28. February 2022 and Beyond

Well, it’s been a little while - my plan was to update monthly but somehow we are almost at the end of April and I have written nothing. I’m not even sure why, I keep meaning to and then another week passes and I realise that once again I have failed as a Blogger!

So, let me try to bring you all up to date with everything - and hope it was worth the wait!

Healthwise I’m doing ok - I’m much better than I was, obviously, but fatigue is my constant companion - I am so tired of being tired! Exhaustion is exhausting and so incredibly boring! I am assuming it is because I am still having my 3 weekly Herceptin injections and I hope that once they finish in June everything will improve. I can’t quite believe that my main treatment will soon be finished - 18 courses of Herceptin will be completed and then the only time I will need to visit the MacMillan treatment centre will be every 6 months for my Zoledronic Acid infusions. This is when I will feel like I am really moving forward - it’s hard going in every 3 weeks - it feels like I’m still in my cancer bubble - it’s a bit of a no man’s land, so I am very much looking forward to reaching the end of this stage of my recovery. Roll on June when I will be organising my own little celebration as I think this milestone deserves it and, as we all know, my family will very likely not think to mark the occasion, if the damp squib at the end of my chemo is anything to go by!

I am also having serious problems with all my joints - they are so stiff and painful all the time. I have assumed that this is down to my Rheumatoid Arthritis and I have been very worried about the damage it may be doing to my joints whilst it is still untreated due to my white cell counts. I think I had just gone back on my Methotrexate in my last update, but, true to form, my white cells got really low again and I had to stop. This prompted an emergency appointment with my Rheumatologist who thoroughly examined me and confirmed that my RA is confined solely to my hands. I am taking this as a win, as I’m really happy it’s not spreading but he said that all my other joint and bone issues are caused by my cancer treatment, the Letrozole, Herceptin and forced menopause. Basically my body is screaming out for hormones, mainly oestrogen, and I am not allowed to give it any as my breast cancer feeds on it. So, regrettably, I must continue walking like an old lady, being in pain just turning over in bed and generally hurting doing just about anything. Mind you, once I get going I’m fine, like a Duracell bunny, but getting in and out of chairs, cars etc is a slow and painful process. I have been referred to a Pain Clinic but I’m not sure what they will be able to do to help. I’m hoping that once my Herceptin has finished my pain will lessen, as I will only be on the Letrozole - fingers crossed for that!

My hair has continued to grow, it is thick but not particularly long. It is also red and curly - I very much resemble Ronald McDonald, or on a good day when I want to sing out loud I’m a very good Annie! It quite frankly looks ridiculous, like an old lady with a shampoo and set - BUT - it is red and not grey and I think once my follicles recover it will be straight again - although long curls I could live with so who knows? Elsewhere my body hair is a law unto itself - my legs are hairy but it grows slowly, I have no armpit hair, there is less hair on my arms, my eyebrows are almost back to normal and my eyelashes are thin and short but are definitely improving. My nails are very soft and so I need to keep them very short or they bend back and break very low down which is very painful!

Sometimes it’s hard to believe that I found Tilly over a year ago and had my surgery a year ago yesterday. It has been quite a year and I still feel like it’s happening to someone else - it’s such a weird feeling to suddenly catch sight of myself in a reflection and realising once again what has been happening. I had my first follow up mammogram in March - a monumental moment for me. I was so worried about it, which is silly really because this first one should probably be the easiest. How could the cancer not be gone when I’m still having so much treatment? The mammogram was painful, I’m still very tender on my left breast and ribs - I don’t know whether this is normal but I do know that the radiotherapy can cause this pain so I’m going with it. I had my follow up clinic appointment, sadly not with Miss Deol who was stuck in traffic, but with a Locum Consultant who was very nice. He confirmed that the mammogram was clear and he also did a physical examination that was also clear. I asked him about the chance of recurrence, bearing in mind what the Locum SpR said at my last appointment. If you recall, she said, completely out of the blue, that it was very possible that I would get cancer in my right breast but not to worry too much about it. He was shocked by this and absolutely reassured me that this is not the case, and I have a probable 99% chance of it never coming back, which is why I am on the treatment prescribed. I left the clinic feeling so much better, I will have annual mammograms for the next 4 years, and if they are all clear I will revert to the normal 3 yearly pathway that all women over 50 are on. It’s amazing to imagine that will be my future - it’s been so tough and I have stared death in the face twice but if I get through the next 4 years it will all go back to normal - crazy!

My family were overjoyed with the news of my clear mammogram and I think they see this as a huge milestone and we are reaching the end. I don’t feel this way, probably because of my continuing treatment in the MacMillan Centre, as I explained before but it was so lovely to see their relief and joy. Sometimes I forget that this is a journey we have all been on together and they have struggled to see me suffer. The result meant as much to them as it did to me.

I mentioned last time that my wonderful Personal Trainer Charlie was happy to start some light training with me. My first visit to her was very emotional, I cried when I walked through the door as there was a point when I didn’t think I would ever train again. It was so wonderful to be back, to get those endorphins pumping and I loved every minute of it. I struggle with some exercises, my joints do object, but I persevere because the joy it brings me is immeasurable. I go twice a week and probably push myself more than I should - but it is wonderful and I love it.

I suppose the biggest change is that I have returned to work. It is a phased return and my manager suggested a timetable that terrified me. I explained that although I was mentally ready to return, my body is less so, especially as I am still having treatment. She has been wonderfully supportive and has allowed me to take each day as it comes. I am trying to do 3 mornings a week and will gradually build up to my normal hours, although I think this will not be until at least July. This may seem an excessively long time but I need to take it slowly, I do not want to go off sick again so I will do as much as I feel able in a time frame that works for me.

One of my main concerns for returning to work was the parking situation. I start at 7.30am because I park on the street, and if you are not there by 7am there are no spaces available. My body does not currently allow me to be up and about that early so I was very worried about where I could park and the added stress it will cause. Luckily I spoke to Health at Work who agreed to issue a parking permit in the multi storey so now I can arrive stress free and ready to face the world.

I was terrified the night before my first day back not because I thought it would be horrible but just because I had been away so long and so much had changed. I look different with my crazy, curly hair, I have to wear scrubs as I can’t fit in my uniform and with a face mask I am almost unrecognisable! I needn’t have worried, my welcome was so warm and loving. So many hugs, a few tears, people coming from other areas to see me - it was all very overwhelming but very wonderful. Everyone gives me a double take as they realise who I am - it is quite funny. Typically, I had only been back 10 minutes before I realised that absolutely nothing has really changed - the same old problems are still there, still plenty for me to get annoyed about and, much to the delight and laughter of my friends and colleagues, it’s not long before I’m taking charge and making my mark. It really is good to be back!

And life carries on.

P.S. Just received my Pain Clinic appointment - the 25th November.........