Hi Mog,

I am sorry to hear about the side-effects that you've had with Letrozole. I started out with Tamoxifen 12 years ago, following a lumpectomy. A year later I discovered another primary cancer in the same breast and discovered that, despite the side-effects, I had not responded to the treatment. I then had a double mastectomy and changed to Letrozole. I found that my emotional state improved with this, but the joint pain throughout my body was more severe, to the extent that I had to have both knees replaced. Despite many side-effects, I took this for 6½ years.

Most of these drugs have their side-effects, although some seem to be worse than others.. Some people get no problems at all, so it is certainly worth trying. I do hope that Anastrozole works out for you. Please keep in touch and let us know. We are always here for you.

Kind regards,

Jolamine xx

Hi Jolamine. Thanks for your response. I'm so sorry to hear your story and hope that things are OK with you now. I took my first anastrozole last Tuesday and it has been miraculous in that my joint pain just vanished by Friday! I don't quite believe it and am not going to get my hopes up as I know it may return but for now at least  can crochet again - and get the top off the milk! I'm struggling now with a nasty stomach virus, it seems as fast as I solve one problem another one comes to take its place but I guess that's life. Love and hugs, Mog

Hi Mog,

I am so sorry to hear that you are not happy with your tattoo. Has this girl done your other tattoos? It is so disappointing when this happens, especially when you were getting them done for such a specific reason. I have seen some disastrous tattoos turned into real beauties, when a good tattooist tries to remedy the matter - as you said - more expense.

My type of cancer is quite rare. I understand that only about 1% of breast cancer is of this type. Your image of your uninvited guest is all too real for my liking. I think that anyone who has had a cancer diagnosis lives in fear of the cancer returning. This is something that we have to learn to cope with and, it's not easy! I am so sorry to hear that you had another sleepless night. It is so totally frustrating when you know that you're tired, but just cannot get to sleep. I was the opposite last night. I got almost 6 whole hours of uninterrupted sleep. I haven't had this much sleep for over 6 years. I am usually up every hour to go to the toilet, then when I return to bed, I can't get back to sleep.

Did you manage to get some of your cards made today? I find it very difficult to do fine work like this now, as I just don't have the fine motor skills any longer. Picking up fine things is amost impossible. It must have been great to have two such close friends throughout your school years. Did you keep up with them after you left school?

As you know Mog, I am always here for you - I won't be running away, no matter how much you moan - as i said before, we all have bad days, but there are brighter ones ahead too.

Regards,

Jolamine xx

Dear Jolamine, here I am during daylight hours, a real rarity for me. I have made an appt to go back about my tattoo at 9am tomorrow, wish me luck!! My 2 friends that the tattoo is meant to be honouring weren't school friends. S, my dearest friend I met when I was 25 and she became more important to me than anyone else in my life. I met her about 18 months before my marriage broke down and she was amazing. I often think that she is the reason I got through it. When I couldn't eat and lost so much weight I almost wound up in hospital she got me eating again with home made coffee and walnut cake and masses of tlc. I met M when I was about 36 when we both belonged to the same craft club. I won't   bore you with the details but I had something pretty nasty happen when I was badly betrayed by someone who was supported by a group and she was the only one who stood by me. It's difficult to explain properly without giving too much away but after I left my home town I no longer saw so much of S although we talked on the phone all the time and she was always the first person I would turn to in a crisis. When S died I was devastated absolutely devastated. After I lost her M became my closest friend and she helped me get through that loss. Just a year after S died I lost fist my Dad and then my Mum a few months later and again M was a huge help to me. Then, just a year after that she died very suddenly. I can't even put into words how much I miss them. I know I was very lucky to have such wonderful women in my life especially as I wasn't blessed with a good family but it does make their loss especially hard to bear. 

If it isn't giving too much away can I ask whereabouts in the country you are? I am in the West Country and can't help wondering where you are, just vaguely. If you are in Scotland I can be pretty sure you are not somebody I might know!!

I have a whole new thing to worry about after watching Davina McCalls documentary last night about the menopause. As I am taking the anastrozole to kill off my oestrogen I was rather alarmed to find how important it is for brain function. I am now more convinced than ever that the brain fog I am really struggling with is not "chemo fog" as I thought it was originally but is now caused by the lack of oestrogen. It seems that taking testosterone can help. Have you heard this? I am going to ask about it when I see my oncologist but he's not very approachable so I'm not expecting much joy from him. I don't want to feel this way for the rest of my life. I am so miserable most of the time, permanently tired and tearful and the pain in my joints is getting worse and worse. I am really struggling to find any positives in my life. I do have something to look forward to - my best friend is coming from my home town to visit me for the day (isn't it strange how friends get bumped up the list when the one at the top dies? She has always been a very good friend and now she is the proud owner of the title "Best!"). I know we will have a lovely day and I will be "happy" whilst she's here but I also know that once the day is over I will crash back into depression. Did you suffer with low mood? How did you cope? I just don't think I can take another four and a half years of this.

