I did hand write my journey all the way through and I shall transcribe here, so forgive me if it’s very wordy and rambling, as it’s exactly a month since my final dose of Radiation was given, and at least 4 / 5 months since the last update!
After the blip in hospital and the cessation of chemo , Gino and I both started to feel better, and though I adored riding all my horses (only pottering) for 2 weeks, I felt I was really starting to bond with G. His eyewateringly expensive course of Gastroguard was completed, and he started to pick up helped along with the Succeed so kindly arranged by Lucinda Green. He has a three month course of it and being turned out 24/7 will help . ( it has helped !)
As I have felt stronger with more energy, it has been fascinating how some of the side effects have changed or lessened. I’m pleased to say thanks to Becky’s wonderful nail painting skills, and possibly a large dose of luck, I have managed to keep my nails, though they are tender to touch, however my big toe nails are gradually lifting off!! My wonderful chemo nurse Sylke, told me I’m not the first to report loosing toenails, and there are even reports of them coming off 6 months from the cessation of Chemo?
The next fascination is my hair is starting to grow back very dark with what appear to be silver tips , I’m also told it can be very curly ? Having been a long haired blonde all my life, to become a curly haired brunette might take some getting used to!? However time will tell. I had purchased a wig right at the start of treatment, but having worn it only twice this somewhat expensive purchase looks destined for the dressing up box! It was too cold during the winter to wear it, as I had been told not to squash it by wearing hats, and by the time the good weather came I had grown to love my bamboo skull caps, with scarves or hats over the top.
Since starting blog 4 so so much has happened ,I did wonder, should I just miss out all the bits about the operation and then Radio therapy and talk about where I am now? However I will describe all of the above in the hope it may help someone else?
At the end of May I was booked to have my wide excision (lumpectomy) and senital node biopsy (stripping out of the lymph nodes in my arm pi ) as you can tell I now have full command of most medical terms relating to breast cancer!! Not being the bravest of sorts, the thought of my operation was giving me the jitters as I don’t take anaesthetic well, and with very low blood pressure, take a long time to come round. Also I had been loving pottering about happy hacking in the glorious weather. The day dawned and Pip drove me at sparrows to Basingstoke to have a radioactive isotope injected close to nipple so that an hour later in Winchester (where the op was to take place), a blue contrast dye is put in, I believe to show up exactly where the lymph nodes are . Well being me, things didn’t quite go to plan!? I had an involuntary reaction to the isotope feeling like a bee sting and instinctively went to swipe it away, cue big panic from the radiographers. Luckily the bulk of it went in, and it was fascinating watching on the screen this fluorescent worm tracking across the breast and into the armpit . After endless handwashing, and the Geiger counter not going quite as mad, I was sent on my way with extortions of please keep my error to myself, which I have done till now! What the panic was I’m not sure of, as I must have been just as radioactive internally?? Cue the second blip, the titanium markers in the tumour are generally located via ultra sound and a X drawn on marks the spot, as hard as she tried the increasingly flustered doctor couldn’t find it, so the department head was summoned and though she was convinced she had found it, to be totally sure I was sent for more mammograms (for some reason these were eye wateringly uncomfortable?) and bingo there it was, hiding deep within the tissue whereupon an even more uncomfortable procedure took place, and a wire marker guide was inserted as belt and braces. By now it is an hour after the appointed operation time, and sensing tension within the department and hearing raised voices, my guilt and apologising for being the cause of all this went in to overdrive, but the lovely radiographer just laughed and said these things happen and that her boss would have def won the verbal bout with the surgeon!!! By now thoroughly flustered at delaying the surgeon and patients after me, not to mention possibly making the surgeon very irritable did not fill me with confidence? All was well though and the blue dye must have been injected while I was under as I don’t remember it being done, I woke to my chest and breast doubling for a Jackson Pollock art work!! Half a blue breast and much purple (iodine?) across the chest, and joy of joys the port had been removed. Darling Pip had exhausted herself staying for the day and not leaving until she had reassured herself I was vaguely compos mentis , Olivia came in having been with Terry for the bulk of the day having a cataract done. Poor darling she really is going through the mill trying to do the yard, care for infirm parents and do a little freelance work for herself.
I realise how lucky I am and how lightly I have got off when my surgeon said that the initial findings were all positive, and that the surrounding tissue was clear of cancerous cells. So I came home the next day with two neat scars, unlike the incredibly brave Sue in the bed opposite who had had her second mastectomy, we had a childishly hilarious time relating the colour changes in our pee! The blue dye comes through a splendid royal blue and over 48 hrs goes through every pale blue shade until eventually becoming clear! Home to watch the racing over the next few days, which is always a joy and distraction. My arm and breast were though very sore and bruised, but healed well, though I was very tired, probably doing to much l can’t help myself, the house doesn’t clean itself and one hand is better than none on the yard!
