I have been having a rough time of it lately. After six years of Chronic myeloid leukaemia treatment and fabulous progress a couple of set backs have made 2023 a struggle.
I started feeling unwell in January and soon could not do my normal activities. I went to the GP with such varied issues that blood tests were repeated and repeated. My bloods were decidedly poor showing inflammation, low potassium, high sodium and low neutrophils. My blood pressure was 20 higher whilst my body temperature was very low. I looked like a ghost but was not anaemic. I had tummy issues, muscle aches, mild chest pain and one day my leg muscles froze and I could not walk for ten minutes and then they freed up and I hobbled home. The GP eventually decided it was time for a call for blood and cardiology support. That was in March. Urgent referrals and nothing happened. Luckily in June my normal Haematology appointment came around and I saw my leukaemia consultant. She looked at me and said “What on earth is wrong? Are you ill?” She was great and questioned me thoroughly and arranged an echocardiogram in a couple of weeks and a host of very particular blood tests. The upshot of this is that a heart medication I was on following Covid, (and getting atrial fibrillation after,) was upsetting my chemo and the symptoms were all chemo reactions. The heart tests showed I could come off the heart meds and within a week I felt like a new woman. I then realised quite how muddled my thinking had been it had given me brain fog too.
(I have since seen that people who developed AF after Covid often recovered from it 18 months later and it was felt to be inflammation which very slowly clears. USA research.)
I noticed a small mark on my cheek around Christmas and by March was a bit concerned because it was larger and had developed some darker areas. I requested a GP consultation in late March and mentioned anxiety that it might be a skin cancer. I was given a mid June appointment which was then cancelled and moved to mid/late July. It was marked as a ‘minor ‘ category ie not urgent. When I saw the fabulous GP she was totally concerned and put me on the ‘two week urgent skin cancer protocol’. I was to go on holiday a week later and that was postponed. After scans, dermatology appointment and then a punch biopsy, I am booked in for an operation to remove the lesion and an area around it and have reconstructive plastic surgery in mid September. I was told this whilst on my postponed holiday having been told I would not get any information for 5-7 weeks! It came back in 2 1/2 weeks. I had visions of having to get flights back and abandon the husband and car to come back without me. Luckily the operation date will be two days after I get back so no panic for me.
I have had super support from friends and family. A fellow golfer, who I had not realised was a newly retired GP, has been especially encouraging and offered a lot of understanding of what was happening to me.
The adorable husband is a rock!!
What I have learnt from this whole episode is that we are a bit special!
The dermatologist tells me that my history with leukaemia and chemo taking means that my body was not effective in halting the skin effects. She does not think the skin cancer is down to too much sun and multiple sunburns because I have only had one bad sunburn and do wear good sun creams and a visor for golf. That one naughty skin cell which started this was not stopped by my immunity because my neutrophils have always been way below normal levels. This would happen for most folk with strong immunity.
The problem with the heart medication was because it would not happily work alongside my chemo. The effect was slow to show and therefore I did not recognise it. I would be quicker to question medicine interaction in the future.
I do remember that lovely chemo pharmacist telling me to be more vigilant about my health and seek medical opinions if I had concerns. That chemo is a powerful thing and I should always be aware.
I do admit to a deep feeling of hurt that even though I flagged up a skin cancer concern that I was not seen for nearly two months. Please, please, if you have a similar issue do be more proactive than I was. I am in a GP practice with excellent doctors but the assessment of need following my electronic form filling and skin photo let me down.
I am in a good place now and even looking forward to the operation although there will be more investigation of the lesion once removed. If it brings it to an end I will be happy, if body scans are needed to check for spread I will deal with that later.
Be aware and take care is my new motto!
Oh @GrandmaJo I just do not know what to say, what very special, complex beings we are, let alone the medications we are on and how they interact.
It is also easy for us and actually the medical people to look linearly, and not holistically.
I am a great one for putting 2 + 2 and making 5.
I have had skin cancer twice on my head, blond, blue eyed, pale skinned and too much sun in my mis-spent youth, although perhaps more susceptible because of blood cancer??
So I have had an op and (plastic surgeon) skin graft from my leg.
I cannot even see where the skin graft was from on my leg was (2016) but I trust nobody will see the area now.
I did have to have lots of dressing changes and the stitches/staples removed.
I remember going back to see the plastic surgeon 12 weeks later and he said you can now have a shower and wash your hair and I kept very quiet as I had been for some time taping cling film round my leg and wearing a fetching shower cap.
I think you are fully entitled to feel hurt and a lot of other emotions too, what a year 2023 has been for you.
My dermatology appointment has been cancelled so many times it is now Jan 24, my GP is livid.
The last time I had a dermatology appointment at my medium sized hospital it had 5 dermatology clinics running on a Saturday.
I shall adopt your ‘Be aware and take care’ motto.
Please keep us posted and really look after yourself xx
Hello @GrandmaJo,
Thank you so much for taking the time to share this all with us. My goodness it sounds like you have been through so much of late. How are you feeling?
Your advice of being proactive is so very welcome. We appreciate how difficult it can be for people to not only be heard but also to raise a concern that may have been perhaps self dismissed, over looked or simply just accepted as a side effect of treatment/condition.