Enough moaning for now, I had better get on and do something productive with my day. Thanks for listening, Mog, xx

Hi Mog,

I so happy that you have arranged to go back to see what can be done about your tattoo and I hope that it all turns out better this time. You have been through a lot in your life. I am so glad to hear that S was there for you when your marriage broke down and that she was able to get you eating again. I can understand why she left such a hole in your life when she died, but you were fortunate to have M to turn to then and again when you lost your parents. What an absolute tragedy to then lose M so suddenly - this must have come as a terible shock at the time.

I am in Scotland, so it is unlikely that we have ever met. You are fortunate to live in the West Country. I’ve had a few holidays down there and my son lives in Wiltshire with his family. It is a beautiful part of the country and so much warmer than it is up here.

Yes, I had heard that testosterone can help with the oestrogen deficiency, but I didn’t hear thins until after I had stopped taking Letrozole. However, I suspect that this might produce more facial hair, among other things – that list for your oncologist must be growing!

I’m sure that you’re really looking forward to seeing your new best friend from your home town. Are you expecting her to visit soon? Yes, I did suffer with depression whilst I was having treatment. I was prescribed Venlafaxine (a mild anti depressant) to help reduce my night sweats. However, I still have a lot of challenges going on in my life and, I am now reluctant to stop taking this.

As you can see, I am still burning the midnight oil, but I hope that you are fast asleep by now.

Kind regards,

Jolamine xx

Morning Jolamine. Just read your kind post. Yes I'm awake in the wee small hours once again listening to my newest, and therefore favourite playlist. I was very slow on accepting technology and have only had a smartphone for about 18 months. The best thing about it by far is my spotify account and my many playlists. Current favourite is country music with a lot of Johnny Cash, Dolly Parton and especially Don Williams. Even if you're not a country fan his song "Lay down beside me" is well worth a listen. If I was ever mad/lucky enough to marry again it would definately be my first dance song, it has beautiful lyrics.

Glad to hear that venlafaxine is helping you. As you know it violently disagreed with me when I tried it so I am back on the mirtazapine. Can't stop thinking about the documentary and the possible damage the anastrozole is doing to my brain. With my father dying of vascular dementia I am already worried about having that myself so want to do everything I can to stop that being my fate too. Deliberately damaging my brain is the last thing I want to do. I have decided that when I do the NHS predict if my gain in preventing another tumour is only one or two percent I will stop the anastrozole and take my chances. I want my life back.

I was interested to hear that you are in Scotland - what a lucky guess on my part. I have never visited Scotland but number one on my bucket list is to the 500 around the coast and I'd also love to visit the outer Hebrides. I've never flown so would tick that off my list by flying probably to Aberdeen to start my Scottish adventure. I expect it will remain a dream as I have no one to do it with and I'm not brave enough to do it by myself. Ah well, I can dream. Though not at night it seems!

Have a good day, Mog, xx

Good Morning Mog,

Have you tried any of the tried and tested waysof getting back to sleep? Some people find mindfullness helpful. My best way so far is to keep counting backwards fromm100-1 and repeating this untill I eventually fall off.

I have always enjoyed country music and am a great fan of Johnny Cash, Dolly Parton and Don Williams. I am very familiar with "lay down beside me". The lyrics really are beautiful. 

I have never visited any of the Scottish islands myself, but would love to do so one day. I was given medication for my pain which caused forgetfullness and lack of concentration. Despite stopping the medication, I still have bother in this area. This worries me too, as my father had vascular dementia, as has my mother-in-law and now my husband.

Aw well, I'm back to bed again to see if I can doze off again.

I hope that you have a good day.

Kind regards,

Jolamine xx

Hi Jolamine. Just a note as this is my 3rd attempt to message you. My texts keep disappearing into the ether. You may get bits of them or not. Who knows? I am going to give up for now and try again another time. Good to hear from you, take care, Mog, x

Hi Mog,

It is so annoying when this happens. I have lost so many posts, that I now write them in word and copy and paste into the forum - at least that way you always have a spare copy of your post. I hope that you are feeling ok and that you are enjoying your weekend.

