Well, I should have gone back to work today, but I haven’t been able to because of an administrative c**k up. I had been told by my manager that I could return on 1 March subject to getting confirmation in writing from a doctor that I was well enough. I got a ‘fit’ note from my GP last week and rang him to confirm I’d got it, only to be told that it has to be agreed with an Occupational Health doctor! I have now got an appointment to see one tomorrow morning, which was the earliest I could get. I’m really annoyed about this because I emailed my manager weeks ago suggesting a return date of 21 February, and asked him to confirm the requirements, and heard nothing for ages. I had to chase it last week, when it was agreed I could return today. I don’t know when I will be returning to work now, except that it can’t be next week because I’m on holiday!
Oh Dawn that’s so frustrating when you gear yourself up for stating back with your new/old life and a first hurdle is immediately thrown in front of you. As if all the massive hurdles you’ve already leapt across weren’t enough! I hope they’ve sorted it out for you today. Have a great holiday. Xx
See see - congratulations on completing the radiotherapy treatment! I finished mine on 22nd Feb and the side effects, red sensitive skin and sharp stabs have become worse this last week but are not a problem as I was advised this would be the case for another couple of weeks anyway. Then I hope to be able to wear a bra again and not these flimsy sports tops.
It’s been one hell of a nine months for all of us and I can only imagine what others have been dealing with along with cancer. Personally I found the other events in my life sometimes more difficult to deal with, a daughter with new baby and broken heart as her husband decided he didn’t love her any more and my own husband already dealing with early onset of Parkinson’s diagnosed with deteriorating lower spine. It was always difficult to tell him I was feeling bad as he always has pain so I told close friends instead. I went to all my treatments on my own as I preferred it that way and I’m stubbornly independent! Now we’re about to move house and leave London - a nice distraction to have the house on the market during chemo! And I’m looking forward to the new project. Best of luck to everyone going forward - we will all have to live faster and enjoy what we have. Xx
RosieRo - thank you. Congratulations to you and See See on the completion of your radiotherapy, and sorry for rant yesterday!
You must be so relieved the active treatment is now over, even though you are still suffering the side effects of the chemotherapy and radiotherapy, and still have other treatment ongoing. I hope the side effects will soon improve and that within a few weeks you will start to feel more normal again.
It really has been a journey for both of you, particularly for you Rosie, with your husband and daughter’s problems. You both deserve a rest and lots of TLC (predictive text strikes again - I just mistyped ‘rest’ and it put in ‘rat,’ lol. You certainly don’t deserve that!). BC diagnosis and treatment has been such a dominant thing in my life these last 8 months, I sometimes forget that life goes on around me and other people have problems of their own. I hope you have plenty of support from other family and friends as well as from all the ladies on here. See See - I wish you well with your return to work in April - unfortunately my announcement of return to work was premature! You hair and nails will probably grow back quicker than you think, once the drugs have worked their way out of your system.
I know I hould be grateful that I have had a relatively easy time since the chemotherapy finished, and that apart from my skin problems I have recovered well. I expect the radiotherapy will soon put a stop to that though! The OH doctor I saw this morning certainly thought so, and wouldn’t sign me off as fit to go back to work until the radiotherapy is finished. However, she did agree that I would be fit to go back in a week’s time (phased return) if the radiotherapy doesn’t go ahead for any reason. The OH report she has sent to my manager covers both scenarios.
Thank you all for your kind comments- I feel very lucky to have supportive friends and this forum has been great for sharing and hearing others experiences.
Lisad - I’ve seen Beautiful twice! Took my daughter recently and she loved it too. Wasn’t bored for a second and the music is fabulous. Hope you enjoy it. I’d be up for meeting in September with whoever can make it. Thanks for offering to organise. X
Hello all, I hope you’re all doing well. I’m having a fed up day today as I had another bout of sickness this morning. I’ve had them on and off since chemo ended, much to my annoyance!
Does anybody know how long such SEs last? I can cope with the fatigue and taking it easy but this vomiting is beating me and me no likey!
Hello again everyone!
We got back from our holiday on Saturday. The weather was a lot better than the forecast suggested it would be. My wig only came off a couple of times, the first time when I was wearing a wide brimmed hat which blew off in the wind and took the wig off with it, and the second time at Stonehenge when my woolly hat got caught on a twig sticking out of the doorway of one of the reconstructed Neolithic houses, also taking my wig off with it! I had to dash back inside where some very kind ladies helped me put the wig back on straight. But at least I was able to get back into the habit of walking. We didn’t do very long walks, only one or two miles at most (e.g. around Stourhead landscape gardens, and along the Kennet and Avon Canal from Bradford-on-Avon to Avoncliffe Viaduct and back), but it’s a start. It is back to the treatment treadmill now, though. I had my first radiotherapy treatment yesterday morning (at last!), plus Herceptin 7/18 in the afternoon.
