Piggsy lovely to hear from you and so glad you are staying with us for a wee bit longer!
Im ok ish still having rads. They finish on Weds. Am quite itchy so got a steroid cream. Still on herceptin got a muga scan this week to check the ticker is ok.
to be honest Im trying to keep very busy now that treatment is coming to an end as I cant acknowledge what has happened and want to bury my head in the sand!! Im sure you can all relate to this.
Had a lovely wekeknd with my boys who I took to sunny old Southport Pontins ha ha I was exhausted last night!
Hope everyone else doing well.
Kat good to hear from you like you I think about Tamsin often and wish she would just let us know she is ok.
Wonder how the others are: Lynda, Julie, BOF. hope not missed anyone off
Hi ALL
I have been feeling guilty about not posting. I keep checking and I wanted to do I long reply but I need to take notes to do that so pen and paper to hand. I have decided it is better to just make a post.
Bumblebee I am sure you look beautiful and that everything will come back really quickly once you get back into the swing of work, having said that I am pleased I am retired. The bread making is going well and I now have reserves in the freezer.
Mahsa I too hope you are settled in your new house.
I am doing ok. I still have to have my review in April but I have no breasts left so should not have to face that this year. The Letrozole is giving me hot flushes, night fidgets, and poor sleep. I have also felt fatigued and re reading the side effects this can also be placed at is door. I am hoping that the effects will reduce as time goes by and my body adjusts to a reduced oestrogen level.
Last week I meet 2 school friends at Nottingham Center Parcs causing havoc on the slides. We are talking three 64 year old ladies. It was great fun and the serious job of starting to organise a school reunion in 2015 is well on its way.
Yesterday we went to Leeds to see my 2012 recon surgeon. He has said he will have to go in via the old scar to remove my tummy seroma. This would be another major operation with 6 weeks initial recovery and a year to full health. He would also reduce my recon breast so I could get a smaller protheses. Both are elective any comments from JJs would be welcome. Some say leave well alone. I am being pulled both ways.
We are hoping to go to the Yorkshire Dales in the caravan next week. I don’t think OH has seen the snow forecast yet!!!
Anyway greeting to all the silent JJs I too hope you are all well and getting back to normal life. With my very short hair I am the trendest I have ever been. People keep asking if I am going to stay this short.
To KAT and BUMBLE and those still posting. Thank you for still being here. I personally continuue to feel supported by the group.
Kat I do hope work improves as the fazed return continues. I hope the tiredness reduces soon.
Bumblebee if you have bits of dissolvable stitch sticking out you can just pull them out. I don’t think they dissolve if they are not covered by skin.
Greetings to all Happy Happy days
Nette x
Hello my lovely JJ’s. I know I havnt been on here for awhile, ive been struggling to find work and have had to put myself on sick as its proving impossible to find a full time job whilst still having treatment, its so frustrating as i want and need to work, but until my treatment is over which isnt until june i feel i have no choice. I hope you are all recovering well, the majority of us JJ’s are hopefully on the mend and over the worst. I have my 8th herceptin tomorrow, only 10 to go!!!
I hope you are all feeling ok physically as well as emotionally and I will be back real soon!!
Hi Julie and Annette, great to hear from you Julie. I often think about you. Sorry you are having so much trouble with work I understand it must be mega difficult and I know you are an amazing person BUT my doctors keep telling me that it will be 2 years before I am clear of the after effects of the treatment we have had and you are still on heceptin. I know it is difficult but I think you need to be kind to your self. To be honest I can’t accept that it will take that long. Except that a fairly simple cold knock me sideways for 2 whole weeks. What I am doing is trying to go back to basics with cooking and excersis. Mainly home cooking fresh food and walking every where possible. It is saving us money as well.
Annette, do you have a breast nurse, I seem to remember having that conversation one day in the lounge and you and Julie not really having had much contact. I would definitly go to my breast nurse to see if she could chase up the results or go via my GP. It is worth a try the BN is there to help reduce stress and support you. 4 weeks waiting seems daft. Has you arm healed ok?
Because of my cold I was feeling too lethargic to prep the caravan, plus, we are having our pavements renewed and our narrow road is just about single lane at the moment and so we were afraid we would not be able to get the van in or out, plus, the forecast in the Dales was not to promising so we are still at home. Just as well as Chris now has the cold. We have so far had a lovely week here so maybe it was for the best.
I hope all the other JJ are doing well and if you are reading this that you can send a greeting. It is, I expect, a good sign when the site is quiet but it is nice to have confirmation that all is well.
I suppose the ones who are left are those who are still going through procedures so continue to want support.
