It’s over 2 years since I had my operation – yes 2 years wow that’s gone really quickly – plus actually getting used to my new boobs, especially since my last little op. Oh yes and my hair is back and has more curls 😊

On the whole I am doing well, the tamoxifen is the thing I struggle with, it’s odd because one minute i can think i am coping with side effects ok, and then wham they hit me so hard, the being so very very sore, the cramps as if my ovaries are fighting with themselves, my bowels playing up, thrush and the leg and feet cramps – this week has been really hard, my emotions have been high. It started with the GP not allowing me my repeat prescription of cream that contains a small amount of oestrogen – oh and to be told no appointments till May!!!! Open surgery it had to be, I never used to worry about these things but I get stressed quite easily now (something I have to learn to understand and manage) the smallest thing can throw me, open surgery and getting to work at a reasonable time is one of them!

The doctor said she was happy to carry on prescribing but some others in the practice may worry about the oestrogen…….she gave me 1 tube, and said I need to get a letter from the breast institute agreeing I can use it, then I worry what if, what if they say cant use it or still GP not happy. I cant explain how sore I get down there at that time of the month, imagine if i had no cream 🤔 (I am sure it will be ok with breast institute as it was my BCN who told me to use it). The doctor also said I can use over the counter creams at the same time, so stocked up 😂 . I will say the doctor was good she said that after surviving cancer to have the treatment affect me seems so unfair, and we need to think about quality over quantity. So I am to go back if creams dont help.

She gave me 2 thrush tablets to take over 2 days, so I took one that night – I wake up to a red blotchy itchy face, now what – a reaction to tablets, does this mean I can not take thrush tablets ??? I how i cried (silly but it tipped me over the edge) I took the next one that night – thankfully I didn’t have the same reaction- odd.

And to top it off – I have the worse case of that time of the month ever!! And I feel rough.

Still its Easter – a symbol of new beginnings, fingers crossed doctors plan works if not a wonderful amazing lady has told me of an alternative to tamoxifen which seems to be working for her, she told me it’s about self care and push for it to be sorted – I will do this – time to get me sorted 😊 now the kids are settled and know what they are doing from September- they both have exciting times ahead and I want to feel good so I can enjoy with them x

A Note to Our Loved Ones From a Woman With Breast Cancer

Yes, I have had breast cancer. And I fought it. I probably had surgery. I might have had radiation. I might have had chemo. I might have lost my hair. I might have looked differently. I might have acted differently. Thank you for supporting me through that season of active treatment.

But now what? I look “normal” to you. I “seem” like I have good energy. I am acting pretty close to the way I used to, or so it seems. I may be back to work or back to the regular routine I had with the kids before cancer hit.

You say, “I’m so glad you got through it!” “I’m so glad that’s over!” “I’m so glad you’re DONE with that!”

But guess what? I have a secret to share with you.

It’s not over. It will never be over. EVER. Because I now had a new label. I am a cancer patient. Forevermore.

If I just ended active treatment and look “great,” my reality is that I do NOT have the energy I did before The Beast was diagnosed. So please be gentle with me. Even if I look the way I used to, know that I have just been through a terrible, costly war that had many, many horrible battles. I probably am suffering from some form of PTSD. Really. I may need counseling or anti-depressants to get me through re-entry into “normal” life and to deal with the expectations that others have of me. Because I’m changed.

Maybe a few months have passed since my active treatment ended. I don’t look like I had cancer now. And I sure don’t act like it. I’m doing my best to resume life as I used to know it. But the reality is life will never be the same again.

Some of us are lucky enough to be able to take a pill that will help keep The Beast away. So every day, as we swallow that pill, we say a silent prayer to ask God to use it to kill whatever rogue cells might be floating around our bodies.

And some of us have a different type of The Beast. It’s aggressive. And we hope that one day the medical community will come up with other ways to fight it. We’ve done all the treatment we possibly can. So now we wait. We wait because there’s a higher probability that this type of cancer will return. And there’s nothing we can do about it now. Except wait.

Now that we have been diagnosed with cancer, all of us have different odds of The Beast returning. Some odds are in our favor, some not. I am a cancer patient. Forevermore.