Aine - thanks for the advice. Having thought about it, I now realise that you and the OH doctor are right about not being ready to go back to work yet. 23 radiotherapies will be a lot to cope with. I didn’t start to worry about the effects of the radiotherapy until just before I had the OH interview. After looking into the SEs, I was seriously considering not going ahead with it so I asked for the OH report to cover that scenario. I only confirmed I would have the radiotherapy last Friday, while on holiday. I’m still not 100% committed to having the boosters and will see how I get on with the standard 15 first. The slow hair growth must be so frustrating, but you will probably find it starts growing faster soon. I must admit there are times when I am a bit impatient with it. I will be glad when I can say goodbye to the wig, even though it would have been difficult to face the world without it. I had a similar comment about my wig not long after I started wearing it, and took it as a sign that the wig was OK!
Auntienanna - congratulations on finishing your radiotherapy - I’ve only just started mine! Sorry to hear you are still suffering with nausea and vomiting so long after your chemotherapy ended. It could be the hormone tablets rather than the chemotherapy because they can also cause sickness. I don’t think it is normal to be still getting this SE from chemotherapy so long after finishing it, so I would definitely seek further help if I were you. The zombifying anti-sickness tablet (Cyclizine) worked for me, and you only have a 3 day course of it, but you wouldn’t be able to work while you are taking it. I can’t remember whether they have tried you with Akynzeo before, but if not, it would be worth a try - you have nothing to lose by asking. They should be prepared to give you something new if nothing you have had up to now is helping. You are already having to cope with fatigue while working on busy wards and studying, so you shouldn’t have to put up with this any more. Hope you get some help with this soon.
Lisad - it’s good to see you are settlng back into some normality after your active treatment, hope you enjoy the musical and holiday. My hair is growing back fast as well, it is now about 1cm long but still a bit thin in places and there are more grey hairs than there used to be before chemotherapy, so I am not brave enough to dump the wig just yet. I also have eyebrows and eyelashes (hooray!) and hairy legs (boo!). I am just using E45 shampoo though and will let my hair grow in its own time - I don’t think it needs a lot of help anyway. I can’t advise on your shoulder problem I’m afraid. You may be right about the Letrozole causing it but it could be completely unrelated. As it has persisted for 3 weeks, it is probably best to get it checked out.
Truey - you are ahead of me with the radiotherapy, despite starting and finishing your chemotherapy after me. They were very slow organising it after the oncologist said it should start 4 weeks after the operation, which was on 19 January. If this had happened I would have nearly finished it by now instead of only just starting, and I wouldn’t have had time to worry about it and have second thoughts. At least it is now underway, and unless there are any unforeseen delays it will be finished by Easter.
Aine - maybe you’d be better off visiting Newgrange instead! You may have already been but if not, check it out: newgrange.com
it’s nearer to you, and is more impressive than Stonehenge. And it’s older!
I had trouble swallowing things during my T cycles of chemotherapy, at the same time as the other mouth problems (dry, sore mouth and tongue etc). It went away when they did (around Day 11 or 12) so I assumed they were all connected. I eventually worked out that the problem was a swollen throat. It wasn’t realy very sore, but it was swollen and constricted making it hard to swallow solids. Difflam helped a bit.
I managed to swallow tablets most of the time but the antibiotics I was on for the infection were quite big tablets, so I had to get the liquid version when it got really bad. I don’t know whether that is an option for you. The main problem I had was swallowing solid food, so I had to eat mostly soft foods (e.g. porridge, soggy Weetabix, pureed soup, shepherd’s pie and fish pie).
I haven’t had anything similar with Herceptin only so far (had Herceptin number 7 on Monday). If it persists the best thing to do is go to the doctors and see what they suggest.
Hello ladies - where is everyone? I expect having finished your active treatment a lot of you are now back at work or doing other more interesting things, and too busy to post. Unfortunately, as you know, my radiotherapy was delayed, and didn’t start until 13 March. I had number 10 of the 15 whole breast treatments today, and will be seeing the oncologist on Wednesday to talk about ‘boosters.’ If I go ahead with them the radiotherapy won’t be finished until just before Easter.
Hi See See
I am not back at work yet eather. Can I ask , did you have to discuss with your GP first then speak to your work about a staged return? I am frightened it’s going to be too much so not in a hurry to go back. Its nearly a year since for me, i think i will have forgotten alot. But yes I am thinking about what hours would work out best.
Well done on no wig? my hair is coming in almost a centimeter at back and sides but still pretty bald at the Crown ? so I look a bit like an old man from the back.
Hey OldDawn
You are almost there x I found my 15 rads not too bad at the time but worse after I had finished them. I think it keeps working for a good month after. It was not unbearable but tender with nerve pains. It has settled down now.