Kind regards,

Jolamine xx

Hi Jolamine, how are you? Good I hope. Just had a weekend of 2 halves. Saturday was wonderful as I spent the day with my best friend who came up to see me on the train from my home town. We went out to lunch and then on to the coast where we had a very pleasant afternoon in the sunshine. Came back to my place to spent the last hour before her train home only to find out that it had been cancelled. (Her hubby rang to tell her) So we had an extra hour to chat before the next train which was lovely but it did mean that it turned into a very long day. Fell into bed exhausted and didn't wake until 9.45 Sunday morning when I was woken by the phone ringing. Felt tired and very achy all day yesterday and generally quite low. It was so lovely to see my friend and I do wish that we still lived in the same town so that I could see more of her. I am hoping to feel well enough by September to go down and spend a few days with her and her husband. Hopefully!!

I am off to the hospice this morning for the once a month "Time to talk" session. Although it is the only group that I go to that is only for us cancer sufferers we actually never seem to talk about cancer or only very rarely. Also although it is open to anyone with cancer it is all women. No sight of a man, not even once. Maybe men don't feel the need to talk like us women!

Hope you have a good day, take care, Mog, xx

Hi Mog,

I am so glad to hear that you enjoyed your friend's visit, even if it was a long and tiring day. Still, it's good to hear that this helped you to have a good night's sleep. It's a pity that syou don't live a little closer to one another, but I'm sure that you will be able to look forward to visiting her in September.

I hope that your talk session went well yesterday morning. I pop in to Maggie's or the Haven from time to time. We only very rarely talk about cancer too. We have quite a mixture of men and women. We spent Saturday doing a tour of local garden centres, which I enjoyed, although my hubby wasn;t so enamoured!

You will feel down not having the company of your friend, now that she has returned home - hopefully, your chat yesterday morning made you feel a little better?

Hope that you have a good day today.

Regards,

Jolamine xx

Good morning Jolamine. How are you? Once again I am having a bad night. The past 2 nights I have been woken by really bad night sweats. Did you suffer with them? Sorry if I've asked you before, can't be bothered to read back all our messages! I seem to either have broken sleep with the night sweats or no sleep at all. Either way I am permanently tired!

It was good to meet other cancer sufferers on Monday at the hospice. There were 5 of us, a good turn out as there is quite often just me and one or two others. With 4 staff who do nothing but sit and chat with us - and make us cups of tea - it's a wonder they keep the sessions going. So far no men in sight at "Time to talk" but there is a group called "Men in sheds" where men meet (in a shed as it happens) and they make things from offcuts of wood. I actually bought one of their bird boxes on Monday, just £5 and it is already set up in one of the trees opposite my lounge window. Wonder If any birds will use it?

Yesterday I did my first modelling session for the lovely lady who microbladed my eyebrows for me as they showed no sign of returning. She is doing a facial massage course and needs someone to practice on. I was happy to help and it was a very relaxing hour. It's not something I would ever have considered doing as I have never had any beauty treatments at all. Just not on my radar, better things to spend my money on! It's funny but we were only saying on Monday how having cancer has made us do things we'd never have done and meet people we'd never have met. If there is a positive to be taken from this cancer "journey" it is those 2 things.

Today I have my oap (non) cancer support group in the morning and my ladies group in the afternoon and then I need to do some shopping so a busy day ahead. I'm going to try and get some sleep now so I'll end this message

It's so good to have you to talk to. Take care and have a good day, Mog, xx

P. S. Joint pain very bad, it's now in my finger joints as well as my wrist and thumb joint so I am really, really struggling with very painful hands. Not good! 

Good morning Jolamine. How are you? Once again I am having a bad night. The past 2 nights I have been woken by really bad night sweats. Did you suffer with them? Sorry if I've asked you before, can't be bothered to read back all our messages! I seem to either have broken sleep with the night sweats or no sleep at all. Either way I am permanently tired!

It was good to meet other cancer sufferers on Monday at the hospice. There were 5 of us, a good turn out as there is quite often just me and one or two others. With 4 staff who do nothing but sit and chat with us - and make us cups of tea - it's a wonder they keep the sessions going. So far no men in sight at "Time to talk" but there is a group called "Men in sheds" where men meet (in a shed as it happens) and they make things from offcuts of wood. I actually bought one of their bird boxes on Monday, just £5 and it is already set up in one of the trees opposite my lounge window. Wonder If any birds will use it?