Two weeks later back for check-ups and the result of the tissues removed in the op, I was given the amazing and very emotional news that I had the all clear. The chemotherapy and operation had been successful. However I still had to see Dr Raj for him to decide whether I was to still have radiotherapy, the consensus was for “ belt and braces “ to have the standard 15 days plus an extra boost of 5 over a 4 week period, things moved swiftly on as treatment apparently has to take place within a certain timescale. I opted for treatment in Southampton rather than the considerably closer Basingstoke, as not only is that where Dr Raj is based, it is also a centre of excellence and as a radiographer friend said, ” you have come so far finish off with the best “
By now I was feeling stronger, was being far more irritating to everyone, but the guilt at the huge workload poor Olivia and Pippa were enduring, was rearing it’s ugly head. I tried to ride but even walking was proving uncomfortable (note to self but rarely heeded is patience!). Edward was home from university prior to handing in his final dissertation, so took me along to the first appointment involving a pre assessment and talk about the treatment, what to expect and possible side effects. Southampton hospital is an eye opener , it’s like a small town, so huge? We eventually found the radio therapy department and I spent a fascinating hour being scanned, measured, drawn on including 3 tiny tattoos! The machine is like something out of a science fiction movie?
Two and a half weeks later my dear Husband took me to the start of treatment and we discovered that coming in on the motorway was tiring, time consuming, and likely to cause marital breakdown!!! But it did take ones mind off the sense of trepidation, but I needn’t have worried. The over riding theme throughout this journey is that I have been so very blessed to escape the worst of the side effects and Radiotherapy was the same. So everyday until the last week when I was very tired I drove via the minor roads, to Olivia’s godmother Theresa, who lives ten minutes from the hospital. Dropped my car, then driven to the door, whilst she found parking, it was a great system and wonderful to spend time with a dear friend.
The reoccurring theme again was kind, efficient, professional staff. They take such precise care and reassure one daily. I actually miss their private language they have involving the words, “ post, ant, imp, sup “ along with mathematical fractions! The minute adjustments of the bed, the extortions of lie heavy, the moving of flesh by millimetres, the daily graffiti on my chest, the banter about who had been heavy handed with the marker pen last, the whirr and click of the machine and red and green laser lines, and staring at the ceiling looking at the picture of blossom I swear resembling Fozzy bear!! I have managed to escape being burnt, just a bit red, no broken ribs, just a little tender and bruised feeling, and no apparent heart problems thanks to the deep breath holds.
So finally it’s over. I am officially cancer clear. The squatters have been evicted. I am so very very blessed and lucky as there are so many not so blessed. However in the words of all the nurses and Doctors, with what my body has been through the effects can take many months and usually up to a full year to overcome and return to some semblance of normal. So I must be patient and as every one has said, be kind to myself. I have been warned that I may become depressed as the release of adrenaline and lack of routine will make me feel flat and deflated. I will feel extra tired / exhausted. The blue boob can take up to a year to fade!! Eat your heart out those wishing for breast enlargements (you must be bonkers ?) ops and radiation do the same job 🤣
Patience and rest must be my mantra ( words that do not come easily to our family )
Oh wow what a journey , I am truly the luckiest person on earth and have so so many people to thank .
The NHS is the most wonderful extraordinary service that we are privileged to have, my admiration knows no bounds for the amazing staff within it. We are so lucky to have the standard of care for nothing. Woe betide anyone who tries to knock it or criticise it in my hearing. People take it too much for granted and their sense of entitlement sometimes drives me mad. When I heard moaning that there were queues, delays, I had to suppress the urge to shout get a life and just be thankful.
My amazing family and friends who have borne, and continue to do so the brunt of my ill humour, and who have given up so much to support me through it all.
My horses and dogs for giving me reason and purpose to get up and stick to a routine.
The church in PENTON for being a special place of peace and calm.
What can I take away from this episode in my life ,
Well it’s doable, people are very special, you reaffirm old friendships , make wonderful new friends.
Having been a human pincushion, I’m still scared of needles 🤣
I love having painted nails and will continue with them
My big toe nails having hurt, oozed etc for months still hasn’t fallen off but at least though black don’t hurt!
My batty punk Mohican / ridgeback look has grown out and I am now a proud possessor of lustrous dark curls. I have grown to love it and the fact above all Terry, Olivia and Edward love it, and think Mum looks cool, means it will remain short .
My boob and underarm are still very uncomfortable, but I think I didn’t give it enough time so hope they settle down.
Sadly my appetite along with hair growth, has come back with a vengeance, oops tight clothes again and those rogue hairs on the chin , how could they 🙈😩
So now it’s time to reassess the future
Many of the warnings have come true, I am exhausted, struggled with depression and the enormity of what I have survived but time is a healer.
I wrote a bucket list and have ticked one thing off already !
I must not sit on my hands and have regrets later, I must be bold and embrace the future and act on my plans / dreams for Harroway, and try very very hard not be sucked into my old life ( harder said then done )
The list is endless but the message is always the same. I am very blessed, as are many who have escaped this scary disease, so always be kind, giving and thankful for health. I hope these words over the last few months give people a small insight into my type of cancer and it’s effects.