Take care ladies
Vxx
Nice to hear from you both!
See See - my return to work arrangements will be similar. OH recommend a similar phased return for me, starting with only a few hours and building up gradually. Realistically I don’t think I’ll be back until May, allowing time to recover from radiotherapy, because there will have to be another OH return to work interview before I will be allowed to go back.
Vintage - I went to my GP to get a ‘fit’ note, as I’d originally been told to do, only to be told then that I also had to have an interview with an OH advisor - and then she wouldn’t sign me off as being fit to return! I guess it depends on your employer’s policy, so you need to ask your manager (and hope he or she is better informed than mine was).
Hello again, Madmac and Lisa, nice to see you are both returning to normality.
I still have a way to go because of the radiotherapy. I’m glad we managed to fit a holiday in before it started because I was beginning to get fed up and bored.
My hair is now about an inch long, but thin in places and I’ve also got more grey hairs than before like Madmac (hardly surprising really). I’m not brave enough to dump the wig just yet, but hope that by May my hair will be long enough and presentable enough to go out with ‘nothing on.’
Nice to hear from you again, keep in touch.
Thanks Aine. Glad you’re feeling better and your eyelashes have returned.
I was also feeling a lot better before l started having radiotherapy! About a week ago my energy levels started to drop, and it’s now a struggle to get up in the morning and do my exercises. I don’t know whether it is the radiotherapy itself or the travelling and waiting around when we get to the hospital that is wearing me down.
The internet is a wonderful thing - this forum wouldn’t exist without it - but like all technology it has positives and negatives. I take the view nowadays that if something sounds depressing I won’t bother to read it. I prefer to look at positive stories and articles about new research or treatments.
Hello everyone, just catching up after being out of action for a while with a bad cold.
This was the worst cold I have had in years, and was nearly as bad as T chemotherapy! It started with a sore throat and cough followed by very snotty nose. It was so bad that we ended up coming home from holiday a day early, and I also had to postpone my last Herceptin injection because of it.
I am now much better, and hoping to return to work next week (at last!). I have a re-arranged OH appointment on Thursday morning (the one I was supposed to have on 2 May was cancelled by them at the last minute - they phoned just as we were about to set off). So fingers crossed there will be no more stupid unnecessary delays over returning to work.
I was also warned my treated boob might shrink after radiotherapy, but it is now nearly 6 weeks since it finished, and I have not noticed any change, except the boob is still very slightly swollen, and my skin is back to normal. From what I read in the radiotherapy booklets, there can be delayed effects, so the shape could still change. This is why surgeons want to wait a few months before doing any more surgery, to make sure it has settled down. If I get significant shrinkage, the options will probably be lipofilling, reducing the other boob to match, or padding.
My first annual mammogram appointment has also come through. This has come round quicker than I thought, because the appointment is less than 12 months after diagnosis. Unfortunately, the appointment clashes with one of the dates of the Moving Forward course I have booked. I tried to re-arrange the mammogram today, but the only alternative they could offer was a fortnight later (which would be 12 months from diagnosis). My husband made such a fuss about not delaying the mammogram (and couldn’t understand why I was content to postpone it) that I have ended up sticking with the original appointment.
When I telephoned BCC to cancel the Moving Forward course they said I could still go ahead with it on the three days I can make. I haven’t cancelled it yet, but I am not sure I want to go ahead if I can’t go to all the sessions, so I will have a think about it over the next few days.
Has anyone else had this problem? And am I being unreasonable in thinking that it would have been perfectly acceptable to postpone the mammogram for a couple of weeks to avoid the clash with the course?
For some reason two messages got posted so I have tried to get rid of one.
I would have postponed the mammogram too but I can understand why your husband was anxious not to. I’m due mine next month and I was warned that they might want to do an ultrasound around my scar just to make sure scar tissue isn’t hiding any lumps.
Other than that I am trying not to get frustrated at the slow pace of healing. I’m still suffering excess mucus, which is really wearing and drags me down a bit, especially when I vomit every ten days or so, but I have an appointment with my GP next week and I will demand anti-mucus drugs! They give them to asthmatics so I can’t see why I can’t have them. Fortunately my GP is sensible.
I hope you recover from your cold soon Dawn and that everybody else is recovering well too. How is the hair growth coming along? Mine is long enough to be very short hair. I asked my hairdresser to trim and shape it for me and she suggested I should dye it back to its old colour the next time I go. She does the hair for a couple of other chemo ladies and one of them said it helped her to feel more herself while her hair grew to a length that she was happy with. As I don’t feel myself with very short hair I think it is a good piece of advice. I want mine to get to bob length and then I’ll decide what to do. (Pre chemo I had very long hair)
Hello again, it’s warm and sunny here too I am over the cold (no more sniffing or nose blowing!), and pretty well back to normal now. It’s been a long time since a cold affected me like that. Everyone says it’s because the chemotherapy has weakened my immunity so I can’t fight off colds as well as I did before, and they are probably right. So if you see anyone sniffing or coughing give them a wide berth!
