Hello 
I thought a space to reflect on & discuss the last month and how it’s been for you and your family may be a nice space to share? It doesn’t have to be anything big, but we’d love to hear how this month has been for you, and what you are looking for from the next month!
Big, small, challenging, fun, blood cancer related (or not) - we’d love to hear!
The month of October has been a bit up and down really. It’s been the first anniversary of losing my dear mum. I was her carer for the last 3 years and I took early retirement from my job at a GPs surgery to look after her. It was difficult and very stressful at times but I would do it all again. I miss her so much. I have had some good news though and that is my son and his wife have told my husband & I that we are going to be grandparents. We went to a scan last week and they are having a little boy due next March. We are so excited. We had resigned ourselves to not having grandchildren but we are so looking forward to it. I just need my Myeloma to stay at the Smouldering stage please. I want to be well to enjoy my grandson.
Hi Dawn, on the 1st Oct I got a very nasty pain in my back and my back muscles started spasming. I have previously fractured and compressed 7 lower back vertebrae, so the memories flooded back. A week later I had acid reflux which got into my lungs, so I had a cough for the next week, which was not good with my spasming back. My long running shingles then flared up in my back, hands and face. This did not improve my CLL blood test results. Anyway, now my back is still painful, but getting better and not spasming and the shingles is calming down. So I think it will just take time and patience (not one of my qualities). Through the pain I have continued my Pilates classes all month on my chiropractor’s advice, although my body was saying to duvet dive. We had a brilliant time for my husband’s birthday and went to see ‘The Mousetrap’ in London. Our son came round before he went to work so we had birthday cake, shortbread and hot chocolate at 7.00 am. My husband’s family came over on the Saturday, bringing another birthday cake, and we went out for lunch at a pub over looking The Thames. Yesterday my sister came up from Falmouth, in Cornwall, for the morning, I am in Surrey, yes, I know, not very logical, but that is just her. She came up to meet, for an hour in the early afternoon, the daughter of someone who had known my mother in WW2. My sister brought me a copy of my parents marriage certificate as I had never know if or when they had got married. I find entertaining and also going out, very fatiguing so I have really had to organise myself and plan ahead and then rest afterwards when the fatigue really hits me for six.
Erica, Sorry to hear about your pain. I hope it eases soon. I have a pretty good month. The only downside is that because I developed osteoporosis as a result of Myeloma they have put me on Denusomab, an injection every six months. This, as is common, has led to low calcium so they have increased my dose of Alfacalcidol and put me on calcichew, which I hate. However if it stops me having any more back fractures it will be worth it. On the plus side I went to a brilliant play Beryl about the cyclist Beryl Burton. If you’ve never heard of her don’t worry you are in good company. However she was the National Road Race Cycling Champion for 25 years. Quite a feat. The play was written by Maxine Peake. Then later in the month we met my daughter for lunch at a Michelin starred restaurant that was recently voted No 1 in the UK on Trip Adviser. This was to celebrate her 40th birthday. The meal was superb and they made a fuss of her and gave her a card and at the end of the meal a little macaroon with a lit candle beside it. In case you want to know the restaurant Adam’s in Birmingham.
Hi Joan, I am on Zolendronic Acid annual infusion for the osteoporosis and calcium tablets. Weirdly, I have the infusion drip in the Haematology Day Unit and I get confused which hat I have on. The Beryl Burton play sounds good and I have read about it. Your daughter’s birthday celebrations sound great. Take care.
Erica, I used to take Pamidronate which they often used before zometa. Unfortunately I went into Renal failure so could not have either of these because I am on Peritoneal Dialysis. I assume the Denosumab is relatively new and can only be prescribed by a consultant.
Sounds like you had a mixed month @Yvonne - anniversaries can be tough, and I hope you were able to take some time for yourself? Huge congratulations to you and your family on the news of the arrival of your grandson next year! What wonderful news! I hope you’re well, and remain so! Thank you for sharing how your month has been
Oh goodness @Erica you have had quite the month! I am pleased to hear you are feeling better, please take lots of time to be gentle on yourself as you recover! Happy belated birthday to your husband, I hope you all enjoyed his multiple birthday cakes! I hope November is slightly more restful for you!
So, In February next year it will be three years since diagnosis and treatment. Today I went shopping, did a bit of work from home and waited for the children to come in from school. This is such a little thing, but for me it’s huge - I found myself humming whilst pottering around the house and then smiled because I’d had a lovely day. I can’t remember the last time I hummed in my own company and had a day where I didn’t shed a tear. This has really made my day! Just wanted to share. Happy Tuesday all X
Happy Tuesday and cheers to humming. I have succumbed and brought Christmas puds today. Please keep sharing.
Unfortunately I am having a it of a rubbish month. I had a double biopsy yesterday in my sinuses and my eye so feeling a bit rough today. I have my lumpectomy for my DCIS next Friday. However I am very lucky that I have an amazing family who are a massive support. X
Oh, you certainly are having a rubbish month and I bet you are feeling rough today. I have found out who my amazing family and friends are and they are priceless. Now you have also got this community forum to support you as well. Please let us know the results of your double biopsy and lumpectomy and spoil yourself you deserve it.
This is really wonderful to hear Nichola, long may it continue!
Hi Yvonne. Those first anniversaries are so difficult. I hope your myeloma behaves so that you can enjoy your grandson. I never thought I would be a granny, but post treatment when I was really struggling with my mental health my daughter told me that she was pregnant just before we set out to do a Race for Life. Oh my word, I felt useful again. In the last 8 years I have been blessed with a grandson and 3 beautiful granddaughters. It certainly gave me a new lust for life. Congratulations!!!
Hi buddy. You have had an awful month. Cough and spasming back is a dreadful combination. Mr Shingles was telling you that your immune system was overloaded. So pleased that your husband’s birthday was celebrated in a huge way and with lots of cake, but now I hope you are resting and letting your body repair as much as possible. Take care of yourself xx
Wow Joan, I have heard of Beryl Burton. I’m glad you enjoyed the play. I am envious of your trip to Adam’s as I have to be careful of what I eat now, and a Michelin starred meal would be wasted on me. Birmingham has so many excellent restaurants, and I had my photo taken with one of my favourite Brummies, Glyn Purnell, at a Good Food Show. On my 50th my husband took me to La Maison and I went round the kitchens and gardens and had a tasting menu made just for us. It was a once in a lifetime event, but a year later the memories helped me through my treatments for HL. I hope the medication is a help to you.
I just wanted to wish you well for your lumpectomy. Take care of yourself and I hope there are improvements soon x
Thank you. We are so looking forward to being grandparents. We went to baby’s scan and we know we are having a grandson. We saw him moving around and it was lovely. It’s given us something positive to think about. Like you say I just need the Myeloma to behave and not cause problems. Thank you for your kind words…XX
I would love to go to La Maison. I have restrictions on my diet too and Adam’s are great at accommodating that. I have to have low salt and low phosphate - the latter means no veal, game, offal, shellfish, sea bass family, no chocolate or nuts but they still do a delicious meal. So just saying should you have a special occasion to celebrate.