Hi Mog,

It sounds as if you've had a busy 3 days, but I'm sure that you feel happier for having got the job done! I love your choices for your tattoos. - hope that you're already thinking of the one you want when you are cancer free! I don't have any tattoos, but I have planted forget me nots, after we lost my parents in law within just a couple of months of one another. They were an inspitarional couple, who lived to their late nineties and we miss them sorely.

I used to enjoy my garden, but am finding it a chore now. Both knees gave me a lot of trouble when I was taking Letrozole and I had both replaced. My back also gives me a lot of pain, so bending is out of the question. I have over half an acre, which is just too much for me now. I really think that we'll have to start looking for a house with just a postage stamp to sit in.

I hope that you get you Mirtazapine tomorrow and that you soon feel the benefit of it.

Kind regards,

Jolamine xx

Hi Mog,

Don't worry about being on a 'downer'. We refer to the cancer journey as a rollercoaster - up one minute, down in the doldrums the next. We are here for both, especialy the bad days, because we know how miserable they can be from personal experience. I am so sorry to hear that you are still having problems with your tummy. It might be worth seeing your GP about this, as it could be due to something other than the Venlafaxine. It doesn't sound as if the Anastrozole is doing much better, when you are still having so much pain - I think that most of the hormone treatments have side-effects, but some are worse than others.

Make sure to ask your oncologist to do the NHS predict test when you see him. This should give you the information you need to choose - something that I feel we should all be able to do.

The scariest thing for me was when I started to lose my sight as a result of treatment and had to wait 15 months for an operation to restore it. I was so furtunate that it could be restored, but that was a very scary time. Like you, I have lived with back pain since I was in my twenties, when I had a car accident, but it got considerably worse during treatment, as did every joint in my body. My hands have arthritic nodules on the fingers now and are very stiff these days. I cannot stand for any length of time, so I rely on my car and my mobility scooter to get around. I often thought of stopping treatment, but I didn't have chemo or radiotherapy, so I felt that I had to give this a try. I still have some permanent damage, but the one good thing to come out of it all is that I am still here nerly 13 years on. You are so right, we all worry about chemo and radio, but nobody really tells us of the devastation that hormone therapy can cause. I expect that, if they did, we would all think twice about taking it!

Your garden sounds just like what I now need. It must be great to have the pleasure of a garden without the pain (quite literally)! Your horse riding accident sounds awful. My son broke his neck in a fall two years ago. He has a Mecanno like structure in it now. This year he had to have surgery on his back for a prolapsed disc, so I have some idea of what you went through.

We lost my parents-in-law 3 years ago. My 97 year old father-in-law cared for my mother-in-law, who was bed bound and had vascular dementia, for six yers. Just after she died, he complained of a sore back. We took him to the GP 5 times, to be told tat it was 'just arthritis' and given a rub. On the fifth occasion, the GP referred him to the day hospital. He was admitted straight away and we were told that he had bowel cancer, which had spread throughout his body. He was given weeks to live, but only lasted 5 days. I was closer to them than I was to my own parents, so it is a big miss. I am sorry to hear that you had a similar experience. Losing your friends can often feel worse, because it reminds us of our own mortality. I am glad to hear that you have made the appointment to have your tattoo.

I can assure you that I don't regret for one minute replying to your thread. This is exactly what I am here for and, I fully understand what you are going through. It might not seem like it at the moment, but there are brighter days ahead.

Love,

Jolamine xx

Hi Jolamine, lovely to hear from you again. Sorry to hear about your in laws. I lost my father to vascular dementia so know how awful that is. My Dad went from a bit forgetful to dead in just over a year and it was the fastest decline his consultant had ever seen. It is truly the most cruel of diseases, his last few months were so distressing, really awful. So much so that I was actually glad when he died and his suffering was over. Just a few months later my Mum fell and broke her hip and during her 5 weeks in hospital she developed ulcers from bed sores and came home needing carers to help her twice a day. She was such an independent person she hated this intrusion into her home and her life. Just 10 days later she took her own life. I was woken by uniformed police at 4am to be given the news. It was a very dark time in my life, especially as I lost my 2 best friends either side of my parents. It was a lot of loss in a sort space of time and although it was 5 years ago now it still feels very raw. I am only too aware of how much support they would have given me if they were still in my life. I did have a very good friend who I thought I could rely on but she couldn't deal with my cancer at all and after my first chemo she told me she couldn't be my friend any more and I've not seen her since. That was a very difficult thing to deal with and it left me with no one close at hand to help me. My other good friends are both about 70 miles away and although they have been brilliant with phone calls and texts ( and funny videos of cats!) they are too far away to be of any practical help. Luckily I have good neighbours but I miss have having a close friend nearby. It's difficult to make new friends when you feel so low. I'm afraid I don't have much in the way of sparkling repartee these days!!