Thanks for your replies - I thought my husband had gone a bit over the top about postponing the mammogram, but I guess some people just want it to be done asap so hopefully they can be reassured everything is OK. Anyway, it’s all water under the bridge now. I assume the mammogram will be similar to the routine screening but I’ll let you know what it’s like when I’ve had it. My appointment is at 9.20, so provided it is on time and they don’t take forever about it, and the traffic is kind to us, I might just about be able to get to the Moving Forward course which starts at 10.00.
My hair has grown quite a lot so I don’t bother wearing anything indoors now - its too hot. There is full coverage and it is quite thick, but it hasn’t been properly styled so it doesn’t look great. There are also more grey hairs than before! It is showing signs of being curly, but whether it will be as curly as it was before only time will tell. I reckon that by July it will be long enough for a trip to the hairdresser for a proper cut, and I’ll be able to dump the wig. I don’t know whether to stick with short hair or try growing it a bit longer. Don’t know how to put up photos but I will look into this.
Auntienanna - sorry to hear you are still having problems with the wound healing and excess mucus. My scar tissue seems to have largely gone. I was told to increase the frequency of the post surgery exercises to 4-5 times a day in the run up to radiotherapy, and although this was a pain, it was worth it, because I had no problems with positioning on the radiotherapy machine, and it seems to have helped with the healing as well. Massaging with aqueous cream during and after radiotherapy has also helped reduce the appearance of the scar. The middle tattoo still looks like a big blackhead though! I am still doing the exercises 3 times a day and will continue until I have my final appointment with the specialist at the hospital where I had the radiotherapy on 6 June. I’ve never had a problem with excess mucus except when I’ve had a cold (although the Herceptin does make my nose drip from time to time!), so I don’t know what drugs are available to stop this, but I hope your GP can help.
Aine - glad you are feeling more normal now and are coming to terms with the hair issue. It’s funny what you said about putting the horrors of chemo behind us. I thought I had until I got the cold. The first few days of it I had a sore throat and a cough, and it would gradually get worse as the day wore on. It was so horrible at one point that it brought back unhappy memories of T chemotherapy!
It is good to feel a bit more normal again and to be able to get out in the garden in the sunshine after being stuck indoors with a cold. The garden is looking nice now the roses are starting to come out. Hope you are all managing to get out and enjoy the sunshine.
I had my rearranged OH appointment this morning and have FINALLY been declared fit to go back to work next week!
Hi Ladies
Just checking in to see how we are all doing?? I guess some of you will start to have your first mamogram since your op? Mine is scheduled for the 7th July.
I have been getting a lot of pain under my arm on the breast that I had removed, is it possible to get something come back in that area? Also my breast seems swollen or inflated :womanvery-happy: so not not sure again if something is causing this to happen? Not mentioned to anyone yet but will discuss with my surgeon on the 7th.
Hair has grown back really nice and in some sort of style! although grey, will go for a small tidy up some time this month, but generally happy with it and cannot believe that I actually like it short after spending years trying to grow it a bit longer!
Cannot believe that a year has gone by since diagnoised and all the chemo and rad treatment seems like a blur now.
Apart from the breast pain I am generally very well, apart from an ear infection or something going on with my middle ear, now waiting to have an CT scan to find the route of the problem, been going on for over a month and also have slight loss of hearing! It’'s great getting older isn’t it :womanhappy:
Anyway, look forward to hearing all your news.
Take Care
Lisa x
Hi everyone- lovely to hear how people are doing, for most of us, one year post diagnosis. I’ve had my first mammogram already and although they forgot to give me my results and I had to chase - it was all clear. Phew! My hair was growing ok but then I made the mistake of letting a new hairdresser “shape” it and she cut too much off. So keeping the wig for a while longer. Is anyone else on Letrozone? My oncologist suggested I take the 50mg daily tablet of ibandronic acid to counteract the potential bone loss. I started the Letrozone in Feb but didn’t start the ibandronic acid till 31st May. After about 6 days I noticed arthritis in my hands was painful and by day 8 were so swollen and painful I couldn’t grip anything or fasten buttons. Needless to say I stopped taking it and phoned the breast nurse to report that I was going to trial not taking it for two weeks to see if the symptoms disappeared. Interestingly she said another lady had reported the same issue although it’s not listed as a side effect. Four days of not taking it and my hands are back to their normal, slightly arthritic state and bonus - my ankles have stopped hurting too! Anyone else had this experience? Also if they switch me to Tamoxifen are bisphosponates like ibandronic acid also advised with this drug? Good wishes to everyone with ongoing side effects and pains. Xx