I am waiting to speak to my GP and local breast surgeon for second opinions on what to do about my pedicle tram recon seroma, and recon reduction.
I wonder how others have done with their recons.
Nette x
I know I haven’t been in touch lately, but you are not far from my thoughts. The horrible chemo journey wouldn’t be easy without all your supports. Good to see some activity on this thread, and happy to read everyone getting on with their lives as best as they can. Is not as easy as it sounds!
I finished 6 weeks of rads 3 weeks ago, didn’t have much of a problem with my skin. I tell you, cabbage leaves worked wonder. :smileyhappy: Shoulder movement getting better too, I am still having physio. I found it quite strange to walk out of hospital on the last day of treatment, would have liked someone from the team to meet me at least. After 8 months of coming and going, no one even acknowledged is your last day. Later on I told one of the BCNs how I felt, and she responded; “you will get a letter in couple weeks confirming end of your treatments.” Well, I am still waiting for a letter! I must say, BCNs at my hospital have been quite useless, waste of space and budget. I am now on Tamoxifen, is too early to see if I get side effects. I am not sure if I will carry on with it. I have lots of questions about it which I will ask when I am back to the clinic early May. I am also having lung scan end of April to find out if the nodule which has been there from the beginning still there. We know it didn’t responded to chemo, but is not enlarged either.
Still not found anywhere to move to, housing market in London is quite a joke. I would have rather spent the time I have now and before returning to work to unwind and relax, but have to deal with this instead. I tried to get extension, but they just want to get rid of the property. So will be out of here end of April, and hopefully to a new place, rather than to storage and somewhere temporary. I have been doing regular meditations and healing for the past 6 weeks, which I have found quite helpful. I feel calm, and find it easier to let go of anger and negative feelings. Hope something could have been done with the neuropathy too, my feet are killing me. After a routine blood test I found out I have quite a serious vitamin D deficiency. I don’t know if this has been the case before cancer or caused by treatments. I am now on medication to bring it up to normal level, and try to walk in the sun when is shining. Is quite scary fact, particularly with the link between vitamin D and breast cancer. Anyway, I am sure everything will be fine in time!
Please let’s arrange to meet up in May, I do really want to see you all and happy to travel and meet in the middle. Thank you all for thinking about me, I will try not to stay away for too long.
Hi Annette, glad to hear the lump wasn’t anything serious and scan was clear too! As far as I know vitamin D is not included in full blood count, but better check with your GP. Since you don’t do hugs, I shake your hand and blow you a kiss… :smileyhappy:
Hi Annette, I saw a very interesting article about Vit D in telegraph about 3 or 4 weeks ago. I have a link downstairs but it is very much worth a read. Vit D appears to be a VERY important Vit so you need to get your dose sorted. Managed to put link at bottom. The sun this weak is as strong as the end of August, you don’t think that so get out the sun screen, I am going to coat my lymphadema at risk arm from now, sun burn is not an option.
BB welcome back we have missed you. Pleased you are feeling well. I an retired but so understand your problem. It may help to know I had similar feelings when I took extended leave to visit Oz and that was only 6 weeks. I soon got back into the swing so hopefully you will feel much better after you have been back a week or two. I am sure you will feel much better when you have had your first annual check and like Annette are on the maintenance programme.
Piggys, is your swollen arm lymphadema, if it is you need specialist massage and support. I don’t think it will just go so the sooner the better. So if not already done try to get into the lymphadema clinic. For Your GA enjoy your festival. If you drink take Vit C and on the days up to op drink water to saturation point. I try to drink 3 jugs in the lead up to the nil by mouth point. So that is 3 jugs between. 6 - 12 midnight. They are not so strick on water these days so keep drinking as long as you can. You will not be peeing all the time if you increase your water over a week or two and you cut out the tea / coffee. I drink water and tea by the gallon all day but only pee after tea.
I don’t get to see the breast clinic until 29th April. Last year at my first annual from left bc I was dianosed with right bc so as I am now a double mx I should be ok this year.
Mahsa, send postive house hunting vibes to you and lots of hugs. Let us know when you are sorted.
Kat how arecyou doing?
Love to all missingJJs as we all go into our annual checks. To thoses still posting Hugs, I am claiming special privileges Annette.
Nette x Www.HealthReaserchforum.org.UK Oliver Gillie
Vitamin D and cancer plus others. Www.Telegraph.Co.UK/health
Back last year as joined you as Deb S but login kept playing up and I lost the will to live trying to get in here some days lol.