It sounds like we have quite a lot in common with us both having back problems although we got our injuries in different ways. I often think how different my life would've been if I hadn't had the accident. I wish I could go back in time and make sure my horse went over the jump with me on board instead of her dumping me on the fence! How is your son, does he suffer with any lasting effects from his accident? I think it was Oscar Wilde who said that horses are dangerous at both ends and uncomfortable in the middle! Having said that some of the happiest times of my life were spent on horseback so I can't wish that time away, I just wish it hadn't ended the way it did. People focus now so much on the cancer that they forget that I'm struggling every day with awful back pain. Life doesn't get any easier does it?!

How are you doing now? Your sight issues sound absolutely terrifying. Living alone and being such a big crafter my sight is absolutely vital to me. It's not a side effect I was aware of, do you know how common it is? Did you have sight issues before treatment? My joint pain seems to be getting worse with my knees getting very painful too so much so that I am seriously wondering if I can go on with the anastrozole. In the end I need a decent quality of life or else what's the point? 

Good as always to have this link with someone who understands about the cancer and  other things too it seems. Take care, love Mog

Hi Mog,

I am so sorry to hear that your father had vascular dementia too - it's such a horrible disease. It is so cruel to see an intelligent person robbed of their senses. Like you, we were glad when my mother-in-law's suffering ceased. We had to get carers in 4 times a day at the end, but this was a terrible intrustion and neither of them were happy with it, so I can appreciate how your poor mother felt. Even though you weren't close, it must have been an awful shock to lose her in this way. I can understand what a dark time that must have been for you, especially with losing your 2 best friens either side of your parents. Unfortunately, my hubby now has heart failure and vascular dementia, along with diabetes and Parkinson's Disease, so I feel as if we are back on this treadmill again.

If cancer teaches you one thing, it teaches you who your real friends are. I had a similar experience with friends who I thought would always be there for me, but quickly disappeared into the ether after my dianosis, yet others, who I least expected to, have really stepped up to the mark. A lot of people discover this on their cancer journey. It is a great pity that your remaining friends all live some distance away, as you could really do with some support closer to hand. Do you have any support from family?

It does sound as if we have a lot in common. The one thing that we don't share is a love of horses. I come feom farming stock and all of my family rode. I was forced to go to pony club camp with my pony, when I was younger and I absolutely hated it - I think because I've always been a bit afraid of horses. My son is waiting for a third cortisone injection to see if this helps. However, he had to stop work, as he has no feeling in some of the fingers in his left hand. He relied on his hands completely to carry out his work, so this was no longer viable. He is due to have another operation to try and free the nerve a little more, but the doctors want to try another injection first and cannot guarantee success. 

I don't know how common sight loss is with treatment. In the BNF it lists cataract, eye irritation and blurred vision as side-effects. I had an operation on my cataracts 3 months apart, then had to have another one, as they inserted the lens 25º out. Two years later I had a complication from the cataract surgery and began to lose my sight. I had 2 further operations, which have restored my sight and I still need 2 further operations to reduce the pressures in my eyes. However, I feel very fortunate to get my sight restored, as it meant that I could get back to work, could read, sew and drive again. My only issue before treatment was short sightedness and I have worn glasses for this since I was 2 years old.

I am interested to see what you decide to do with your treatment. Remember that the decision has to be yours and yours alone, as you're the one who has to live with the outcome. I sincerely hope that you make the right one for you.

Kind regards,

Jolamine xx

Hi Jolamine, how are you today? I was interested to hear that you had similar issues with friends not wanting to remain friends once they knew you had cancer. It really broke my heart when she just vanished from my life, blocking my number and all without a reason. I asked a mutual friend why she had done it but got no answer there either. I was left with the conclusion that if it wasn't anything I'd done then it had to be the cancer. It's been almost a year now and I still miss her. She was my book buddy, the only one of my friends who read as much as I do and I have no one to talk about books with. Ah well, there's nothing I can do about it, you can't make someone be your friend, or stay your friend. It hurts though.

Like you I have been short sighted all my life, wearing glasses from the age of 6 and now have quite an assortment of contact lenses, ordinary glasses, glasses for reading, glasses for reading when I have my lenses in, sunglasses - I am constantly changing eyewear!! As I spend a lot of time crafting I am terrified of losing my sight. My life genuinely would not be worth living if I couldn't craft. My mum was diabetic and had lots of laser treatment on her eyes and lost parts of her vision. She was an amazing artist and I know it was tough for her when her vision problems got worse. I really don't want to go down that road.

I hope your son has a good result from the injection and is able to avoid further surgery. One one my worst, and long lasting effects from chemo is numbness of my fingers and feet. My fingers are a nuisance as I struggle with small and fiddly things, doing up a necklace for example, but it is my feet that drive me mad. I am constantly flexing them and wiggling my toes trying to get some life back in them even though I know I can't. It's extremely frustrating and showing no signs of improving. I have spoken to quite a few people now who have had chemo like me but not one of them suffered any numbness. I guess I'm just lucky!