My oncologist will order tests every three months for a while, then every six months, then every year, then maybe even every few years. But if I want to continue to fight The Beast, I will ALWAYS have to go back for more tests. More doctors’ visits. More scans. More needles. More paper gowns. More pokes. More prodding. More questions.

When I fill out forms in the doctor’s office, I no longer have the ability to check “NO” to all the pre-existing conditions. I now have to check the boxes that say I have had cancer. That I have had surgery. That I have had radiation. That I have had chemo. That I have implants.

My children will now have to check the boxes that say that their mother had cancer. Their odds of getting cancer have now increased, and I would do anything to get cancer again if my children didn’t have to.

I will always have that little thing in the back of my mind that whispers, “What if it comes back?” I will always have a certain level of anxiety with every blood draw, x-ray, MRI, CT scan, mammo, PET scan and other test that my oncologist orders. FOREVERMORE.

Unless you have had cancer, you can’t possibly know this. And you certainly can’t understand it.

But it’s real to your loved one. Even if she doesn’t say it out loud, the fear is there on some level. No, it’s not usually all-consuming. It’s just there. In the background of my mind. Cancer.

For those of us who have a relationship with God, we work hard to give that fear back to Him, asking Him to transform it into increased faith. But we’re human. It’s almost impossible to escape the fear in the still of the night, when no one else is awake, when the only sounds around us are the soft breathing of our loved ones.

So we will continue to fight. Usually without words being said. We will do our very best to live life to the fullest, because one of the things we’ve learned the hard way is that life is fleeting. Precious. Never guaranteed. We have lost friends to The Beast. We have come to understand how thin the veil is between life and death. We have known at least one friend who was here one moment and gone the next. We’re not taking life for granted anymore. And we are grabbing onto it with both hands.

And we will continue to fight to be sure The Beast is kept away.

But please don’t forget our secret. And please help us through it.

I am a cancer patient. Forevermore.

💜 Jan Owen James 💜

I feel my rocky road has now become a roller coaster and I would now like to get off, enough is enough.

Yes I chose to have my latest operation but I have struggled with this decision as it was another general anaesthetic and time off work, not to mention the pain and knocking me back physically again. Why do it, it’s only a boob – cosmetic am I that vain ? But it goes deeper than that it’s about confidence and feeling womanly. I am aware my family have struggled to understand my need to have a go at making my pretend boob fuller and a better shape, and I am sorry to have put them through it, but so far the results have been worth it. I had liposuction from my lower tummy (unfortunately not enough to make me a size smaller 😕) they then do something with the fat which makes it softer the put it into the boob, I have bruises on bruises, the pain wasn’t as bad as I had expected but still very uncomfortable. They still had issues trying to get a cannula in – the thumb was used, after suggesting the foot!! Chemo still giving…….

Today I have attended the colposcopy clinic as my smear results were abnormal, I waited 14 weeks for these results. So today I went and yep he was surprised at what he found, his words “Well I wasn’t expecting that” . My cervix doesn’t look how it should, it’s covered in a white fluff, he said polyp like, oh great this is me – doesn’t surprise me! He says he would like to perform a loop excision biopsy, this is where they use an electric current to remove abnormal tissue, a local anaesthetic was used to numb my cervix, he then removed the tissue using a wire loop. The smell was awful, burning tissue but apart from that and it being uncomfortable I was ok. The nursing staff were amazing very calming. The consultant explained that he thinks its my bodies reaction to tamoxifen, he doesn’t think it’s cancer, but could have become if left or just spread, he is sending a biopsy off – so now the wait begins, possibly 4 weeks. “Cancer the gift that keeps on giving”, as someone said, yep please stop giving I’ve had enough. My family need me now so just do one …… stop this roller coaster I want to get off! I feel quite low and tearful it sometimes just gets too much and my positivity takes a knock.

Tomorrow is another day

It’s been a while since I’ve blogged, life has moved along, as it does. Good and not so good days, more good ones though which is great.

