter of monitoring it. My stomach and back now look as though i have had loads of henna circles tattoed on but my reconstructed boobs are still a mess, raw, scabby and leaky…sorry for the gory details.
He told me not to worry about tumour markers and said i was doing as well as could be expected. On the contdown to my scan 0n 4th July now…absolutely dreading it, especially as i already know i have visceral mets. I have been told I am worried that i have few/no treatment options left and nothing is ion place for when/if carbo stops working (or i reach the max number of cycles) have again been told to cross each bridge as it comes, which drives a control freak like me mad!! Anyway, 4th cycle of chemo on friday and then a weekend of chaos helping my daughter move into her first real home.
Love to all.xx
Hi Skinny friends
I am still here doing well not feeling sore but have had a small leak around tumour area just a drop nothing to worry about. Really felt down last Thursday I don’t really know why My eyes where puffy and I had red blotches around my eyes and neck I didn’t look like me I don’t know quite what caused it. Maybe having chemo into the skin while also having it into the body I will mention it to the surgeon on Wednesday. I did not expect to get a appointment one week later.(see cape thread) I now feel more my old self again now although I am back in a vest to hold dressing in place no bras for a while it reminds me of Bumpkin with her advices (bless her miss her)
Stresshead I do hope your weekend went well with the house moving for your daughter I remember doing it with one of my sons we moved all his bedroom furniture and other bits he had collected while at uni only trouble it was a move to France we borrowed a large transit van. Makes me wonder if that is what gave my Hubby a heart attack a month later because he had alot of driving to do as he was the only one insured to drive the van.
Love to all and (((((((hugs))))))) xxx
Hi Mo and other skinny friends
I had quite a day yesterday up at 5 and in Hull 8.20. I saw the nurse who examined the mets and agreed I needed no dressings I was managing very well but should the mets break out I could ring to see her. I told her how I had had 2 ulcers and how I managed to heal them with help from tissue viabilty advice. She said carry on doing what you are doing.The met that was starting to drip has now stopped and I have not seen any marks on my vest.
The onc was excited to see me she wanted to look at the mets along with Jenny the BN. She told me the surgeon had e-mailed her after the operation and said it all went well. She asked me how did I feel about it and had they told me the mets will turn black. I know there will be some discolouration and the black is only dried blood making scabs.
I was very interested when Jenny the BN said she was wanting to become a SBN and was going to meetings to learn more and she gave me a resource pack to read and pass on my views. So at last hopefully we will have a specialised secondary breast nurse although she is concerned about the managment agreeing with things.
Well thats my news up to date
Love to you all and loads of ((((hugs)))) xxx
Marierose,
glad to hear you are making a speedy recovery…i seemed to take ages to get back on my fet but then i was hit with pleural effusions son after ect,
As i said before, mt back and stomach are just a mass of brown circles…i have never had any ulceration there although it was all very sore and painful at first. it is red underneath bt dont know if this is the cancer, scar tissue or what. There doesnt ap perhaps thats a good sign?? Only really my right breast, where all the trouble started is not healing, althogh district nurses aqll think its better. when they remove scabs and it bleds it is very very sore and the whole area is very red, again dont know the cause…my medical team never seem ken to look at it.
Please keep in touch with your progress.
Love to all on the skinny thread.x
Hiya …moderators there is a posting here today from Sonalee. …
Not sure if this is suitable as its advertising something .
Can u investigate ?
Hi stresshead and all Skinny friends
Everything seems to be going ok. I look at the skin mets and think what a mess 2 are black (more likely because they are healing) the rest have swollen or rather flat but a larger red circle. They are giving me no trouble the soreness I felt at the beginning has never returned thangfully. The redness in my skin was was the two chemos reacting together so the onc said.
I do have Hyperbaric Oxygen therapy and the first Friday after my operation I felt okay to have this. I did have the sore pain when I entered the chamber but as the pressure increased the pain went and I have never had it since. I don’t know if it was wishful thinking that the therapy worked but it seemed coincidental.
I did have two mets on my good breast that seemed to have swollen and tender when i touched them it worried me but now they seem to have settled down thank goodness.
Well I will be going to France for nearly 3 weeks on the 21st the surgeon said it was ok depending on the dressings I would need. Well everything seems to be going in the right direction (touch wood) so I get to see my grandchildren. The appointment for the surgeon has come and it will be the 24th August.
Love and ((((hugs)))) xxx
Hi to my ‘skinny’ friends…no posts on here for a while…in hope everyone ias as ok as can be.
Marierose…great to hear you are coping and recovering well. I was amazed to hear you are going abroad. everyone seems to be having holidays regardless of this stupid sbc. I have shied away because i dont think i would get insurance having had a pulmonary embolism and pleural effusions as well as sbc and couldnt see the point anyway as i would be unable to swim and would have to keep covered as my dresing are so obvious. Also the heatseems to make the skin mets more uncomfortable.