Well I guess I'd better get on. I have to go out later to a meeting of the management company and all the leaseholders where I live. It's going to be a very difficult meeting, our first agm since covid and there are a lot of contentious things to discuss. I am NOT looking forward to it at all! 

Hope you have a good day, love, Mog

Hi Mog,

The issue with friends is a common one with cancer patients. Some people just don't know how to deal with it or what to say. Others find it too close to previous painful expeiences of their own. However, it can be very upsetting. Would it help you to join a book or reading club? You might make new friends that way.

I have been through the assortment of glasses stage. I wore the hard contact lenses fo0r many years before I had to stop because my eyes weren't getting enough oxygen. I tried the soft lenses, but somehow or other, I never got on with them and eventually returned to my glasses. One good thing about all the eye surgery that I,ve had is that I now have long sightedness and only have to wear glasses for close up work. However, it does make things like threading a needle on my sewing machine particularly difficult now. I rely on my sight for my profession, my hobbies and my driving, so I have always been terrified of losing it too. This is especially important, as my hubby can no longer drive now, ue to the dementia, so he relies on me to take him everywhere.

We are hoping that the injection helps my son, but are not over optimistic, as the last two haven't done anything. However, it's a case of wait and see at the moment. The numbness of the hands and feet are sadly, a fairly common effect chemo.

I hope that your management meeting this afternoon goes well and, that you get some of the contentious issues sorted.

Kind regards,

Jolamine xx

Hi Jolamine, thank you for your reply. I am in total agreement with you about how vital our eyesight is and the fear of losing it is always with us especially when you are a driver. I too would be absolutely lost without my little buggy. A car gives me my independance and I'd hate to give it up and be reliant on taxis or friends to get from a to b, or more realistically in my case, to the hospital or hospice!

The meeting yesterday was absolutely horrible. I won't bore you with you the details but I have been very down today to the point that people at my ladies group commented on it. Its like being back at school with all the gossip, snitching and back stabbing that goes on now. I've lived in this complex for 17 years now and it is not the nice, considerate and friendly place that it used to be. When I left school more years ago than I would care to admit, I thought I had left the bullies behind but that is exactly how I feel again. It feels especially cruel at the moment as everyone here knows my situation with the cancer. Nothing like kicking me when I'm all ready down. I wish so much that I had someone in my corner not to fight my battles, but at least help me fight them. I wonder if I would be treated as badly if I had a big strapping fella in my life?!

Sorry, I'm having a real moan aren't I? Can I ask you, did you find that once you had competed your chemo and radiotherapy that people thought that you were "better"? The fact is that I genuinely feel worse on this awful hormone suppression therapy than I did on chemo. I can't sleep (explains my mid night posts!) have flushes and sweats and the pain in my joints is getting worse and worse, but that's OK, I'm "better". I just haven't the energy to explain it to people so when people tell me how well I look and how glad I must be that the cancer is either "gone" or "cured", I just smile and say I am but I wish they understood that cancer changes your life forever. That's why I love being able to talk to you. You get it. It must be several posts ago so forgive me asking but how long were you on letrozole or anastrozole and how long ago did you stop taking it? I am worried that the pain in my joints is causing permenant damage and that if I take it for the years that I'm meant to that I will have this awful pain for the rest of my life. Counting the days til my next oncologist appointment when I will definately ask him to do the NHS predict to see if this misery is actually improving my chances of the cancer staying away by very much. Did you find out your percentages? If so what were they? I'd like to know how you made your decision to take it.

Well I'm going to try and get some sleep if I can. I'm off to get my forget me not anklet tattoo this afternoon. I'm looking forward to finally doing something to mark the loss of my 2 amazing friends. I was truly blessed to have had them in my life and miss them very much especially this past year when I know how supportive they would've been on this cancer journey. They were wonderful friends and interestingly they both had amazing husbands too, true gentlemen and I was very fond of them too. A big hole in my life, difficult to fill. Anyway in a few hours I will have a constant remembrance with me forever. Have you got any tattoos? Seems a much more common thing these days. Wonder why it has become so popular. When I was a kid the only people I knew with tattoos were ex servicemen but nowadays it seems that people of all ages and all walks of life have them. At least now I don't have to worry about what they will look like when I'm old - I am old!!, Enough now, I'm going to sign off now and hope to get a couple hours kip, wishing you a good day, hugs, Mog, xx

Hi Mog,

I am so sorry to hear that your meeting didn't go well. This is the problem with living in a small community. Although they may look ideal on paper, it all depends upon who your neighbours are. I am so so sorry that you feel that there is no one to help you fight your corner and, that you feel that you have to fight it in the first place. We may expect people to be sympathetic to our cancer situations, but not everyone is. I didn't have chemo or radiotherapy, which was why I felt that I had to perservere with the hormone therapy.