Being looked at and reviewed holistically is something we try very hard to empower our community on, as it really is so important and your recent experience emphasises this really well.
I am so pleased you have finally gotten to the bottom of everything now and i hope the next few steps go smoothly for you.
Always know that we are very much here for you should you need support or to talk anything through- 0808 2080 888.
Take Care, Lauran
I had an operation this week and a melanoma confirmed. I have a deep 9 cm scar down my cheek and will await more biopsy results.
The surgeon was wonderful and really explained his actions well. He was thrilled that my skin was firm, smooth and allowed him to do less cuts and use a method which he had anticipated would not be possible. The interesting thing is that he put me on an antibiotic ( a special one usually used for MRSA) because of my low neutrophils. I was reassured that he fully understood my condition. He said he would not risk a wound infection for me. The nurses in recovery were surprised they had never seen this done unless an infection arose later. Fabulous surgeon and staff and all this on a day when the consultant strike was on but my case deemed urgent and so it went ahead. My heart goes out to those who were not so lucky in their treatments.
So sorry @GrandmaJo that you have a confirmed melanoma on your face.
What a brilliant surgeon and experience.
Please keep updating us and be ever so kind to yourself
I have just been given the all clear for my facial melanoma. I had an operation on one of the consultant strike days!for which I am very grateful. It was classified as life saving treatment. Not much else was happening.
I had a 9 cm scar from my nose almost to my jaw line and it is a beautiful curve to match my cheek shape. It is healing so nicely and I have had all stitches out now, it was done in two stages, first the shallow cuts then a wait for the deeper area. It is healing so well that I can see people get really close to me before they see it and remember.
I was put in a strong antibiotic as a nod to my vulnerable status to ensure that my body had extra support in case of any infection risk. There was no infection. I thought it was great to be treated so holistically.
I had the letter a couple of evenings ago to say that pathology were sure that it had not spread and that it was all safely caught. This caused a bottle of bubbles to be opened and lots of happy family sharing our joy.
The surgeon was aware that the cancer had evolved partly due to my low neutrophils etc the two teams, ENT and dermatology worked well together.
Happy Days!
Oh @GrandmaJo that is great news that you have got the all clear for your facial melanoma.
That is some scar and I am glad that it is healing nicely, please keep letting us know how you are getting on.
I have got pre cancerous cells above my top lip, I await what is going to happen.
Look after yourself, healing takes time and keep those bottles of bubbles coming
Such good news that we booked flights and a week away. Celebrated our wedding anniversary this weekend too. It is all fun, fun, fun!
I plucked up the courage to go to the GP and not make a complaint but to make them aware that as a blood cancer patient on chemo and therefore vulnerable that it was unwise for me to have to wait six weeks for an appointment when I thought I might have a skin cancer.
I spoke to the practice manager. The surgery has super doctors and is forward thinking. I hoped they would be responsive. I explained that I did not want a complaint made but just wanted it to be a learning experience.
I am pleased to say that after investigating they have come back with a letter of apology and they are putting new guidelines for triage and skin cancer concerns for those with poor immunity. They will recognise that blood cancers are a risk factor for urgent skin cancers.
They thanked me and kept repeating that I was firm in not wanting to make a formal complaint but they had processed it as such as the systems worked best that way to work for improvement.
Oh @GrandmaJo I am so impressed with the way you approached your surgery and the response you received, wow.
You deserve to really celebrate.
How are you doing medically?
Hi everyone,
I wanted to wish you all a Happy Christmas.
I hope you all have the Christmas you desire, quiet if that is what you need or a fun one with lots of food and celebrations if you are ready for it. I have 14 or 17 coming to me as I am ready to be the hostess with the mostest again!
I am doing really well now. I will see the surgeon for a final scar check between Christmas and the New Year and I am sure he will be thrilled.
I am feeling like myself again. I found it surprising how much the cancer upset my chemo when it was still so small. I am settled back now with no strange symptoms.
My golf game has not yet come back to me and I have said “That is it ! Golf and I are finished!” a few times. The husband has bought me new golf shoes so it looks like that battle is still to be won. Winter with lots of rain is not the ideal comeback month!!!
Golf is not just a gentle walk it is very demanding. I love the friendships and support I have had from everyone though. I feel a bit like ‘All the gear but no idea’. If that is all I have to worry about then life is pretty good.
Thank you Erica for your support. You are a special friend to me and everyone else so Thank You.
Oh Lauren! I meant to say ‘Thank you ‘ to you too. I always seem to press send and then remember. Doh!
Oh @GrandmaJo thank you so much yes, you are a very special friend.
14-17 for Christmas, wow, I take my Santa hat off to you.
It is beyond my comprehension as we both come from small families.
You certainly are the hostess with the mostest. Talking of that I have a hostess trolley that must be nearly 40 yrs old, but can be so useful in so many ways. Currently it has a TV on it and some books for a friend inside !!
I am so glad that you are doing really well and feeling like your special self again.
Golf is there if/when you make the choice to go back to it.
I am getting more of a fair weather person.
Take it steady over Christmas and enjoy and please do keep posting in 2024