Advice from anyone…would it be woth asking about travel nsurance first and then booking if they will cover me or just going somewhere and hope nothing happens.
I know we can go in this country but cant seem to find any enthusiasm to book somewhere.
The other thing is i have so many appointments/ dressing changes we dont seem to have a stretch of time to go anywhere.
Talking of appointments, i have just heard that the Dr in london i have been trying to see ince December has now offered me an appointment. This has finally happened after i wrote a personal letter and copied PALS in.
Lesson for today…never give up…keep plugging away to get referrals, treatment etc.
I know he pobably cant do anything for me but at least i will have heard it from the man himself.
All i have to do nowis get through Wednesday when i see my Onc and get scan results, which, as we all do,
i am dreading.
Please all post and let everyone know how you’re doing.
Much love to all.
xx
Hi Skinny friends
Sorrry I haven’t been on for a while but I have not felt too good awhile think it is because I have had too much chemo to the skin. The cape overflows into the skin causing sore hands and feet and I think with the added skin chemo i have had could have made me feel rough. The skin mets have been ok no ulcers thankfully and no need for any dressings so keeping fingers crossed it continues.
Stresshead it is lovely to see you posting more and joining in with other posts with your good advice. Well done you seem so much better I hope that breathing is getting better and I am praying your scan will be good news.
Love and (((hugs))) to you all xxx
Hi skinnies…just wanted to let you know that yesterday went well. There is no evidence of new disease and the onc says my skin is how he would expect it to be with so much treatment which has cased scarring and fibrosis (hence the shrinkage Marierose). I am to continue with last two cycles of chemo and see how we go…glad of the 2 month reprieve bt sick of crosing bridges when we get to them. As i said to him, if my chemo stops the only way they will know to do anything else is when it gets worse and by then its too late. He just said we’ll make a plan. Oh well…just got to try and enjoy the two months.
MarieRose, so glad to hear you have no dressings. I have had them now for nearly a year and don’t think i’ll ever get free of them.
RRH…thanks for your good wishes.
Nicky…thanks for the holiday advice. As much as we like city breaks or hoidaying in England its not much of a rest for my hubby who does the driving. He especially likes to go abroad and just lie on a beach, the hotter the better. I sppose anything is better than nothing though: i just dont seem to have any stretch of time without one appointment or another. lets just hope we get summer here soon.
Much love to all.xx
Hi all - hope you don’t mind me posting here. I’ve been on this forum a while - because my mum was diagnosed with BC in 2014. She had chemo, surgery, SNLB (apparently they do it post chemo now at our hospital) and radiotherapy. Early this year a swollen lymph node (that she had been told wasn’t anything to worry about but was actually the original infected node) was discovered. It had not been removed in error. Anyway a node clearance followed but not more treatment was given as not felt necessary.
Three weeks ago she went for a routine check and mentioned a lump on her rib cage, opposite side to original cancer. Consultant wasn’t worried - said it was sebaceous cyst but would take it out to stop any future worries. Two weeks later, before it was removed one more appeared in axilla and a swollen lymph node - again opposite side. My mum went back to see him - the lymph node had a US and showed nothing so he brought op forward (to today) to remove both lumps). However in past week about 8 more have popped up - breast, arms and lower back - pretty widespread. She told him today and now we’re seriously suspecting cutaneous mets. They’re so fast growing and like nodules/cysts under the skin. The two removed went sent to histology as urgent. Obviously we’re both devastated. I’m hoping to get her to come on the forum if she feels it will help her.
Daisy, you have done the right thing pressing for answers and coming on here. I was told my first skin met was a sebaceous cyst and was left untreated for 6 months. There are lots of treatments but it is very difficult to monitor and does seem to spread rapidly. Have a look back on this thread and you will keep up loads of info. Anything you want to know, just ask and we will all try and help. Keep posting and let us know how things go.
Best wishes x
Thanks stresshead. Biopsies were taken yesterday and mum just had a call for an appt next Wednesday to see the consultant.
Do most of you have localised skin mets? My mums lumps are more widespread, which I know can happen, but worries me more.
Thanks Mo - I’ve been reading through the posts - noticed you have a young grandchild - my son is 3.5yrs. Makes me feel sad but I’m trying to stay positive for my mum.
I have been to all her appts - it’s quite a long journey she had - they originally removed the wrong lymph nodes - said they were clear (after chemo) and dismissed her saying it was enlarged. Now I wonder if that is the cause of the spread rather than the original tumour. The fact it was left months or when it was removed.
Anyway I know her tumour was only 3/8 oestrogen pos. She was on anastrozole and then changed to tamoxifen as clearly anastrozole didn’t work for her. Seems the tamoxifen may not be either although she’s only been on this since after the first lump appeared. Was just the day they switched her - nothing to do with lump. Therefore hormone blocking treatment may not work for her. Also it was grade 3 so naturally I’m more worried. Thanks for replying xx