 You are right that most people thought that I was better as soon as I had surgery. However, I didn't feel better. Like you I put a facade on and agreed that I was glad to have it all behind me. Cancer does change your life forever, but people don't always realise this. For a start, there is always the fear of recurrence, which we have to live with.

I took Tamoxifen for the first year, following a lumpectomy. When the cancer returned a year later, I had a double mastectomy, followed by six and a half years of Letrozle. I stopped taking this in July 2017. My cancer is pure mucinous cancer, which only occurs in 1% of breast cancers. I caught it very early and was assured that I didn't need a test, because this was a less aggressive type, which very seldom spread. As a result of this assurance, I was quite shocked when I found a second primary so soon after my surgery. 

I had been advised to have radiotherapy after my first surgery, but, due to a series of administrative delays (a long story!), I never had it. As far as hormone therapy was concerned, it was either that or nothing. I lost my own Mum to breast cancer and didn't want that to happen, as I had 2 young teenagers at the time.

I hope that you managed to get some sleep eventually last night. I trust that you got your tattoo done too and hope that you are happy with it. - such a lovely tribute to your friends. No, I don't have any, but I expect that they've become more popular with so many pop stars and celebs having them.

I hope that you have an enjoyable weekend.

Kind regards,

Jolamine xx. 

Hi Jolamine! Lovely to hear from you as always. Lying here in bed after yet another sleepless night and still feeling pretty miserable. Last week was really hard and ended on a bad note - I hate my new tattoo. I have had such a clear picture in my mind for so long and was thrilled when I found a picture of a tattoo online which exactly matched the image in my head. I showed it to the tattoo artist and we chatted about it and I was sure she knew what I wanted. Unfortunately lying down while she worked on my ankle I couldn't see what she was doing and even when it was finished and I looked in the mirror it was quite bloody and being short sighted I didn't see it too clearly so it wasn't until I got home and unwrapped it that I could really look at it and then I just sat and cried. It's hideous. My honest friends have said that it looks like a child has done it, they could've done better themselves or, most damming of all that the leaves look like slugs, which they do. I know I only have myself to blame but I am so disappointed. I am going to go back and see if anything can be done to improve it and if that doesn't work I will have to think about getting it removed. More expense. Why, oh why did I have it done? I wanted it as a tribute to 2 amazing women who I loved very much and miss daily and its far, far from that.

I was sorry to hear that you lost your mum to breast cancer. I've never heard of your type of breast cancer but then I'm not very sure of my own! All I really remember is that the oncologist said that it was a grade 3, very aggressive and fast growing tumour. Although it was removed with clear margins because it was so aggressive I am terrified that it has left some tiny cells behind that have survived the chemo and radiotherapy and are biding their time waiting to take up residence in my boob again. I picture my tumour as a small spikey, black creature with big teeth who was living in a small cave right at the back of my breast on my chest wall happily munching his way through my oestrogen. My fear is that before my surgeon rudely evicted him he had secreted his little offspring where they couldn't be found. I'm waiting for them to grow up and make their presence felt. Is that mad? Am I the only one who thinks of their cancer like this? It's because of the tumour's liking for oestrogen (& progesterone too, although nobody ever mentions that) that I am taking the anastrozole which is making my life a misery at the moment. The pain in my joints has now spread to my fingers so now alongside the numb fingertips I have very painful joints as well. Whilst my wrist pain is worst on the left it is my right hand that is by far the worst finger wise. My papercrafting is becoming almost impossible as I can't colour for very long and can't manage tiny gems, bows and charms either. The cards I am producing now are very different to the ones I used to be able to give to people and that upsets and frustrates me more than I can even put into words. I end up in tears most of the time.

I am so sorry to be such a misery again. I am beginning to feel that you are the only person I can tell all this to. I don't tell anyone else because I'm afraid they will leave me just like my closest friend here where I live. Unfortunately I've never had a big circle of friends just a few very close ones and I've been content with that. At school my best friends were twins and we were like the 3 musketeers, pretty much inseparable and a self contained unit of 3. That set the pattern for the rest of my life and now I only have 2 really close friends but although I am emotionally close to them we are not close in miles as they are both quite a distance away, one to the north of me and one to the south. Since I lost my 2 very best friends several years ago, one to cancer, the other to an aneurism and then the latest one who ran for the hills as soon as the c word was mentioned I have no one close that I can tell all this stuff to. Thank you so much for being there for me, I appreciate it more than I can say. 

Well it's light now so I think I should get up and maybe try a little crafting - I have a few cards I need to make for people with birthdays in May. I hope you enjoy the rest of this long weekend, take care, Mog, xx