I don’t think anyone would disagree that we have had a rough 18 months, and that myself and family have struggled, however we have turned a corner over the last few weeks, I have been feeling a lot better, a lovely week away with my kids helped, and yesterday was a particularly good day. My daughter got her A level results, not only did she sit them she passed them with some fantastic grades – admittedly not what she wanted but with what she has been through they are amazing- she inspires me every day, she would hate that I am say this, but she does, with all her struggles she has not once given up, she has ploughed on and achieved some great results. I hope one day she will look back and be as proud of herself as I am. She has lots of options now, and time to make the right decisions.

Then today, I went to work with my hair curly, it seems it’s got suddenly longer and I like it. My lovely work friends were surprised to see it and said Adrienne is back!! Which is how I felt, for the first time I looked in the mirror and thought I am back 😊 oh happy happy days. Also this week the hospital rang and gave me a date for my tweeking so I will soon have even boobs again.

I had an afternoon tea in aid of breast cancer care, we raised £500 with gift aid, which is amazing and I am so pleased to be able to donate it to breast cancer care and support other people effected by breast cancer – I can’t thank all who donated enough xx ❤❤

Saw this quote, just at the right time as I was feeling low about things. Fed up of taking 2 steps forward and 1 back but actually I am just dancing 💃

Dancing is good, it’s normal and normality is underrated…..kids falling out and shouting is normal yay to normal, it’s been a tough week, so when things are normal I appreciate it. I am suffering with some side effects from the tamoxifen- I must be fed up as I rang my breast care nurse (BCN) to discuss and then I’ve been to the Dr this morning – reoccurring thrush!! And nasty thrush at that, it got me very low last week, just seems to be one thing after another, I think I’ve turned a corner as my fatigue is more manageable- I have more normality in my life and then bang side effects hit me. Most of them I can deal with/able to tell myself its worth it for the benefits of tamoxifen (The hormone oestrogen can stimulate some breast cancers to grow. Tamoxifen will be prescribed if your breast cancer has receptors within the cell that bind to the hormone oestrogen. Invasive breast cancers are tested for oestrogen receptors using tissue from a biopsy or after surgery. When oestrogen binds to these receptors, it can stimulate the cancer to grow. Tamoxifen works on the whole body and blocks the effects of oestrogen on these receptors. This helps to stop oestrogen from encouraging any breast cancer cells to grow) but nasty thrush wasn’t manageable. Unfortunately there really isn’t an alternative to tamoxifen for pre menopausal ladies (I understand there are other drugs on trial but not tried and tested as much as tamoxifen) – so we can try to stop the symptoms, I was hoping the Dr would give me tablets that you can take once a week for 6 months (someone advised me to look at the NICE guidelines for thrush, so I was in the know when I went 😀 thank you to my lovely breast buddie xx). But nope she wants to air on the side of caution and do a swap, so need to wait for next bout 🤨. Because of all that is going on hormone wise, I am dry down there too, my BCN said it’s part and parcel of tamoxifen! Yippee ….. she said ask for some cream whilst at the Dr but be aware they may not want to give me any as they have a small amount of oestrogen in them, which I should be avoiding, however it’s so small the benefits out way the risks, so I am prepared and give a good explanation and after discussing tablet verses cream (tablet has slightly more oestrogen) we go for cream, I get home and what do I do? Yes I read the flipping leaflet and it clearly say DO NOT use if you’ve had breast cancer, now I am all of a dither- this is silly I know, my BCN said to ask for it, a menopause specialist on the breast cancer care course said they were ok to use, and I read the leaflet and think should I!! Well I am going to ring my BCN and double check the make is ok 🤔. Bonkers that’s what my brain is bonkers, but I know I’ll not settle if I don’t double check.

Can you see why I feel like my rocky road is 2 steps forward and 1 back – maybe I’ll just be cha cha-ing the rest of the way through life

A simple quote but not easy to do, since cancer and treatment, I have said before you spend so much time analysing every ache and pain “has it returned?” I feel silly, I feel paranoid, and at times I just feel stark raving bonkers – but on a positive day I can cope well and my brain will play ball and tell me everything is just fine.