Yesterday I did my first modelling session for the lovely lady who microbladed my eyebrows for me as they showed no sign of returning. She is doing a facial massage course and needs someone to practice on. I was happy to help and it was a very relaxing hour. It's not something I would ever have considered doing as I have never had any beauty treatments at all. Just not on my radar, better things to spend my money on! It's funny but we were only saying on Monday how having cancer has made us do things we'd never have done and meet people we'd never have met. If there is a positive to be taken from this cancer "journey" it is those 2 things.

Today I have my oap (non) cancer support group in the morning and my ladies group in the afternoon and then I need to do some shopping so a busy day ahead. I'm going to try and get some sleep now so I'll end this message

It's so good to have you to talk to. Take care and have a good day, Mog, xx

P. S. Joint pain very bad, it's now in my finger joints as well as my wrist and thumb joint so I am really, really struggling with very painful hands. Not good! 

Hi Mog,

I'm sorry to hear that it's another painful and sleepless night. Yes, I had a lot of bother with night sweats and still do - they never really stopped. I'm glad to hear that you enjoyed Monday's meeting. Sometimes it's better when there aren't too many people and you all get a chance to talk. You should get great enjoyment out of watching the birds from your lounge window. We have a lot in our garden and I love watching them.

Your modelling session sounds like a lovely relaxing break and, why not venture into activities that you'd never have considered before? Today sounds like a busy day, but I'm sure that you'll enjoy getting out of the house and having some company.

I hope that you manage to get some sleep.

Regards,
Jolamine xx

Hi Jolamine, how are you? I am sitting enjoying the last of the sunshine. I've just fetched my bedding in off the line - I do love line dried bedding! Been a bit of a rough few days. I have had to leave the ladies group that I have been going to on a Thursday afternoon. One of the ladies who runs it had a real go at me for coming in early and made me cry. She likened me to a German putting a towel on a sun lounger because I always go straight to the craft table. I was made part of the craft team a few weeks ago so I don't quite understand where else I should go. Anyway it all got very unpleasant, other people got involved and in the end I just left. I am very sad and hurt by one person in particular. The lady who shouted at me is the person who runs the bereavement group that I've been going to for 4 years, since the very first meeting in fact. I've only missed a few meetings because of hospital appts but every single time I have given her a lift home. She expects it, doesn't even ask anymore. I hang about waiting for her to be ready to leave for half an hour or more and then go out of my way to drive her home. Well no more. The worm has turned and I am going to go to the bereavement group run by the hospice instead. Maybe they will treat me better. I know I should stand up for myself but I just don't have the courage, or the energy. Why can't people just be nice?

I am also thinking about volunteering at the hospice as they want an arts and crafts person and that could be me! I have a Reiki session on Tuesday so I'm going to ask about it then. The only sticking point may be references as they want 2 and I have no idea who I can ask. The lovely headmaster from the 10 years I volunteered in school with retired the same day I gave it up so I can't ask him. Hopefully something can be sorted out. I also have asked about visiting inpatients who have no family or friends to visit them.

Well the bench is in the shade now so I'm going to go in and have something to eat and a bath before eurovision. Do you watch it? It seems likely that Ukraine will win as they will certainly get the sympathy vote. We will see. Have a lovely evening whatever you are up to, Mog, xx

Hi Mog,

What a lovely feeling to lie in fresh bedding straight off the line - I love it too.

I am so sorry to hear about the bother that you've had with your ladies' group. It sounds as if it was very unfair of the lady who shouted at you like that, especially when you have helped her out with lifts. It must have been very upsetting, especially when others got involved.

It would be great to be able to provide some arts and crafts in the hospice. Could you get a reference from your GP?  You will probably have to go through a DBS disclosure before you are taken on by the hospice and they will possibly pay more attention to the results of that than any reference. Most hospices are keen to get volunteers coming in to visit patients who have no visitors. Here's hoping that you can work someting out.

Did you enjoy Eurovision?  I was glad that Ukraine won, although it was a pity that they knocked the UK off the no 1 spot. The weather was lovely here yesterday too. I planted some summer bedding plants and then we had our first barbecue of the season, which we really enjoyed.

Regards,

Jolamine xx

Hi Jolamine. How are you? I can't believe it, once again my whole post to you and it was a long post has just disappeared. I scrolled back to check on something you had said and when I scrolled back down to continue my message it was gone! So frustrating. I have to get up very soon to go to my oap group to see my lovely friend J who has dementia. She is very sweet but very hard work too. Not going to my ladies group this afternoon. I did meet with the leader of said group on Tuesday morning but un surprisingly she backed her friend who had shouted at me and basically said that it was my fault for coming in early. If I had obeyed the rules she wouldn't have to say (shout) anything. She did agree that I shouldn't have been spoken to in that way and she would speak to her. I'm giving the group a miss this week. After J and the OAP's this morning I am going to come home and chill til it's time for my second facial massage which I'm really looking forward to. 