Have just finished my rads after a very long journey which included multiple lumps, chemo, surgery, more surgery to fix a bleed, more surgery 6 weeks later to fix local recurrence, constipation, piles, **bleep** fissure, palmar plantar syndrome, 6 stone weight loss, suspected new lumps in liver and bowel, multiple ct scans and MRIs and finally 15 rads
My surgeon was wonderful, my BC nurse is an absolute star and my oncologist is a lovely woman. I can’t fault the treatment I have received with the NHS.
I worked through most of it, only taking a few weeks off after the operation. I found this very helpful to keep some normality in my life and kept as positive as I could.
I plan to take a while to read back over the thread and have a catch up with you all.
Debbie xx
Hi Piggys, Mahsa, Debbie (welcome Back), Julie, Bumblebee,
Funny thing about get 2 diagnosis of primary BC 2 years running was that I just got on with it. I think I would struggle if I thought to much about it. I went 133 days in 2012 from diagnosis to surgery and went to see the lead Dr yesterday to NOT COMPLAIN but to make sure the delay and failings had been noted and they are trying to solve and improve processes. He was very nice, I think he expected complaints, and listened to all I had to say. He admitted that I had been let down badly. My BN who had been very good in 2012 but less so in 2013 tried to avoid me so I ended up tracking her down. I think she thought I was complaining so I tried to put her mind at rest. There is no point in playing the blame game.
I get my next annual check up at the end of the month. Yesterday the BN said they just have a feel round the chest wall. No boobs so no scan.
I am not sleeping well as I am worried about when I will have the operation to remove the tummy seroma from my 2012 recon. I want the op in Oct but not sure when I will be called it is very distressing. I can’t move on till it has been sorted.
I still have tingling in my hands and feet when I have had them in water for a long time. Not sure why they react more after being in water.
I saw one of the chemo nurses yesterday and showed her my arm with the cording. She said it was a bad case but no sign of shortening of the arm. I had never thought about that but when it is tight I get OH to pull it so maybe I am lucky I seem to have had good instincts.
Well that is my ramble for today.
Happy Healthy and peaceful Easter. We are all coming to our annual checks so all the very best to you all. Remember that I was 1 in a large statistic of healthy checks.
Nette xx
Hi All
Rang ps secretary and got a provisional date for operation to remove seroma left over from left recon in 2012. Bit scary as they insist on telling you all the risks. Any internals infection would be life threatening!!! But can I live with a tummy bulge that makes me look 5 month preggie for the rest of my life??? Well I have till 21st July to decide.
Hope you are all having a lovely sunny Easter.
Nette
Hi All
We are quiet at the moment. I hope everyone who were going back to work in April have now made the transitions successfully aand all is going well.
I had my second annual check up and as I now have no natural boobs I just had a hands on check by my very nice surgeon. He check round the breast areas and round the nodes in my neck. Thank goodness this year everything was fine so I can look forward to no more visits to Scarborough’s breast unit until next year.
As I posted earlier I am planning to go back to the LGI to get my 2012 seroma removed in mid July just as the schools break up so hopefully I will have daughters to hand to support OH. I am also hoping the ps will be able to reduce the recon breast to an acceptable c or b form. It will make the prothesis lighter.
Ok, is anyone planning to do their local ‘race for life’ I am thinking of power walking it. I am just not a jogger. As this is the week before LGI I am hoping I will feel inspired.
Greetings to everyone that checks in
Nette x
Hello lovely JJs, hope everyone doing well and getting on with your life as best as you can!
I am OK. There is no changes in the lung nodule, will have a re scan next year. Didn’t found a place to live in time either, so staying with my brother for the time being. I have been so tired both physically and emotionally that I haven’t even tried to find my own place since moving in with him! Also started phase return back to work 2 weeks ago and trying to get my head around it. Work is not a priority anymore but try telling that to my perfectionist side!! I started Art therapy last week, not sure how is going to help my mental state but it would be interesting if it does.
I kind of avoid coming here as often, I guess is part of trying to move on. However, you are always on my mind. What we went through with chemo was horrible, I used to read through our posts to find some comfort and reading every other post in the forum to find answers. Still find it hard to believe last year was really real…
Please do get in touch if you passing through London, would be nice to see you.
Isn’t it great that life does move on. I have bad cording from the chemo in my arm which hurts right into my knuckles but I keep stretching them out by making a fist and hope that eventually the discomft and pain will cgo.