In some ways it seems harder now that treatment (well treatment that we talk about) is over – chemo done, hair lost and re-growing, not to mention the surgery to cut the cancer out and re-build my body, its the hidden disease again. I am trying to get a “new” normal life – all the leaflets/books talk about a “new” normal, but do I want a “new” normal, how am I meant to actually like my “new” normal? Yes my hair is growing back, but I still struggle with it, actually let’s be honest I hate it, I want my long hair back! I have gained weight from the hormone tablets, I ache because of these tablets too. Not to mention the IBS 😔. Fatigue I will say no more than wow it still hits me, my immune system is still low – I know it is as I have things to deal with due to this. I have dry skin/itchy legs, hands and feet/veins are still sore, my operation site goes from numb to painful regularly. Armpit where lymph nodes removed, can still have sharp pains. Is this my “new” normal?

Its certainly not all bad, in fact its really okay on the whole, I have more good days than bad. The other Sunday was an excellent day – armed with new comfy bras that make my boobs look normal/back to being my boobs. A hair band which I actually liked, wow how good did I feel 😊

I have just had a week away – it was just the job, we hired a house and I relaxed, I also did more excerise- I got back on a bike, which I haven’t done since my operation, and we walked. It was/is hard going away, leaving my comfort zone of home, its strange how I now view things differently and how my confidence has been knocked. But home is safe and looked after me whilst I was ill.

I have also had a huge change at work – I call it huge, 18 months ago I would have taken it in my stride, but now its huge. I have moved office and area, not new colleagues, ones I have been working with. New clinics and cafes though, its seems that since cancer things that I could cope with well before, are now a huge issue, is this just me or is it just a coping mechanism? I hear people say they are more relaxed after a cancer diagnosis but i feel more tightly sprung, maybe with time I’ll relax?? I also had my first week of 5 mornings of getting up for work for 16 months, oh dear it was hard, by friday night i was ill – sick and had to go to bed, Saturday I did nothing. Hopefully this will ease with time, I have been back at work 5 months and it’s got easier with each month, but I have had to be careful not to over do it at home too.

True – however its hard as feels at times it takes over your life, thoughts and dreams, it can be all consuming. Even once you are in remission it’s hard to move on, as the side effects of treatment can last a longtime, as well as treatment lasting years….

At city hospital second days in a row 😀 yesterday was for a tattoo, I say tattoo it’s what they call it, they use the same technique as a tattoo but they don’t use permanent ink. It’s to give the new nipple and areola colour, best match as possible to the old/original nipple. The nurse was great she explained everything well, went through risks etc. Unfortunately they only last around 3 years, but to help avoid too much fading, I was told to not sunbathe topless 😂 and if swimming to cover with a waterproof plaster. I need to keep it covered for 24hrs then to put nappy rash cream on it twice a day…….avoid soaking in the bath or direct water from the shower for 2 weeks. Also not to use soap or perfumes etc for 2 weeks. Then once healed in 8 weeks I can have the colour filled/topped up. Due to the reconstruction having been made using back tissue the nurse needed to set the needle longer to get through the skin, it’s tougher than breast tissue or tummy tissue. Some areas I couldn’t feel anything, some areas I felt in my back and another area hurt !! I haven’t seen the results yet so watch this space 🤔 I am nervous about taking the dressing off, may take a while before I actually look think I am a little scared ….. I will admit I nearly didn’t go ahead with it, I was so nervous, which seems strange after all I been through this should be child’s play. Didn’t help that appointment was next to chemo suite not great memories there, I wobbled but stayed strong.

I was at the breast institute today seeing a practice nurse for my first year check up. I am pleased to report she checked my glands and both breasts and all is good 😀 and all my aches and pains are due to chemo and nerves slowly growing back, could take a couple of years for my back to calm down. The sharp pains in fingers and toes is due to chemo, my sore veins in left arm is chemo again. Fatigue could be tamoxifen but more likely it’s chemo – chemo the gift that keeps on giving 🤔 even 7 months after finishing. Still it is good to hear it’s normal and to be expected, even the leg cramps!

It’s very hard going back to the breast institute and chemo suite, but I am hoping the more I go the easier it’ll get, especially if it’s good news each time I go 😀 I am back in March to see my surgeon about filling the new breast as it needs plumping up, although the nurses yesterday were very impressed with Mr Kristjen’s handy work – it’s reassuring to know that they are looking after me, I couldn’t ask for better care than I’ve received from Nottingham Breast Institute……