I really wanted to ask you about your joint pain. Just how bad was it? Did you find any good pain relief? I'm really struggling. The pain in my hands is becoming unbearable and I'm not sure I can cope with this for another 4 and a half years. I can't even open the milk without it really hurting and even if I don't use my hands the ache so badly it keeps me awake at night. I've tried extra painkillers on top of my usual drugs for my spinal injury and also topical stuff like voltarol all to no avail. Any suggestions gratefully recieved! 

I'm sure I had other stuff in my last post. Ah yes you should look up the artist Katherine Stephenson. Especially her bunny pictures. I've just bought 2 to hung on my newly decorated craft room wall when it is finally is decorated that is. I adore cats and horses but rabbits stole my heart when I was just 9 and got my first one as a reward for passing my 12 plus exam. I went on to breed and show them for many years. Not many people know that about me so you are one of the chosen few! 

Got to get up now and on with my day. Hope you have a good day too whatever you are doing. Take care, Mog, xx

. 

Hi Mog,

I feel for you. I have lost so many posts on this site, that I now try to write them all in Word and then paste them into the forum. It is always the long posts that disappear too. I’m glad to hear that you managed to speak to the leader of the ladies’ group and to discuss your upset at the way you were spoken to. I hope that she does have a word with the lady who dressed you down. There are ways of speaking to people quietly if they felt that you were doing something wrong and this certainly wasn’t the way to do it. I hope that your OAP group today was more enjoyable, even having to deal with your friend J. Dementia is such a hard disease to cope with. My hubby has it, so I’m all too familiar with the associated problems. Did you get your second facial massage today? What a lovely way to relax!

My joint pain was about as bad as it gets, but it’s hard to tell if I would have had this without treatment or not. A very large number of people in this country suffer from Arthritis, due to the climate that we are living in. I cannot take Ibruprofen, as this upsets my stomach badly. I tried Amiltriptyline, which did nothing for the pain. I was then prescribed Gabapentin, which helped a little, but after I had been taking this for about 2 years, I had to stop because it was causing me to lose concentration and memory. At that point my knees were just too sore to carry on and I had both replaced.

The pain in my hands has caused arthritic nodules and swollen fingers, which have dramatically reduced the mobility and strength in my fingers and hands – this associated with the eyesight problems, has made sewing and knitting a lot more difficult. I also have Lymphoedema in both arms and attend the clinic for two weeks in every 12 to have manual lymphatic drainage. I have to wear surgical sleeves from my shoulder to my fingertips. These can get very uncomfortable and hot at times and I get a lot of pain in both arms. I still have pain throughout my body. I have seen several physios throughout the years, until they all eventually advised me that my lower lumbar spine has fused and that there is nothing more that they can do for my back. They then advised me to bend forward and use a zimmer to walk with, in order to take some of the pressure off my spine. I have always had a very erect posture and I was advised that this was no good for me any longer. I find that standing for any length of time is even more painful than walking, so I now use a mobility scooter to get around. My hips also give me a lot of pain and it looks as if I’ll soon have to get them replaced too.

I have just looked up some of Catherine Stevenson’s pictures. They really are lovely and the ones that I have seen of rabbits would brighten up any room. I had a white angora rabbit when I was about 10, but I never reached the heights of showing him.

I had quite a relaxing day today too. I went to the hairdressers and read my book for 3 whole hours. It was a lovely night, so we managed to eat in the garden, which was nice. I just noticed your friend request yesterday, so have replied to it. I tried to send this to you via private messaging, but it wouldn't send. Perhaps you could try replying to me this way and we'll see if it works the other way around? I hope that you manage to enjoy the coming weekend.

Regards,

Jolamine xx

Hi Jolamine. Sent you a really, really long post via the friends link 3 days ago and it seemed to send OK. You usually reply quite quickly so now I'm not sure if you got it or not. I really can't write it all out again so I hope you will see it. If not I know you will get this. Having an awful time at the moment. Feeling quite desperate and misunderstood. The world is such a cruel place sometimes. I'll leave it at that as I need to know if the other message got through. If it didn't then what is going wrong and how do we fix it? Hoping you're OK, hugs, Mog, xx