Life has been busy. Two weeks ago OH and I did a two day cycle ride 46 miles up hill and down dale but we did it. It was in preparation for our cycle tour of Holland. We plan to cycle 200 miles. We will do it over 8 days making a modest 25 mile a day ride. We are doing it in 2 stages 4 days, 2 days break then the final 4 days. We go in 2 weeks. Main problem is trying to find a way of packing the kitchen sink into 2 panniers let alone 10 pants and bras shirts and trousers. I am NOT build for lycra!!!
Last Wednesday we went to a garden party at Buckingham Palace. My husband recieved an honour in the New Year list 2013 but we had to cancel our visit last year. They said the party invite was not transferable but we got another invite for this year. The rain held off and we travelled 1st class down. Although I have been before it was a lovely experience.
After we get back from Holland I will go back to Leeds (LGI) for the seroma, left from my recon, to be removed and to have the recon reduced. I am very nervous about it all and will see the surgeon next week to try to get more information and some reassurances. That will be in mid July, after our youngster’s 40th birthday celebrations.
It will be year 3 of treatment and operations but hopefully the last. It will be 6 weeks immediate post op then a full year recovery. Hopefully by this time next year it will all seem like a distant dream. Fingers x.
I hope all you other JJ’s are doing well thoughs who are having to return to work are not finding it to difficult, I know my sister eventually took early retirement, Mahsa I hope you manage to sort you home out soon and that the art therapy class are fun and help.
Julie and Annette, my special buddies from Castle Hill, I hope all is well with you. I am still baking!!!
Finally I expect like me others bob in now and then to check on posts so here is a bit of news.
I don’t expect to need a hair cut for at least another 6 months and it is growing back white with a bit more dark than originally but the lady garden is rampent and black and straight of all things. Weird or what.
I am still not sleeping well and now suffering from heartburn caused by the seroma hence this ramberling late night post.
Love and greeting to you all and may done of us get any more problems but live to be matriarch within all our families.
Here’s to a great summer.
Nette x
Hi Boxofrogs, I had a cyst removed from under my breast, in the days when I had boobs, and the scar opened just like you described. It was a gapping hole. In my case they couldn’t restich but it healed beautifully. The scar was a little wider than it possible could have been but you really don’t need to worry.
I expect the hole is not so big to those that know.
Well done in getting over the first year check and congratulations on going flat.
Have a wonderful holiday. To help healing you could try a Vit C suppliment, and eat lots of coloured foods, peppers, tomato, carrot, spinach, watercress. If you are not keen on salad, they will all go into a soup if you lightly cook and blitz.
All the best Nette
Hi all, thought it was about time I did an update too!,
Well on my 7th week back at work, full time again! Still finding it a bit tiring but that doesnt help me sleep still…annoying - I would love to get a good night sleep…sigh! Still on my steroids for the dermatomyositis and just started methotrexate which is a mild chemotherapy drug also…have to have blood test every 2 weeks as it can damage liver. My poor old veins were just recovering lol!
Even though its been 6 months since radio ended my boob is still a bit pink, swollen and bigger than the other one…but as all was ok at annual check up im not bothered. My hair is growing bushier by the day and totally grey…I hate it! Hubby said it looks like candyfloss as its fluffy and bushy…just sems to be growing out but not lenghtways. Anyway I posted a feeling sorry for myself status on facebook and a hairdresser friend is coming to sort me out next thursday free of charge…put a bit of blonde back in and try and shape it a bit…bless! I just dont like looking at my photo, grey haired old lady with a fat steroid face is shat I see haha though in my more sensible moments I know I should just be grateful to be here.
It does feel as though last year passed in a blur, what did I do every day at home? But hubby is now off work with his back again now that im back at work…role reversal time! Feels a bit odd not having hosp appointments etc, as no more cancer treatment…but not complaining.
Nette- wow you are good re the cycling, cant believe what you are planning in holland…go you well done. Do hope your next surgery is the end of it all and is successful.
Just popping in for a catch up in my lunchbreak Looks like you have all been busy!
Im still loosing weight due to the issues the constipation caused. Waiting to see my colorectal surgeon to find out where we go from here. Currently 6st 7lbs. Good news is all scans were negative. The lumps in liver were cysts that they are not worried about and bowel showed nothing of significance - Yippee nice to have good news
Just looking at how tired some of you seem after the return to work. I’m glad I kept working through treatment as I knew it would be hard to go back after an extended time off, plus it helped me mentally to maintain the normality that work brings.
Now that I have been handed my life back I plan to make the most of it and have been doing lots of things that I never tried before. I’m singing in a choir, jumped on a plane to Alicante even though I hate flying, drove a left hand drive hire car across Spain, randomly drove up that lane that I always drive past and never knew where it lead to etc
Hope that the hair appointment goes well Bumblebee, we do feel better when our hair looks good don’t we
Well back to work for now, will catch you all a bit later. Take care ladies and give life hell xx
Hi All
Bumblebee I hope the hairdressing was a great success. I decided to accept white hair at the end of 2012 and my first encounter with BC. Somehow white was ok but I am now growing pepper and salt and I am really not keen. I currently have reasonable cover at back and sides but top is still very short and spikey. I tend not to look in mirrors. Is it really 6 months since rads finished. I am temped to say only as it seems a long time ago.
I think I have been lucky in my recovery and next week we are going to Holland for 17 days 10 days we will be on a cycle tour. 4 days travelling west to east in a southern curve and after 2 days rest we cycle for another 4 days going back to the west coast but taking a northern curve round Amsterdam. We are staying in peoples home with a group called friends of cyclists who offer b&b in their spare rms.
When we get home I have signed up for local 5km race for life. I am not built for running so plan to walk with my 6 yrs old g’daughter and slightly older daughter, just hit the big 40. Is anyone else planning to run in pink.
Then after my visit last week to the Leeds hosp and my 2012 ps I hope to have my rather large tummy seroma removed and my recon breast reduced. The ps was his normal gloomy self and I could have walked out after the first 5 mins of hearing about how nothing might work then I asked him what the real risks were and he said 1-2%, I could of course be the 1% but we have to take some risks.
I should get a op date on Monday if I ring the ps sec. He also reduced my expected hosp stay from 4 to 2 days which is better.
Boxofrogs how are you doing. Have you healed up? When is the holiday. Go girl. Nothing should stop us now.
Sakura sorry to hear about your bowel problems. Bonus is that your scans are clear. Your weight does sound low but hopefully you will be sorted soon. I am still trying to reduce my weight. Hopefully the bike ride will help.
We will only do about 25 miles a day so not a vast amount over 8 hrs so hopefully plenty of time for sight seeing and not too much time drinking tea and eating cake.
Bumblebee I hope Ian is now back on his feet. Back pain is horrid. Pass on our best wishes.
Julie if you are still checking in I often think of you. Chris asked if I had heard from u only yesterday. Hope things have settled down for you and the work situation has improved. Please remember us to you mum as well. 6 month ago. Amazing.
My next check will hopefully be from an Internet café in Holland. Please all pray for good weather not too hot and no rain.
Love and greeting to all
Nette.
I might be joining the July Chemo group instead of June’s as saw my oncologist today. He said chemo (TC and Herception) should start in 3 weeks if I don’t have the cold cap and 4 weeks if I do. I am opting for the cold cap, so I suppose my date will come through as early July.
Good luck to everyone during their treatments. Hope it goes as smoothly as possible x x
Hi Sugar8 you need to find the July 2014 thread the July junkies all had there chemo in 2013.
If no one has started you can start and choose a tag. You may like to read some of our posts. We still have a few problems but most of us have come through with flying colours.
I am currently in Holland about to start a cycle tour. My hair is growing and I have a definit chic look that I have never had before.
Wishing all the very best on your journey. This forum helped to get me through chemo and 3 of us meet up at radiotherapy. That was the joy of all having treatment at the same pace.
Good luck with your year.
Nette.W
My haircut looks good, quite pixie like, cut round my ears etc. Think I will need to have it cut every 3/4 weeks to keep it tidy as it soon gets fluffy. Its v thick too. Had a hint of blond to brighten the gray but cant really tell.
Went away at weekend to lowestoft for ians army reunion…was too blooming hot and ive got a heat rash even tho I wore hat and factor 50 sunscreen. Im photo sensitive due to the dermatomyositis and the methotrexare drug. Roll on winter is all I can say haha.
Unfortunately I may be getting a bit of lymphodema…arm has some swelling round elbow. Rang lymph nurses at the Queens centre, very nice, long wait for appointment as only 2 nurses and 400 patients but can ring them if it gets worse. I do hope it doesnt, couldnt bear the thought of compression sleeve…dont know why its happened, tho I did over do itvgardening and got a few scratches…naughty of me I know. Sigh.
Just when we think we are moving along something jumps up and bites us in the bum doesnt it…ah well, got to keep the nhs busy I suppose!
Now full time back at work…its getting easier now im into the swing of things, ians still off with his back tho but at least he is doing some housework .
My coisinnin law has just finished her chemo using cold cap and has kept her hair. I didnt really know about it before my chemo or that they offered it at castle hill, but not sure I would fancy it really.
Anyway, enjoy holland …at least its flat …and dont overdo it. Take care, hi to Chris from us both.
